MAMMOGRAMS IN 2014

In my experience in the hospital system in New Zealand, where I reside, I found some members of the medical profession not completely honest, or even interested in the latest information, especially if it disagrees with what they already have learned by rote.

A recent study shows mammograms are not the be all and end all. That in fact, they cause over diagnosis in 22% of woman. What does this mean? Read on.

The actual Medical Jargon version of the study is here: Twenty Five year Follow Up for Breast Cancer

And the Time article here: do-mammograms-save-lives-hardly-a-new-study-finds

My sister recently went for a mammogram at Mercy Hospital in Auckland and ask the radiologist attending her their opinion on this latest information. It was "it has been totally discredited".  How is this possible? has another rigorous, large, thorough 25 year study in 89,000 women also just been completed that disagrees? Probably not. This is just the kind of thing people inside the hospital system say to keep you calm and compliant. They don't wish to deviate from the corporation's current by line.

My opinion is that medical staff are only people and they are just doing their job and trying to make it simple.  They are not paid to say "actually, manual checks by a doctor are just as effective as mammograms".  Or "reducing your alcohol to one drink a week, or better still, none" will massively reduce your chances of recurrence.

Don't believe everything you hear. DO your own research and reading, especially the technical doctor stuff, like actual studies as above. Be armed with knowledge and don't be bull-dozed. They gave it a pretty shot at bull-dozing me.

In New Zealand within the last two weeks it has been announced that discovery of breast cancer is at an all time high. Are we getting sicker? are our bodies being poisoned by insecticides? Is it our drinking culture? Maybe all of the above, but also the use of mammograms is adding that 22% in over diagnosis, as per the above articles.

The actual DISADVANTAGE of mammograms is large. Of the two groups far more women had surgery, tamoxifen, radiotherapy and chemotherapy that were in the mammogram group, for tiny difference in long term outcome in lives lost. But yes, that may be your life, or my life.

You see, manual checks may find a cancer slightly later than a mammogram, but those are the ones that are "doing something", they have gotten to the stage where they need removal if you can feel them. Mammograms find pre-cancers and cancers that may never threaten the life of the woman, and may even disappear by themselves, as well as dangerous cancers.  This is a known fact but not well publicized that many cancers go away by themselves. Look it up. Manual checks also find less dangerous cancers, but its the earlier stage found by mammograms that is increasing the amount of treatment.

An interesting thing about breast cancer is "environment".  You can read about this in the Susan Love books on breast cancer. "Environment" is the surrounding tissue. Its like a bad kid in a good area (I have covered this before). The "bad kid" can be influenced by the "neighbourhood" and may simply improve and become part of the good neighborhood. Cancer is something the surrounding cells can often fix. There has to be many failures in the body's mechanisms before cancer can become serious and take hold. I think ethylaldehyde, the toxic product of alcohol, for example, would contribute to a degraded neighborhood.

Every single case of cancer is different to another though. Just read up, don't believe everything doctors say. Online medical articles are an excellent source of information, so freely available on this wonderful thing called the internet.

So a lot of cancers are being found and treated, so the breast cancer rates look great. Just remember the price is an awful lot of unnecessary surgery, radiotherapy etc., Those that have problems caused by the treatments wind up in other departments, therefore not messing with the breast cancer stats. Many women do feel the additional treatment is worth it though. There is no harm in awareness and being able to look at both sides though.

Please see my previous blogs for more detail on the above. This is just a small update.

Invasive Tubular Breast Cancer: slim benefits from Radiotherapy

I am a 50 year old woman, post lumpectomy, who was about to undergo radiotherapy, but I discovered there were some anomalies in what had been prescribed and I raised a few questions with the Radiation Oncologist.  I really wanted a frank discussion with her - to be spoken to like an adult who can understand some facts and figures - to be provided with statistics relevant to my particular case. This did not happen: I had had some extra time to think, as my radiotherapy was delayed by my slow-to-heal lymph node surgery.

The following is about my situation alone; but I can conclude that every woman with breast cancer should do her own research once she has her histology report. There are many ways to estimate outcomes, benefits of radiotherapy. None of which are guaranteed, of course, they are mere indications, but helpful.

YOU are the person most interested in what happens to you. Your Radiation Oncologist is probably not going to doing the same amount of research as you will. Don't accept a doctor as being some god like figure - they are just humans that can be time-poor, lazy, jaded - or amazing well-informed intellectually gifted humanitarians, if you are lucky. I tend to think mine was the former.

My Radiation Oncologist was always going to prescribe radiotherapy for any invasive breast cancer - this is standard practice. This is because the accepted medical by-line is "there is no sub group of invasive breast cancer that cannot benefit from radiotherapy".  This is a true statement - HOWEVER - some of these subgroups, such as mine, have MUCH less benefit, than the average case of breast cancer. This is the point of contention. I should have been informed of this, but its too much trouble to get into the nitty gritty, for a Radiation Oncologist in the public health system. Yet this is supposed to happen, according to NZ's Management of Breast Cancer Guidelines. Never mind. I did my own research and made my own decision, which I take full responsibility for.

So during this extra healing time, I looked up the particulars of the kind of cancer I had had removed, being Tubular Invasive, plus in situ cribriform, found some great links on how to use doctor's prognostic tools, and after a few very interesting discoveries in medical journals online, I questioned the radiation oncologist about why she has prescribed in particular the following:

Three grays a day for three weeks (15 days) plus boosts to the tumour bed so 45 grays + 11 boost grays = 56. This is (I think) known as a hypo-fractionated (HF) radiotherapy schedule, fast and stronger, with supposedly the same effect and side effects, as the 2 grays a day for 5 or 6 weeks schedule. I wasn't told why I was having the HF radiotherapy. The boosts, she had formerly explained, were to do with my "young" age.

The boosts in particular turned out to be not at all recommended for my situation, according to NZ's own Breast Cancer Guidelines, as it offers just .08% lower recurrence risk, but twice the side effects.

Additionally, boosts should not have been prescribed with the HF radiotherapy. But this was just the start of the chain of events that led eventually to my decision to refuse radiotherapy treatment.

In my second and final meeting with her, she did not really response to hardly any of the questions I had raised. Instead she had (gone to all the trouble) to print out a single study illustrating why she recommended radiotherapy for me. It was half a page with few details, by the Radiation Department of Harvard in 1992 which showed a 23% recurrence rate in the ipsilateral breast (original site) of breast cancer, in women with early stage, no nodal breast cancer, T1. Thus similar to my own case; clear margins, no vascular invasion, for women receiving no radiotherapy.

I didn't have time to read the few details of this study until I got home. At a glance it looked scary with 23% recurrence rates, (still much less than the average recurrence rate of 39%), but upon closer inspection, although this study included women with Tubular Carcinoma (the kind I had), it didn't say how many, and also included the much more common and dangerous Invasive Ductal Carcinoma (IDC). This study was just 87 women, smaller even than actual Tubular Carcinoma studies, which are generally small because of the rareness of this cancer.

My guess is, and its a huge omission in data, is that the Tubular proportion would have been the same as in a general breast cancer population 1-4% (one to three woman in the 87). My guess is none of the TC cases were among the 23% recurrences. Why they didn't give more details I don't know, but I gather this article was "cherry picked" as supporting the RO's case for my treatment, better than anything else she could find.

This was also the first time she had done anything other than offer blanket statistics - yet Tubular Carcinoma is known to be the least aggressive of breast cancers, something she thought not worth  discussing. I never got any answer as to why that particular radiotherapy regime was prescribed. She could have "sweetened the deal" by telling me up front she was dumping the boosts and giving me 2 grays a day instead of 3 - that may have persuaded me, but this wasn't offered.

My comparative study, I had brought with me, was of 102 women with pure Tubular Cancer published in 2010.  The results were that there were no deaths from Tubular Cancer, but two deaths from a recurrence of a different, more dangerous breast cancer, a "phenotype shift". Recurrence rates in women with lumpectomies was 11% for those who didn't receive radiotherapy. Those who DID receive it, had a recurrence of 5.8% (were these the same women with the phenotype shift?)

Note: Radiotherapy can create "breast cancer stem cells", which are 30 times more resistant to radiotherapy and chemotherapy - an alarming thought. Proven so far only in mice, (this is the latest information). Is the body "fighting back" on a cellular level? (what doesn't kill you makes you stronger on a cellular level). There is a link to an article in my previous blog about this.


Largest Tubular Carcinoma Study 2010

So the recurrence rate for those women with Tubular Cancer and lumpectomies and chose not to have radiotherapy was 11%, less those who had lumpectomies and radiotherapy but still got a recurrence (this rate was 5.8%), means the actual benefit of radiotherapy is 5.2%, which gives me once again, a similar figure to those I had arrived at via prognostic tools and other studies (see my previous blog). As concluded previously the risks weighed against this figure leave me in the 1-2% range of benefit - and not worth it.

Should I have a recurrence of any kind I would preserve radiotherapy for such an event.

Below, yet another study - this time recurrences were only among women who had surgery alone. In this study radiotherapy seemed to bring recurrence rates to zero, but the recurrence rate was very low anyway, in those who had surgery alone.

Excision Only for Tubular Carcinoma of the Breast - it seems Tubular alone is discussed in this context

"The low frequency of distant metastasis and cancer-related mortality in primary TC and the development of recurrences only in the group of patients who were treated by wide local excision raise the question of whether TC is at the least aggressive end of the spectrum of a malignant disease or represents a unique and distinct entity of breast cancer with an excellent prognosis". 

CLEAN MARGINS AND THEIR PREDICTIVE VALUE

Surgery can be very curative, the larger the clean margins, the more curative.

Although I had clean margins, most of which were very large, the oncologist brought up I had one which was just 4mm, which some surgeons would consider "close" (but most would not, as most accept 2mm). However, this was for the in situ part of the tumour. The oncologist brought this up as a reason for radiotherapy, but didn't mention its in situ nature. Additionally this measurement was a distance from the surface of my chest skin, thus there was no more flesh beyond the surface of my skin to take or be measured. The in situ was quite close under the surface. The total area of tumour was 60% tubular invasive and 40% cribriform in situ, making up 20mms altogether. There was no vascular invasion or nodal involvement.

Link: Cribriform carcinoma is by definition low grade

When cancer is in situ, radiotherapy is not usually required, so often treated with surgery alone. It is Stage 0, non invasive, at this point.

For the invasive component of my tumour, the smallest margin was 6mm, a very good margin. The rest of my margins were 8, 20, 17 and 27mm (really quite large). The bigger the margins the better, with many surgeons believing it is the major favourable factor in reducing recurrence.

Radiotherapy, Dr Melvin J Silverstein explains: "blunts" the value of good, large clean margins - as in radiotherapy improves recurrence rates, but one can't tell necessarily what is the major positive influence. So it is personal experience that leads surgeons to the belief that surgery involving wide clean margins may be the real reason for low recurrence rates:

The value of large margins, according to Dr Melvin J Silverstein

What my surgeon did was essentially a "reduction mammoplasty", which is of great benefit in recurrence rates (as recommended in the above article). I had told my surgeon just prior to going into surgery that the breast he was operating on was easily the largest, so he said "he would balance them". He did a terrific job, taking plenty of surrounding tissue, something surgeons very much prefer to do for good outcomes in breast cancer surgery, but naturally the visual/cosmetic effect is a big consideration and they can't always do this. In this instance, my desire to reduce that breast size very much worked with his preference.

An extract from the above article, as you can see 83-97% of surgeons accept that 6mm is a very acceptable clean margin :

BOOST RADIOTHERAPY 

During my second appointment with the Radiation Oncologist I mentioned the recommendation of "boost" radiotherapy, and she promptly denied she had done this. But then looked at her computer and said "oh yes, so I did".

I wanted her to know, and I told her, that I had read that other doctors do not recommend combining boosts with hypo-fractionated, higher dose radiotherapy regimes, as she had prescribed me. She was not happy with me. The following excerpt is from an article on the new prone position for radiotherapy.

My RO never openly admitted she should not have been prescribing boosts to me. She made no comment on this being a mistake or not, but it's apparent she had since thought it not right for me after all? Or maybe it was because I pointed out it was not meant to be prescribed to women with clear margins in their 50's, are per NZ's own guidelines?  - never mind being combined with the higher grays per day she had prescribed.

Additionally, it seems that breast cancer surgery techniques generally mean that the bed of the original tumour cannot be identified, so what was she going to point the radiotherapy at? simply the scar? this is not indicative of the 3D orientation of the tumour bed, as per this excerpt from article linked below excerpt:

LINK : Margins, oncoplasty and treatment

I gather the technique used in particular on me by my surgeon was the ellipse segmentectomy, which can also be described (as it was to me), like a slice of pie being removed and the empty segment of the pie where the slice was, is pushed together to complete the circle again.  Thus its extremely likely the bed of my tumour is unidentifiable and should NOT have been getting boost radiotherapy (aimed it its no longer known location).  I had 50 grams of flesh including the tumour removed, which is close to the median weight of tissue removed during a reductive mammoplasty, as per any of the above surgical techniques. Once again, my Radiation Oncologist should have considered this circumstance as yet another lowering of recurrence rate predictive factors, knowing she had no thought towards discussing this at any point, its not surprizing.

My Radiation Oncologist's position was mainly of defending her recommended treatment, rather than trying to convince me to have radiotherapy. She did get really quite angry with me, yet I am well within my rights to question and/or refuse radiotherapy.

My GP warned me I would come up against her ego and how right she was, but I was being completely reasonable. It shouldn't be this way.  We didn't go far into the actual figures of Tubular Cancer, because she didn't want to know. She also conveniently threw out all prognostic tools as any indication of recurrence rates and said "we just don't know". Good to know.

As mentioned in my previous posting, I had discovered my Nottingham Prognostic Score had been added up wrong (1+1 does not =3), which artificially raised my risk of recurrence on paper. The RO claimed this "typo" had no bearing on the treatment she had prescribed (this goes against much of what I have read - that the NPI is indeed quite relevant to treatments prescribed).

Upon realizing her prescribed treatment was looking to be quite flawed, and even ill informed, it was difficult to go ahead and accept radiotherapy at the hands of someone like this. Perhaps even without the trust broken, I would have made a decision not to have radiotherapy. I can no longer tell, but I had never considered not having it until I became more aware.

But either way, I take responsibility for my own decision, and any consequences.

It was my feeling that she was very perfunctory in her job, with little real interest in the individual.

Maybe its just too much to hope someone can bring that every day, when each day, there are another five women in the same needful and vulnerable situation, arriving to be processed?

DO DOCTORS HAVE A "THIRST FOR KNOWLEDGE"?

This is something we would all assume, but maybe like people in jobs all over the world, some are not interested in continuing their education or being the best they can be. One would think in the field of medicine this would be a pre-requisite, but is it? I think its apparent that it is not.

I often research and read articles on the latest breast cancer treatment. Over and over I read sentences about how the medical community is slow to adopt new practices, even if these new practices are proving really beneficial and safer for patients. Its a worry. Surely part of the job is to update one's knowledge, technique or whatever else is involved?

It clear there was some incompetence in regards to my own radiotherapy recommendations, but I didn't want to get into a yelling match with the RO.  I guess I am now considered "a difficult patient", for speaking up, no matter how politely.

Her worst case scenario was 23% recurrence - which equates to 77% no recurrence - I'll take that - with no introduction of other dangerous elements into my body via radiation. If her study had been about Tubular Carcinoma only, it would have given me food for thought, but it wasn't specific to Tubular Carcinoma.

Having read to the end of her tiny, almost completely irrelevant and flawed study, four women had died of distant metastases (how breast cancer eventually kills) but more women (five) had died of other unrelated causes, old age, heart attacks and the like.  Eternity was never an option for any of us.

The more I read, the more I know and the more I am comfortable with my decision. There is little to dissuade me back towards radiotherapy. Yes, I have now apparently a raised lifetime risk, simply because my body has made cancer before and may do so again, as in a "new primary cancer". But this is not something radiotherapy to the previously affected breast, can thwart. This information about "new primary tumours" is also something not mentioned by those prescribing radiotherapy.

The ticking clock of mortality is ironically, less of a worry to me than before, as my appreciation of each day annihilates this. The benefits of looking after myself better are astounding, as my energy level is incalculably larger, with my weight a lot less, more exercise, no alcohol (no hangovers so no more carcinogenic substances resulting from drinking - acetaldehyde) and major positivity, not to mention the added bonus of my partner stopping smoking.

My holistic GP said it could be simply my body giving me a message. If so, I have listened and learned.

OVER DIAGNOSIS

Is openly admitted among Breast Cancer Researchers.  The following screen shot is the current state of statistics for mammograms, breast cancer discoveries, treatments and outcomes:

The full article can be read online here

LINKS

Online pdf: Management and Guidelines for Early Breast Cancer in New Zealand

Over diagnosis - Medical Overkill?

Screening for Cancer Evaluation and Usefulness

http://principleintopractice.com/2013/07/03/mammography-what-we-know-what-we-think-we-know/

Over Diagnosis Dr Lissa Rankin MD - I love what DR Lissa Rankin has to say, about listening to your own instincts and just getting on with life in a joyful way, very much mirroring what my own GP said.

Why I Am Deciding Against Having Post-Op Radiotherapy

Breast Conserving Therapy means two steps: surgery (partial mastectomy, lumpectomy - same thing), then hand in hand with that: radiotherapy.

I was meant to go to the mapping session today for radiotherapy, get positioned and tattooed, but the lymph node removal wound under my arm didn't heal well and they won't irradiate you if you have anything like that going on, as the immunity system gets compromised during radiation. So I cancelled it in the meantime.

I told my breast care nurse that my lymph node surgery, under my arm, was weeping and she said "go to my GP". So I did.  My doctor was booked out, so the on-site nurse at my doctor's office looked at my wound instead - but then my doctor walked into the room, and said she had been following what was going on with me and would like to talk to me - and I felt so glad to see her.  

She has been my doctor for thirty years and is holistic, she also delivered my daughter 20 years ago. I made an appointment and went to see her yesterday.  I really wanted to pick her brains about radiotherapy. I should have spoken to her from the time of my diagnosis, but I have been kind of "toughing it out". 

I asked her what she thought of  radiotherapy and she said "use your intuition".  Oh boy. OK. She also said "you can just say no, you know", and that I don't have to be rushed into a decision about radiotherapy - there was no reason why I can't take a couple of weeks to think it through. I had been feeling pushed along and "processed". 

I always intended to have radiotherapy - but three things happened that pointed out to me that I should look at this more closely:

The first thing was the underarm wound taking time to heal, which gave me a bit of time to think, and caused me to run into my GP.

Secondly, I had seen a Radiation Oncologist last week, my first and only visit with her, and I was quite shocked she was giving me a LOT of grays (radiotherapy units). 56 over 3 weeks, 3 a day, which is well over the usual conservative 2 grays a day, including boosts to the tumour bed. This may be what is called hypo-fractionated radiotherapy, or it may be accelerated. I wasn't told.

She also uttered the alarming phrase: "you are pretty much guaranteed lung scarring". I took this at the time, and signed the consent form.  And then she said I should be on Tamoxifen as well. THAT'S when I realized her hard right point of view, which is quite different to my surgeon, who had said it was fine for me to not take it, as it only lessened my chances of re-occurence by 1.7% and it had some not great side effects. 

If the radiotherapy prescribed is hypo-fractionated or accelerated it is 5 or 6 weeks condensed down into three, BUT the overall gys are supposed to be reduced, and they weren't?

3gys a day means that if they get it wrong and the beam goes even slightly off, the damage is much worse (permanent) than if they give it in the standard 2 grays a day. There are people whose lives are ruined by the field not "hitting the target volume" at 3 gys. This is, of course, rare, (but I have already experienced someone adding 1 + 1 = 3 on my histology report!)

Here is a medical essay advising against use of above 2 gys a day: http://www.ncbi.nlm.nih.gov/pubmed/16644570  and

http://www.ncbi.nlm.nih.gov/pubmed/19504371 - Hypo-fractionation in radiotherapy:  investigation of injured Swedish women treated for cancer of the breast

She was also grimacing as she told me what I was getting, which set off my alarm bells. What was going on?

But before all that, there was a mistake on my histology report.  My Nottingham Prognostic Grade was put down as 3.32, when the real grade was 2.32, which artificially elevates my risk towards moderate, instead of the lowest risk category. I had told my breast care nurse about this error weeks ago, and she did nothing about it.

Yesterday I realized the importance of this mistake, this is the third thing.  I have since found online medical documents that state the NPI score is the basis of radiotherapy treatment.

Between the Radiation Oncologist being quite far right in her idea of treatment AND basing treatment on a mistake I feel I was getting "the heads up" about something. 

FURTHERMORE: I was diagnosed with Tubular Breast Cancer, which is just 2% of all breast cancers, so doesn't get much attention, but is the least aggressive, least likely to travel. I could not have got a better one, word for word "if you are going to get cancer, this is the one to get", they said at the Breast Clinic, on the day of my diagnosis.

Here is some information on Tubular Cancer: http://www.ncbi.nlm.nih.gov/pubmed/19386432 - I had never heard of it before a few weeks ago when I found it on my histology report (the analysis of the removed tumour). It seems Tubular is a "favourable" kind of cancer, the most favourable in fact.

According to online prognostic tools Tubular Cancer is about as third as active as the most common breast cancer women are diagnosed with, being Invasive Ductal Carcinoma (IDC), which mine is a subgroup of, but has these different, favourable characteristics:

Link: Tubular Carcinoma Study - contains the sentence: "Breast conservation treatment results in low rates of local recurrence for tubular carcinoma with or without the use of radiation therapy.

The oncologist used general statistics in the conversation - but my case is very different to the overall average woman with Early Breast Cancer. I walked away feeling a bit bewildered. Later I re-read the NZ Guidelines doc, as below, and realized, she should have already worked out and showed me my INDIVIDUAL statistics, to weigh up pros and cons of radiotherapy. This was not even approached in the slightest.

Here is an excerpt from the guidelines document:

RADIOTHERAPY PROS AND CONS

The use of radiation in the last 15 years has increased rapidly, since lumpectomies instead of mastectomies have become more the norm. 

Lumpectomies nearly always are accompanied by radiotherapy, as the resulting stats reflect the same amount of breast cancer re-occurence as those who have mastectomies (which generally don't require radiation - one of mastectomies's advantages). 

Currently only women over the age of 70 with small, non travelling cancers are not recommended radiation (negatives outweigh benefits).  

Radiotherapy can kill the initial cancer, but can also cause a myriad of other cancers starting from around the three year after mark. They are not huge numbers of cancer, adding up to under the 1%, but add that to the cardiovascular and lung damage problems from grays "scatter" (there is an "acceptable amount of grays" to the heart and lungs apparently) and it is not looking like the benefits outweigh the risks to someone like me, who is, it appears, getting small benefit, as my risk is lower to start with.

The most common radiotherapy induced cancers are lung and leukemia. The fields of grays penetrate lungs, heart and spine. Radiotherapy Induced Lung cancer for example, tends to be further down the years, 3-15 away - just as someone who has radiation to the chest when under the age of 25 has increased risks of cancer, including breast.

Additionally there is an increased risk of heart disease.

Below is recent information about the range of increase being from 2.4-3.4%. The average of the two scores added to the inherent/natural risk of 1.9%, would bring my post-radiotherapy average heart disease risk to 4.8% - this is already, without any consideration of radiotherapy induced cancers, not looking very viable compared to the 5.8% improvement in recurrence rates radiotherapy would give me:

I was "pretty much guaranteed scarring of the lungs" by the Radiation Oncologist. Additionally the she mentioned rib necrosis, which means some of my ribs would be "cooked" - they change their composition and become more prone to breakage and pain down the years.

Effects of lung scarring can lead to lifetime problems with lung capacity, dry coughing, further inflammation, becoming more prone to pneumonia and the scar tissue actually predisposing your lungs to developing common lung cancer. So possibly immediate lowering of the quality of life, with serious long term possible developments. Many people notice no side effects however, and the damage is only visible on an X-ray. Being a singer, I think I would notice the difference.

"BOOST" RADIOTHERAPY - ANOTHER DECISION I QUESTION

The Radiation Oncologist was planning to give me boosts to the "bed" where the tumour had been (despite my massive clean margins). For some reason she had me in the 50 and under age group, yet according to NZ's own guidelines I should be in the 50 and OVER age group,(50 IS over 50!), whose statistics show little benefit from boosts (0.8%) AND worsened long term side effects.

OS in the above text means Overall Survival, as you can see, these boosts have no bearing on that. It is not life saving, its about cutting recurrence rates.

The screen shot below is a discussion in the context of the newer shortened radiotherapy regime. It cautions that boosts should NOT be combined with shortened, more intense (3 gys a day) regimes, yet this combination is exactly what I was prescribed :

Boosts are useful for women my age, or any age, that have positive margins (remnants of the tumour found too near the excision edges). My margins were very large, and clean, with absolutely no evidence of vascular invasion or lymph node invasion. You can't get much better than that. And then its Tubular as well.

HOW THE NUMBERS COMPARE:

How I arrived at the level of benefit from radiotherapy is further down the page. The maximum "good" it can do me is to decrease my chances of recurrence by 5.8% (from a maximum estimate of 8.3%* - this is from the IBRT predictive tool)

I feel its only right to follow this with the negatives that reduce this benefit:

Less up to 1% cancers resulting from radiotherapy (including lung and leukemia)
Less 2.9% additional chance of heart disease (see screen shot further up, this is an average, not a maximum)

The lung scarring, fibrosis etc is an unknown, but "common" (guaranteed in my case, it must have been the high grays, so scarring guaranteed, how that would affect me, not known).

There there are possible pain issues, hardening and shrinking of the breast tissue itself, getting worse at 5 and then 10 years.

So now the advantage/reduction in recurrence risk by having radiotherapy, is reduced to a tiny 1.9%*

I can take Tamoxifen to lower my risk by an additional 1.7% - add radiotherapy (1.9%) and tamoxifen together = 3.6% advantage all up - NOTHING like the 19% improvement in overall statistics quoted for Early Breast Cancer patients in NZ to me at the last meeting with the RO.

1.9% is similar to the figure of 1.7% my surgeon discussed with me as "not being worth it" in regards to taking Tamoxifen.

*According to 2010's Comparative Study TC to IDC - http://jco.ascopubs.org/content/28/1/99.long

- the outcome of recurrence in TC cases was 6.9%, Invasive Ductal Carcinoma, (the commonest breast cancer) recurrence was 25%.

In the above study NO women died of TC (there were 102 TC cases in the study, and this is one of the larger studies). There was a tiny mortality from women originally diagnosed with TC, but they had a recurrence of a more aggressive kind - which was the true cause ultimately, of death by breast cancer.

It seems surveillance is my best protection.  And to reserve my one shot at radiotherapy, should a more aggressive cancer emerge, at some time in the future. 

AND FINALLY

Mostly the word "recurrence" is mentioned in favour of the use of radiotherapy. Some of the figures on this page also talk about mortality i.e. deaths and sometimes Disease Free Survival. One has to keep an eye on these different terms.

Radiotherapy is exclusively used to reduce recurrence. So therefore it CAN also have a long term effect on mortality, but not usually.

On most information websites about breast cancer risks, one of the risk factors, along with ageing and being a woman is:

"Having had breast cancer previously"

My chances of getting breast cancer again are heightened, compared to a woman who has never had breast cancer before.  This is not the recurrence rate affected by radiotherapy.

Some studies say there is a 16-26% risk of a "new primary breast cancer" for a Tubular case like mine, which is still less than the average woman with IDC (as high as 30%). But compared to 14% risk for the average woman (i.e. 1 in 7), my new risk, post-diagnosis risk is elevated. 

So this risk is far greater than my risk of recurrence in the ipsilateral breast (original site), which seems to be somewhere between 8-11%.

So radiotherapy has little bearing on this new inherent risk factor: This is something doctors conveniently don't mention. Radiotherapy is ONLY about preventing "recurrence" in the same area. Radiotherapy is to the affected, diagnosed breast only.

A "new primary" breast cancer can happen, for example, and is unrelated to the original cancer and radiotherapy, if treated with radiotherapy, especially highlighted when diagnosed in the opposite breast (contra-lateral), and is by far, the larger risk for me, that radiotherapy can do nothing for - although some studies suggest radiotherapy can CONTRIBUTE to cancer in the opposite breast.

Sometimes "new primaries" will also occur in the same breast as earlier diagnosed, and it can be difficult to know what is related to the former cancer and what is a "new primary". However, recurrences are usually diagnosed within three years of the initial diagnosis and operation, so there are many ways to observe whether a cancer is a recurrence or a "new primary".  The paragraph screenshot below, explains it quite well. The full text can be read via the link.

Tubular Carcinoma Study and Outcomes to Avoid Over Treatment

FUTURE BREAST CANCER TREATMENT?

I came across this new nine year study about women with Early Breast Cancer, Radiotherapy vs No Radiotherapy, from May 2013. This is considered "radical", as my probable decision is:

"Post-op Radiotherapy Not Needed in Select Breast Cancers"

www.medscape.com/viewarticle/8... 

The overall result is only a 1% difference in recurrence between radiated and non radiated women - but this is in particular for small, early, low grade cancers (such as mine). The recurrence rate without radiotherapy was 4.4% compared to with radiotherapy at 3.4%. 

If they do a few more studies that agree with this, in a few years, women like me won't be pressured to have radiotherapy at all. Its considered very controversial to not have radiotherapy in currently. But I am very much in the grey area as to whether it is worth it for me. I wasn't aware of this, until fate and instinct intervened.

The only difference between myself and the women in the study, and I completely meet all that criteria, and at the lowest end of risk, is that I don't live in Italy and am five years younger than the youngest woman.

Tamoxifen (endocrine or hormone therapy, a pill a day for 5 to 10 years) is also involved in these figures, keeping them so low, but this low figure compares similarly to the chart further down, which also accounts for use of Tamoxifen.

Early Breast Cancer doesn't kill anybody, late breast cancer does. 

Radiotherapy is only ever one shot, a breast cannot be safely irradiated twice (or even once for some). I think I would prefer to keep this as an option in the future, should there be any recurrence, especially if it is a more aggressive cancer, which seems to be the only reason why women originally diagnosed with TC die, (when they get a different more aggressive kind at a later date).

6th June 2013 Update

And so it begins, my Breast Care Nurse calls me this morning and advises me my chances of recurrence are 20% (she was making it up as usual, she changes her "data" all the time, I have noticed this from the beginning). She also said (ha ha) "Oh yes, I have changed your NPI (Nottingham Prognostic Score) now - yes it was wrong, ha ha". This is AFTER the Radiation Oncologist has prescribed me radiotherapy (thanks for that!)

I said I don't want radiotherapy, and then she said "if I had known you would be like this - we would have given you a mastectomy". I can't believe a nurse, who claims she is supposed to support whatever choice I make, would say something so unprofessional and menacing. I have asked her not to contact me again.

And she actually had no idea what my ACTUAL stats and odds are. But I do. Now.

WHY DO the guidelines say "a woman should be informed of risks" when if a woman decides she thinks they are too much, she will still be pressured to take the treatment?

The fact is, I AM allowed to refuse treatment, but this nurse took it upon herself to pressure me in no subtle way.

I feel like my cancer was some kind of peculiar "gift".  A big wake up call - and the next message is yelling at me not to risk my lungs and other perfectly good bits. If I had something Grade 2 or 3, or anything in my lymph nodes, I wouldn't even be entertaining the thought of not having radiotherapy - but I am at the complete lower end of low risk.

I permanently gave up alcohol the day before my diagnosis, have since lost 7 kgs and doubled my exercise, which apparently can improve your chances by 40% of avoiding recurrences.  I am at my perfect weight.

Have I bored you long enough?  

Below is a screen shot from the Management of Early Breast Cancer NZ Guidelines document. It states that after lumpectomy and radiotherapy (and possibly Tamoxifen too, but its not clear), a women who has had early breast cancer has the recurrence odds of 7.3%. Which is about the same as my own highest odds WITHOUT radiotherapy OR Tamoxifen*.

The next bit is just all the boring figure work, as to how I arrived at my individual statistics.

PROGNOSTIC TOOLS FOR DOCTORS

Below is where I got my "recurrence of breast cancer in the next ten years" figures from, being 8.3% without radiotherapy or Tamoxifen. Without radiotherapy but plus Tamoxifen = 6.3%. The benefit of radiotherapy is 5.8% reduction in recurrence over ten years. It does not take into account the type being Tubular, just breast cancer in general. So this figure is on the high side, as Tubular cuts figures drastically on other prognostic tools. You can see the difference on the interactive prognostic tool link further down.

This calculation was via a doctor's online tool called IBTR. These are my stats entered and each is a screen shot of the different odds of re-occurence over ten years.

And here is another one below - this time it takes into account my particular kind -Tubular Cancer, which has better prognostic features than any other Stage 1 cancer. 

The calculator below considers that radiotherapy has been applied, thus the 2 persons per hundred (2% death rate over 15 years) is similar to the second table above "with radiation" being 2.5% recurrence. This calculator illustrates more the differences between Tubular and other kinds of breast cancer.

You can enter stats into the calculator here and see how Tubular compares to other kinds of cancers: Breast Cancer Outcomes over 15 Years - choose the pie chart or bar graph option, the mortality curves are hard to interpret. Ductal (IDC) is the most common and is, according to these statistics three times more dangerous than Tubular, and ductal is by no means the most aggressive breast cancer there is. The Tubular death rate is rounded up to 2 persons, the actual figure is 1.5%

This table below is from Adjuvant Online! another doctor's prognostic website:

70% of women diagnosed with breast have IDC. Other breast cancers are more aggressive than IDC. In a list of all breast cancers in the order of most aggressive to least, Tubular Carcinoma is be at the very bottom of that list (see table above)


Update 16th June - I have another appointment to see the Radiation Oncologist, as options are limited, (I need an RO/hospital specialist or a GP referral to even see another expert in this field for a second opinion).

The RO this time has agreed to discuss everything with me including the "many interesting points I raised", so I can be sure of my decision "whatever it is". I like the sound of that, and I go into this meeting knowing infinitely more about my situation, than I did at the last meeting. SHE might even be more acquainted with my stats this time.


====================

Links:

A retired microbiologist gave me the heads up on this latest research, something that cemented her decision to not have radiotherapy:

Radiotherapy-creates-cancer-stem-cells-30xtimes-potent

http://breast-cancer-research.com/content/13/2/r38 - this is a study in secondary cancers from radiotherapy

A study of actual risk for second breast cancers and the current trend for prophylactic mastectomies in an un-diseased breast.

http://jco.ascopubs.org/content/29/16/2132.long

Tubular Breast Cancer Links:

Largest Study for Excision only treatment for Tubular Breast Cancer - just 2 out of 44 patients had a recurrence within ten years, both are alive and well after salvage surgery.

In conclusion it states: "This report suggests that breast irradiation could be omitted after conservative surgery in older patients with smaller (< or =3 cm) tubular/well-differentiated breast cancers. However, due to the retrospective nature of our report, we cannot categorically make this 

recommendation".

Tubular Breast Cancer compared to Invasive Ductal Outcomes - again, a conservative approach is recommended in treatment.

===========================

This is just my story, my life. As my doctor said to me, "you are a unique human being, do what is right for you"..

Just the lumpectomy thanks. Nice job, stop there.

Surgery Day At Last

I marked time for the last week constantly, coming up to the surgery date. Along the way, my imagination got the better of me.  Perhaps eight weeks is too long to think about breast cancer surgery? Three or four is about right, as it would have been originally.

I had closed the Dr Susan Love Breast book at last, thoroughly convinced I am having the perfect, most up-to-date treatment for breast cancer, as it is in New Zealand.  After reading the stats on outcomes, I am all for this surgery, sentinel node biopsy and the radiotherapy.  But too much technical reading can make you anxious and I was well on my way to that state with the date so close. I love coffee and although I only ever drink one or two cups a day, I had to quit because anxiety was ratching up higher and higher.


THE SENTINEL NODE MAPPING

The first appointment was the day before, to map my lymph nodes - and the description sounded like some kind of sci-fi/horror scenario in my over-active imagination; five radioactive injections around the nipple and tumour site, which sting as they go in, then lying under a large machine having my unsuspecting lymph nodes mapped for removal. It sounded de-humanizing and clinical.

The reality was this:

Arriving at a beautiful, large old Epsom Villa, the small reception area warmly lit inside and softly decorated, greeted by a receptionist who knew my name even as I walked in the door "ah, you must be Pauline". Already I was more relaxed. Whilst sitting on the sofa, a lovely, quite pregnant Canadian lass came out and said "come on through". She was the Nuclear Medicine Technician it turned out, she was casually dressed, not like a technician, nurse or anything like that.

The room was just a typical consultation room with a place to lie down, and in no time she giving me the rundown of what she was going to do.  The casual calm of her demeanor was right on, just straight up and relaxed, but still very much in charge. I asked her quite a bit about the machine and how it worked, what she did, and wound up thinking she had a brilliant job. There are a lot of women who are doing these technical jobs, especially to do with breast cancer. She deals almost exclusively with mapping for melanoma and breast cancer.  The node mapping, as she explained, makes life easier for breast cancer patients after recovery, so minimal lymph nodes are removed, most are saved, as they have an important filtering job to do in our bodies.  The conversation was technical, casual and comforting, all at once.

Its turned out I only needed two, not five, injections - I thought she said "inductions" in her Canadian accent, but then I was looking at her six month pregnant form as I thought I heard that. She said in Canada they do four, in New Zealand two.

So two injections is now the norm, and they go in the quadrant of the breast where the tumour is, i.e. four segments to the breast, into just the relevant quadant. She asked where my mass was and I indicated. So she told me as she put the injections in what she was doing and said "a bit of pressure now" as the actual liquid went in. It is only shallow too, as that is where lymphatic paths are, just beneath the skin. It wasn't bad at all, kind of like heat that stayed longer than heat would, it was totally fine. Then I put the patient kimono on and sat with my partner in the lounge while the liquid worked its way thru my lymph nodes towards my armpit (axilla).

Fifteen minutes later I was taken to another room, a larger room with floral wallpaper, a hybrid MRI/scanner machine featuring, which is apparently the latest kind. These machines are not half as scary as they used to look. The scanner I lay under was the first part, and although there was the big round circle of an MRI scanner behind it, I was not going anywhere near that.

The scanner looked something like a photocopy bed about 10 cms above me, nearly a metre in length and less in width.  It was explained to me it took a 100 seconds or so with it's lenses open (50 lenses she said), to pick up the gamma ray emissions and create the image. Two were taken, from two different angles, I was positioned a few different ways, then she wrote on me with a semi permanent sharpie and I was all done- all up about 35 minutes I think.

I was given photos of my lymph nodes to take with me and a letter confirming the contents.  I like how patients are couriers for their own medical information in these proceedings. Makes perfect sense. I could have a good quizz too. . . now home and one more sleep before the big day.

Sentinel node notes to the surgeon. 

THE HOOK WIRE INSERTION

Up early for the hook wire procedure, very similar to the biopsy I had eight weeks before, but just a needle put through to the tumour and a fine wire fed through that, piercing the middle of the tumour and pointing out of my skin so the surgeon can easily find, my not easily found lump.

As usual, I was curious about everything. I said I wanted to the see the procedure, so the monitor facing me was put onto the ultrasound channel and I could watch it all.  They said most people do not want to see it. 

The doctor did very well to make sense of the sludgy grey and white matter that makes up a breast. The tumour was hard to see, but he found it. He couldn't measure it and of course, part of the tumour is made up of the scar tissue which surrounds it, I think the body does this to try and halt its progress, but also there is reaction between the surface of the tumour and the surrounding area, putting this barrier around and making it a hard lump. How much is tumour and how much is scarring isn't known until its in the lab.

The area was numbed with one injection and the needle put through.  The only real discomfort was the pressing of the scanner on my breast over the tumour, very mild and short lived. In no time they were pinning the wire across my chest with dressings to hold it in place to travel to the hospital nearby.

But before that I had to have another two mammograms, two views of the breast now with the wire in place.  Since I was so interested in everything the doctor put my mammogram photos up on the lit board so I could see them.  He also outlined the tumour shape with a red pen on a paper printout of the ultrasound, it looked like a nugget, with a very jagged, knobbly outline. 

AT THE SURGERY UNIT

With another batch of transparencies and a letter added to my folder to take to the surgeon, my partner drove me to the Surgery Unit at Waitakere Hospital and I was quickly shown to a place to get into the hospital garb and put my overnight bag away, in a locker with key, which was pinned to my giant dressing gown. Then into the waiting area. It was about 10am.

Two older ladies were next to me either side, both in for hip operations with a different surgeon. We talked a while and wished each other well. Then I was alone in the waiting room. "Ellen" came and went on the TV. 

Hours ticked by and I realized I was really hungry and feeling my rubbish night's sleep. Then a nurse took me into a room to do all the paperwork, and said the anaesthetist would talk with me next. After the paperwork she noticed I was wilting a bit and offered me a temporary bed. I took her up on the offer.  It was now about 1.10pm. I asked around and found out my surgeon had four breast cancer operations to perform that day, and I was number 3. 

Suddenly it was all on, my surgeon appeared at my bedside, but I thought he was the anaesthetist, dressed the same, but then I put my glasses on and said "oh hi, Peter!", a bit of an informal way to greet a surgeon perhaps, but he didn't seem to mind.

He gave me the rundown on the surgery and further treatment (I definitely need radiotherapy). I remember him saying up to 40% of patients need further surgery (re-excision) as the margins are not clear of cancer when the tumour is examined thoroughly in the lab. I said to him I was happy if he took bigger margins to possibly avert this and also as my right breast is larger. He acknowledged that then added he will equalize them (I thought wow - that would be good!).  I began to hope for an excellent visual outcome and hopefully no further surgery. I can't get my head around that breast tissue can be manipulated, pushed into new places and made to stay there?!

I asked about getting the node results and he said if I wake up with drains I will know there was some cancer found in my sentinel node, if not, then the sentinel node would have been found to be clear, and very likely in my case to be so (and as it turned out).

Next the anaesthetist popped in, another Peter, and another marvellous human being as far as I am concerned. Explaining in detail how it works. I was really interested to know how they know when a patient is fully under, and he said they can tell from readings from sensors. He explained I would have something injected to relax me in the theatre and then propofol to put me under, then gas administered through a bell like apparatus in the back of the mouth to keep me under, as propofol is not long lasting, but has a clear after effect when the patient wakes up, vastly superior to the old days of chloroform. He measured my neck for a tube, if needed (emergency? not sure). 

I walked through to the theatre and the staff introduced themselves, then I lay on the theatre "bed" and had sensors attached. 

A trainee anaesthetist had a go at finding a vein on the back of my hand, but it blew. I could tell it wasn't going to work, it doesn't really hurt when they find a good way in.  I was just starting to feel a bit anxious, that theatre setting can be unnerving. Then Peter, the experienced anaesthetist took over and quickly got the intravenous line in on my inner arm.  I was given the mild sedative and it was like instant six glasses of wine, and very pleasant.  I was being asked what I did for a living and answering back briefly. 

Then I woke up.

LIFE IS BEAUTIFUL

I wasn't sure the surgery was done? Yep, I was in the recovery area, comfy in bed, checking to see if I had dressings. Yes. Drains - none - so a clean lymph node and just that one removed (yay), I was completely pain free and my going home bag next to me.  The nurse asked what I wanted to do and I said "sleep". So it was a might as well go home situation. 

I went to stand up and was wobbly as anything - but in such a good head space. I apparently had a slightly green face from the blue lymphatic dye they use to trace the nodes they injected when I was under. The surgeon had also put a long lasting local into the breast area near the end of the operation, so one wakes up pain free. How nice!

My partner was called, he was there in no time, along with my daughter. I was taken to the car in a wheelchair and home I went.  My daughter said my face had gone blue now. I looked in the mirror when I got home and it was true, just faintly tinted.

Into my lovely comfortable bed and sleeping for three hours, interrupted only by not being able to keep any food or drink down. Each round of nausea came really quickly and was gone each time I retched up. I had been given two lots of anti-nausea drugs too. The nausea was usual for me, same as last year's operation, and no big deal at all. 

Next a visit to the loo and holla! the bright cobalt blue wee, as expected, from the second lymph node tracer dye, which double checks the gamma ray dye, same stuff making my face blue. 

Felt well, so thought I would take a first proper look at the surgery.  The right breast had a large blue patch over it (this will be like this for a month apparently) and there are two dressings, one under my arm where the lymph node was taken out and then I saw, and it seemed miraculous - the surgeon had done as he had said and pretty much equalized my breasts. How he raised up the errant lower one which had the cancer, is a mystery, but there it was. A lovely pair much improved! The right breast still a tiny bit bigger, which is good if I need any further surgery, there will be still lee way for a good cosmetic outcome. I am rather stoked.

This surgery was NOTHING like the hysterectomy eight months ago. But its probably the reason why I worried so much about this surgery. I drastically under-estimated the recovery and pain of a full abdominal hysterectomy, so over-estimated this cancer surgery. I assumed the breast would be an extremely sensitive place to have surgery on, but its not really.  An abdominal hysterectomy affects your entire body, walking, your core is impaired until it heals, little strength, with stomach muscles and all their layers cut through and re-attached - I literally couldn't even lift a sandwich for a couple of weeks after the hysterectomy and was not back to workable normal for three months. At six months I finally got total stomach strength back. So far I have to say, this surgery is poles apart. 

I am actually quite high from the relief that it is over, and so manageable. Also minimally invasive, yet all the boxes have been ticked to treat my breast cancer, of course, with radiotherapy yet to come. 

In two weeks I have a check up with the surgeon and the histology results of the tumour and node will be on hand. They will know everything there is to know about the tumour by then. I am pleased to know its at least five miles away from me, in some lab being coated in wax, to be sliced up, no longer in my body. 

Once again, all thanks and praise to modern medicine and how its done, with humans in mind. 

Breast Cancer: Treatment vs Disease

I am reading the "bible" of Breast Cancer books; "Dr Susan Love's Breast Book", 2010 Edition, with her next edition due in 2015. An almost erotic book title for a rather un-erotic subject. Breast cancer and it's treatment keeps moving, the understanding constantly evolves.

The book's dedication is to "those women who have died from breast cancer - or the treatment of breast cancer". A chilling but realistic introduction.  Clearly every treatment has a possible benefit and the opposite.

The following items in the book I found were revelations, that I feel are little known and of great interest:

30% of all breast cancers caught in mammograms probably do not require treatments, as they will go away in time by themselves, or remain dormant, possibly never spreading, but we just don't know which ones they are, so all found are treated with surgery, as a minimum.

So quite a portion of actual diagnosed cancers can be fought off by the body, dissolved or become dormant, with special mention of lifestyle changes, such as losing weight or stopping Hormone Replacement Therapy (something no woman should be taking, knowing what we know now). This improves "the environment", described below as a "neighborhood". I wasn't aware that it was accepted that the body can destroy established cancers!

Reading about genetics is fascinating. There is a huge section in the book on it and how the code gets corrupted - it doesn't happen easily - there are many mechanisms built into the genetic systems that have to fail for this to happen. In context of the genetic aspect, the neighborhood is an analogy for the environment. Thus ceasing HRT or losing weight (as above) being "neighborhood improvements" which could influence the cancer tumour to recede, become dormant or even disappear.  Like a "bad kid" in a "good neighborhood", keeping the "bad kid" in check.

39% of women having died from other causes, upon autopsy, are discovered to have breast cancer, dormant or otherwise.

Anorexic women hospitalized in Sweden before the age of 25 for this disease, have among the lowest incidence of breast cancer over their lifetimes.  A clear indication that less nutrition and calories is a good weapon in preventing and fighting BC.  HOW this works is still just a bunch of theories though and coincides, of course with women from lower socio economic situations getting it less too.

Women who have their ovaries removed to battle breast cancer (not prevent, but a treatment to starve tumours of estrogen), have less estrogen of course, but for some reason the overall mortality outcome is worse. It seems ovaries do not just decline into nothingness when no longer required for reproduction - it seems they are valuable in many ways to the body. Dr Susan Love states they do what many middle aged women do, they simply "change jobs" as they go into middle age.  And menopause is not so much a cessation of ovary activity but a series of fluctuations.  What it is ovaries are doing which lengthens lives still is not known or understood fully. The known part, of course, is that estrogen production is known to protect against heart disease, the biggest killer of all.

Among the conclusions in the book are:

You can't "win at every hand" - for example, if you have high naturally occurring estrogen you are more protected from heart disease, osteoporosis - but more inclined to get breast cancer, with all the numbers crunching harder, the older you get (sounds like me).

One can only be philosophical. But doesn't it all make sense? It does to me. Our biological strengths/advantages, such as the estrogen supply, can become or contribute to a disease, and despite the brilliant design or evolution of our bodies, we are not meant to live forever.


MORE ON SENTINEL NODE SURGERY AND LUMPECTOMY

I spoke to my surgeon recently and found out more about what will happen in surgery.  In regards to the sentinel nodes, they won't take all the nodes down the right side of my body no matter what, even if they find some cancer cells in the sentinel node(s).  So its like three possibilities, either just the sentinel node(s), as in one to three taken out for testing, and if no cancer cells are found there, the incision will be closed. If something is found then more nearby are removed, instead of all. He said even if the next group has positive nodes, whatever may be left behind will be dealt with radiation therapy, as the node area will catch some of that anyway and a bit extra will be given to the area if it looks like this situation. They are very careful with lymph nodes as they are valuable to the body as a draining and filtering system. Removal of them has various complications including the possibility of swellings and collections of water on that side of the body, something that can only be improved with various method, but not cured.

Additionally he told me, and this was new to me, once the tumour is removed it is taken away for an X-ray immediately to make sure the margins are clean/clear of touching the tumour.  If not clean, this is remedied within the same operation, to save a re-excision (another operation) at a later date. There is a chance, of course, that it still won't be completely clear margins, but it is good to know they are so very thorough, yet keeping in mind the overall health picture - less operations, anesthetic and as little as possible, removal of healthy tissue.

Well, getting a bit nervous now, to be honest. Not sure what it is that sets me on edge - perhaps the fact that there are three procedures on the agenda over two days, but it is all very unavoidable, so here goes, and I will update this blog when I feel up to it, hopefully within a day or two of surgery.

It feels so odd because, of course, I feel fantastically healthy in my everyday life. Last August I couldn't wait to have my hysterectomy; my large fibroid uterus was giving me terrible back pain, leeching my body of red blood cells and generally laying me out for more than a week per month with humungous periods (sorry, TMI folks).  I don't feel like anything is wrong with me this time?

The histology of the tumour I won't know until two weeks later, when I have my first post-surgery checkup.  I will be told how much radiotherapy I will require then, if any further surgery is required (I really hope not) and if tamoxifen will be recommended.

Over 2,500 women in NZ are diagnosed with breast cancer each year and have to undergo surgery.  New Zealand has one of the highest incidences of BC in the world, but unlike 30 years ago 80% of cases are now cured.

I am now part of the ongoing BC statistics, and have signed up to be a part of a statistical study of NZ BC patients.

I didn't expect to get BC, and I don't have a particular fear of the "big C", but nor did I ever think "it won't happen to me".  My maternal great-grandmother had breast cancer, originating with lung cancer (she was a smoker), complicated by diabetes, aged 73 (in 1973).  My maternal grandmother died of melanoma in her late 50s. My birth mother is alive and has diabetes.

Some time ago I read that anyone that gets old enough, will get cancer of some kind. It is just part of our built in "time bomb" genetics it seems.

An Unpleasant Surprize

EARLY STAGE BREAST CANCER, NEW ZEALAND

I am a 50 year old female.  This makes me a candidate for breast cancer by default. One in nine women in New Zealand will be diagnosed with breast cancer. As the median age of diagnosis is 59, I am a little on the young side for the fairly generic breast cancer I have been diagnosed with. Age 50 really snuck up on me, and I really feel about 37.  Was it time already to get serious about health, such possibilities etc.,?

Last year about August I had another female problem, large fibroids causing fairly massive blood loss each month. I was worried something very sinister was happening in there, but somewhat relieved that the diagnosed fibroids have little connection to invasive cancer. I was diagnosed as having two large fibroids, one about 20 cms diameter, the other about 12cms. I had a abdominal hysterectomy at the end of August where my 41cm in length uterus was removed (this should be the size of a pear, not a melon!).  Six weeks was predicted for return to full normality, in reality it took about twice that. I kept just my ovaries so that I did not go straight into menopause.

I was preoccupied, but just prior I noticed how my right breast had become slightly "annoying". I had put a little weight on so my clothes were tighter, but suddenly all my clothes were turning to the right as I wore them, my necklines rotating clockwise by an inch or two as a day or evening wore on. "How peculiar" I thought, and mentioned it to friends, and my partner.

Picture above: Xmas 2012 with my girls in my musical lineup "The Mermaids Dance Band" - see my dress (that's me on the right) turning to my right, exposing some bra in an annoying fashion. I have always had one breast larger than the other, but something else was going on . . . .

I am an intelligent woman, but this change did not set off any warning bells.  It really should have, but nor did anyone else think much of it except "that's weird". But "ANY CHANGE IN SHAPE OR SIZE" is a red alert for breast cancer. I thought it was just bigger, but there was something just slightly off about the shape too . . .

Another photo Christmas 2012, my dress turning to the right "by itself" again. (I am on the far right)

OK, so then I got the call, but I think I knew before I even went to the appointment, that it was not a false alarm, and I had never had a callback from a mammogram before.

A callback involves a manual feel around by a specialist nurse, someone adept at finding unusual lumps. She marked several areas in black felt pen to investigate further. Next I had another mammogram, on both breasts. Then an ultrasound to see what these lumps really looked like. The very last lump she looked at was the "baddie". I looked at the ultrasound screen and said "I don't like the look of that". The ultrasound doctor said "you have no point of reference" and I said "I know, but it looks so dark" (it also looked root like - like a small stubby carrot, a twisted postage stamp, with small branches, shooting left and right . . and if I recall one going downward?). She replied "cysts look much darker", so I concluded she knew it wasn't that.  

Finally, because of this thing's suspicious looking nature I was also given a needle core biopsy, which was not particularly uncomfortable, as two injections numbed the area, and I felt no pain as the staple gun sound went off each time - just the tiniest cold pinch as each the five samples were taken.  I turned around at perhaps the wrong, but quite informative moment, to see the needle deep inside the tumour taking the sample. It was actually very interesting.

I googled ultrasound breast cancer images when I got home, and knew immediately I had already seen something like these that day. 

At the Breast Screening Clinic a week later there was something of a wait for my appointment. The receptionist very kindly let me know this was not unusual, as the doctors are always waylaid before these series of appointments started. The date was 13 Mar 2013 - I thought "uh-huh" as soon as I realized my results date fell then. Usually only one in five women get a bad result from a callback.  That day, all ladies attending their results appointment got the same kind of news, I found out later.  I am not particularly superstitious, but it seemed a memorable date, and the prognosis of cancer, no matter how advanced or early, is a life-changing moment. 

As soon as I entered the room I spotted the outline of a woman's upper body diagram on the desk with a picture drawn on it, of a lump. I was handed tissues immediately, when informed "unfortunately it is cancer", tissues I did not use. 

I immediately felt like fighting and dealing with it, I did not have a lost, doomed feeling at all. In fact, most days since this prognosis have been extremely pro-active, positive, life-affirming and fully lived days. Nothing like this to give one a "boot up the arse" and a great excuse to give up drinking permanently. Much as I love my tipple, I figure it contributed to this. 

My liver was often busy processing alcohol instead of breaking down estrogen, the exposure over a lifetime, since onset of menstruation, is a common association with breast cancer, thus I had increased my exposure. It turns out my cancer is over 90% positive for ER and PR, which means it's growth is stimulated by estrogen and progesterone, from my still active ovaries. Alcohol did not cause any other particular problems in my life, but I sure could "put it away". Half a bottle of vodka at a card game, and 3/4s of a bottle of wine by myself on a languid evening, a couple of nights a week sometimes. I never "seemed drunk" either, but apparently it is doing more harm to the body if you are someone who doesn't seem outwardly drunk, when in fact, fairly intoxicated.

EDIT/NOTE: ALCOHOL AND BREAST CANCER

Alcohol is turned into a known carcinogen in the body, acetaldehyde which damages DNA. This is news to me. It is also believed to be the cause of hangovers. 

Additionally, sugar is something cancer loves, and alcohol is a kind of sugar that is used in the body the same way as any. So regardless of how busy my liver has been, my only regular intake of sugar, as I am not a sweets fan at all, nor a big bread or carb eater, has been alcohol. A thing of the past for me now. 

Among the things told to me to the day of prognosis were "if you are going to get cancer, this is the one to get" and that it was a "sleepy cancer", (that did however, definitely need removing, along with radio therapy afterwards). I sincerely hope they are right.  But this will not be known until after the operation, and I am afraid they were "sugar coating" it, as perhaps is part of their job description to go easy on people? This is however, only a provisional staging, based on what is currently known from samples.

During the removal of the cancer there will also be a SNL, a sentinel lymph node biopsy, which is standard practice and a very useful diagnostic method. I believe I will wake up with either just one lymph gland removed, or many (or possibly all), if any cancer migration is found in the sentinel (first) lymph node - the first one to drain from the area of the tumour.  This is tested with a radioactive dye, injected into the site of the cancer 24 hours prior at an Epsom Clinic. The next day during the operation another kind of tracer dye is injected and between these two the site's corresponding lymph node can be found (98% of the time), which is whipped out and examined, with a decision to remove more, for further testing if any stray cancer cells are found. Lymph nodes themselves filter the non blood liquids of the body and even try to trap cancer cells (and do). Thus sometimes they become lumpy with cancer cells but are also a kind of "guard" or first/second defence.

My cancer is 1.5cms across, about 8 cms above the nipple in my right breast, a very common place for invasive ductal carcinoma (IDC), which is what I have, along with an in situ kind called cribriform - its not uncommon to have a mix of kinds.  The recommended surgery is lumpectomy, which is the same as a partial mastectomy, often described as Breast Saving Surgery, which means they feel that they would rather save the breast with the possibility of the cosmetic outcome (cosmesis) being reasonable enough to not suffer too much loss of body image.  So I gather from this, they mean it shouldn't be too ghastly looking. Its fairly new to do this, instead of mastectomy, which is an option I have. The outcome of mastectomy with no radiation or lumpectomy plus radiation therapy, is on a par with each other. If lumpectomy is chosen then radiation is a must.

As the breast in question is the bigger, the nurses said (they may have been surgeons!) "we can do something with that" and "breasts are made of fat and it can be pushed around".

So this is my diary of knowledge, thoughts and prognosis so far. I guess I will become something of an expert. I knew little before the 13th of this month. I couldn't find a lot on the web about this, just horrible lengthy, medical speak links, aside from the recommended ones that came with the literature given to me that day, which were fine, but those not enough detail for me.  

DID I FEEL IT HAPPEN? FROM IN SITU TO INVASIVE CARCINOMA

I had another recall today.  A bit less than a year ago in the late afternoon I felt a peculiar reasonably painful sensation in my right breast. It was a feeling I have never had before, or since. Kind of like an itch I couldn't scratch deep inside the breast, a radiating, throbbing feeling, a little like a bruise happening in there, or in fact, something bursting, when I think back now. I am wondering if this is the day that the carcinoma In Situ (considered Stage 0 cancer and precursor to Stage 1 invasive) which must have been present before my current Stage, broke out of the duct, and invaded the nearby area? Perhaps the breaking out of the duct is something that would cause discomfort and unusual pain? I would think so and I clearly recall the feeling, it was absolutely unique, but it was gone by morning, and soon dismissed.

If anyone is reading this, I hope perhaps they will just keep in mind that even though they say breast cancer symptoms are slight or none, I had two, which I overlooked, and I am considered early stage. 

ANY CHANGE should be checked out, especially "wierd-ness", as was my case.

I always assumed tumours would have to be quite large to distort a breast or turn a nipple inwards, sideways or whatever, but this is just an assumption I had made, which was completely wrong. My nipple is turning slightly more to the right - all forcing in the same direction, caused by a knobbly lump just 1.5cms across, which is still very hard to find and feel, even though I know where it is! 

In New Zealand, health services try to get patients in for breast cancer surgery within 20 days from diagnosis. Mine will be more like 50, a combination of accommodating some of my work and the nurse that books the date being on holiday.  I was also told most people's surgery dates got blown out from Christmas just gone because they were two surgeons down in the Auckland area.

A NEW DAY: 

In the meantime I am enjoying what I still currently have, more than ever, as I have taken up more regular exercise, which peps up my mood, reduced my calories (I now weigh 63kgs since diagnosis, a loss of 3kgs) and am using the prognosis for positive motivation. I shall never drink again. It holds no interest for me whatsoever.  And just 3 or 4 drinks per week(!) triples the chances of breast cancer returning. As it is, having breast cancer automatically increases my chance of getting cancer again in the future, at any site, tenfold.  I am also living on pretty much zero sugar. Sugar feeds cancer, those cells apparently use 15 times the blood glucose normal cells use. There is a ketogenic diet that is rumoured to be effective for starving cancer tumours, where nothing is eaten than can turn to sugar and supposedly the tumours just commit suicide. No fruit, no bread, pasta, grains of any kind. The body makes sure the brain has enough glucose from stored fat, with the rest of functions prioritized behind that, making the greedy cancer cells last in line to receive their fix.

In three weeks the tumour will be removed and examined in detail, in slices, and I want to know everything. I have no idea how debilitating it will be, and for how long, or the visual results of the surgery.  My surgery will include a "hook wire" put into the tumour, placed there prior to the operation, guided by an ultrasound picture, to guide the surgeon to the correct area for the wide incision he will make to remove the cancer and a margin, along with a lymph node biopsy to assess any possible spread. The hook wire will be placed while a local numbs the area. Then apparently I drive five minutes to the surgery unit. 

Once fully healed (6-8 weeks) radio therapy begins and I will almost most likely be prescribed five years of tamoxifen to cease my hormonal production, thus going quickly into menopause. This is the treatment I am bummed out about the most. Such horror stories of menopause and I have no hint of it at all currently. Osteoporosis is something hormones protect us from too.

I had a pretty good experience last August getting the hysterectomy, and my childhood fear of hospitals is almost completely gone. That was a six week recovery time and breast surgery is much less, at two weeks, so perhaps that operation at least, prepared me for this one, which has more life threatening connotations, but is a less major operation. 

I am truly grateful for free mammograms and this early, but invasive, discovery. I drudged along to my free mammogram, but I have certainly changed my tune now. 

The main thing I want to say though, is that I still can barely feel the malignant lump, maybe, just. . . but its effect on my breast overall is much more obvious than the lump itself - it never occurred to me this is how breast cancer is?

But hullo, I did have another one to compare it to - ladies, we have two of these things, if one seems to have a mind of its own . . . . .

- Pauline