Wednesday, June 19, 2013

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:













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.



4 comments:

Emily Walsh said...

Great post Pauline! Found it to be super informative and appreciated that you shared your personal thoughts and experiences. I was reading a few of your other posts as well and had quick question about your blog. I was hoping you could email me back when you get the chance, thanks!

Emily

Pauline said...

Hi Emily, get in touch anytime, mermaids @ woosh dot co dot nz

Gwendolyn Roberts said...

Cured of TNBC!
I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com don't be shy just speak to her today.

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