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.

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