QuestionI had a wide local excision [WLE] right breast inner upper quadrant in May 2010 and sentinel node biopsy. 6mm tumour. I have great margins - 12mm-16mm. I told surgeon to go at it unconservativelyand he did. I am T1a, N0, MO. I have rare cancer called tubular and cribiform [lessthan 2%]. Their mortality rate is so low its almost the same as normal population. Ki67 is also less than 1% so its as slow growing as it is possible to measure on thescale. Oncologist Professor tells me I have a trivial cancer - weird to hear those two words conjoined! No adjuvant therapy as it can only benefit me 30% of 1% ie., 0.33% BUT mortality and morbidity many times greater than this. Radiation Oncologist finally admitted after solid probing by me that RT can only give me 3% benefit against recurrence. No RT is 95% - with RT its 98%. Bizarrely [to me anyway] he still recommended full blast RT 6 weeks with boost. He also [to me] downplayed or failed to mention risks of RT to such an extent I felt he was doing this deliberately in order to ensure I adhered to what he recommended. I have read your impassioned pleas to other women to have RT, so I do understand your position, but I guess I am asking you this - Question 1 where do you draw the line on RT? Would you recommend it at 3%? 2%? 1%? Or only not recommend if it was a negative%? I want to know if you can ever conceive of a situation where the benefit is so tiny its time to question RT's worth. FYI To me, subjecting myself to whole breast RT with boost for a measly 3% benefit is not worth it, especially when I know that if there is a recurrence in the same breast - one that may be of a nastier histopathology than the one I have now - then second RT is not available and its straight to a mastectomy. I worry about wasting my one shot at RT on a trivial, indolent cancer where the Oncologist tells me the greatest danger posed to me is over treatment. I also have other conditions involving my skin, including acute dermatitis - it can take years for skin wounds to heal and that is years of misery. My skin is very sensitive - last mammography on the recall the operator basically wrenched my breast from my under diagphram wall, splitting the skin open. I understand 80-100% of local recurrences of BC [depending on which study you cite] are in the same quadrant as the original tumour, yet the Radiation team did not even offer me partial breast irradiation to the affected quadrant, which would have conferred almost all of the 3% benefit of RT [2.8/3%]. I felt like they wanted to radiate 3/4 of my breast for 0.2% benefit!
I also later learned the RO researches in the area of RT "boost", his study is still recruting patients including at the hospital I saw him, [he appears to be applying boost to all women at the Cancer Centre and when I meet up with them locally I am seeing alot of bad burns] but when I read about boost RT its all about using it for higher risk women, which I am as far from being as you can possibly get.
The interaction with the RO left me distrustful of him personally, his modus operandi, his disdain for providing information to patients and his lack of commitment to informed consent. I had using all my forensic skills to drag medically pertinent information out of him that my surgeon or Oncologist would just reveal to me in ordinary discourse, without any struggle or pressure from me. Without any snide put downs or condescending remarks either. I actually know someone who works in that RT unit and who freely confirmed to me their modus operandi is not to tell patients the facts about RT and to evade questions as much as possible as they find the more information they give people the less likely they are to have RT. I come from a strong patient rights background and I am committed to informed consent philosphically as well as in practice. This RO set off every professional and personal alarm bell I have. I have tried hard to separate out my personal dislike of the RO and the way he went about trying to manipulate me and deprive me of medically relevant information to ensure I went along with what he wanted, from looking cooly at the facts, the stats etc and coming to a decision about RT that makes sense to me without my deep mistrust of him operating as a confounding factor.
I am now organising myself for the ongoing surveillance and I have researched plans from major western countries. I have dense breasts so mammography is not reliable for me as others[the low Ki indicates that the tumour had been there for over 13 years and was misses over bi ennial mammographies for 12 of those years], very tender breasts almost always, the tear under my right breast from the last rounds of mammograms [it occasionally will split open again if pulled] and my blood pressure spikes 30 extra points with mammographic compression. Here is my second question - what post surgery surveillance regime do you recommend for someone who has had no RT and no adjuvant therapy, with dense but extremely tender breasts and who does not want to wait for a palpable lump to appear to act but who finds mammograms extremely problematic. Are MRI's an option and and if so, how often do you recommend? Apologies for the length of this but I know I am in an unusual situation and wanted to ensure you had the facts.
AnswerFirst of all, no one can force you to have radiation therapy. So if you do not want it the case is closed. The risk that you should develop a new cancer in the same breast is somewhat less than 1% (0.845% to be precise - I have used the current risk rate of Swedish females to develop a breast cancer to calculate this since I do not know the current Australian rate but I doubt that it is very different from the Swedish one). So that risk is also very small. However, I can agree that the benefits from any radiation therapy or chemotherapy in your PARTICULAR case do seem quite small. I have myself had radiation theapy for a prostate cancer. The radiation dose I received was quite higher than what you would receive for a postsurgical breast irradiation (7000 cGy/rad in my case) and the structures in my irradiated area (urine bladder & rectum) are much more sensitive to radiation than those of the thorax. Even so I have to tell you that the side effects of my treatment were not in any way so serious or severe that I had any reason to regret that I had insisted on radiation therapy instead of surgery! It has also worked well - so far. My PSA is down from 8.8 to below 0.05. Back to you. So in conclusion I have a certain understanding for why you do not want any radiation therapy or chemotherapy. On the other hand if such treatment should be given, it should be given now. Later is a far worse alternative. But again the choice is yours! Good luck!
P.S. For follow up in your case I do recommend breast MRI scans. Since there is no postsurgical treatment and we want to be as sure as possible it should be done AT LEAST every 6 months from now on.
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