Refusing radiation treatments?

The hard part is... we can never be sure which group we're going to end up in after treatment.  Are we going to end up in the disease-free survival group?  Or the recurrence group?  Are we going to end up in the local recurrence group?  Or the distant recurrence group?  Statistics can't tell us that; they can only predict our odds.  Studies can't tell us that; they only report on trends observed in small, controlled study groups, which don't always translate the same way in the general population.  Unfortunately, much of cancer treatment today is hit- or miss, and hope-for-best.

And ALL breast cancer treatment is risky.  Every step of it.  Lumpectomy+radiation has its risks.  Mastectomy has its risks.  Breast reconstruction has its risks.  Chemotherapy can kill or save lives.  Targeted therapy has its risks.  And nothing can predict how it's going to affect an individual woman.  Educated guesses can made, but no definite conclusions can be drawn.  We have to grapple with the fact that treating breast cancer can be just as dangerous as the breast cancer itself, and we don't know how those risks are going to play out.

For example, in 1968 my mother had a prophylactic mastectomy for a lump that even the pathologist couldn't determine was cancerous or not.  Because it was the 1968, she, also, had a complete axillary node dissection.  All the tissue came back negative for cancer and she received no follow-up treatment.  No chemotherapy.  No radiation.  They didn't have targeted therapy.  It was decided that she, probably, didn't have breast cancer - especially since she remained cancer-free for the next 40 years - but, since survival rates in the 1960's were so poor, her treatment team decided to err on the side of caution.  Was the mastectomy necessary?  Probably not ... but, then, hindsight is always 20-20.

Despite the complete axillary node dissection back in 1968, my mother never experienced lymphadema.  Not one problem.  Ever.  And, yet, forty years later - after presenting with and early-stage IDC that her oncologist deems to be her "first-ever primary" - a sentinal node dissection, which, also, involved a Level 1 sampling of her axillary nodes has left her with a whopping case of lymphadema, that she is still struggling with.  Go figure!  The side that has no lymph nodes left, still gives her no problems.  The side that has had only five lymph nodes removed has left her with an arm that is, permanently, swollen and problematic.  And, yet, I, also, had Level 1 axillary clearance + regional node radiation to that side (which increases my risk for lymphadema) and, so far, nothing.

So, for what it's worth, (warning!  MY PERSONAL OPINION ONLY!!!)  I've come to the conclusion that all the studies, all the research, and all the knowledge that we've gained, thus far, in the war against breast cancer can, often, confuse- more than help in our personal decision-making processes.  For every solid piece of information we have managed to uncover about breast cancer, there is another piece of information that contradicts it.  Studies can, sometimes, provide valuable information about trends, but they are, often, so limited in scope and conducted among such, small controlled groups that the conclusions drawn from the data can be very misleading when interpreted out-of-context.

Our treatment choices - while they seem so numerous these days - are, really, quite limited.  Some great strides have been made in understanding certain aspects of breast cancer, but they haven't, yet, translated into anything concrete in the way of prevention or treatment.  And I find that so sad and frustrating.  What is comes down to is that each one of us feels compelled to inform ourselves to the best of our ability; often, refusing to accept the educated opinions/experience of those professionals who are in the best position to help us.  I wish I had a dollar for every time I've read on these boards about someone who is frustrated-, angry- and upset that her oncologist has disagreed with the research that she had done, so she is searching for a new oncologist, and, yet, never even considers the possibility that her information/research is faulty or, even, blatantly incorrect.  The blame is, usually, put on the oncologist/treatment team for being "out-of-touch", "incompetent", "misinformed" and the hunt is on to find an oncologist who will agree with one's opinions.  

So, I find it very disheartening, that so many women are so militant about the choices they've made that they, frequently - and, perhaps, unknowingly in their desire to help others - run roughshod over other's decisions, and only add to the fear- and anxiety being experienced by newly-diagnosed women.  As Beesie said a few "pages" back... this doesn't help.  And, after spending months on this board - and having, admittedly received so much support along-the-way from so many women - I've come to the conclusion that: 1) talking to other women who have gone through similar experiences can be helpful in an emotionally supportive sense; but 2) the best people to consult about your treatment choices should be your oncology treatment team.  We, as breast cancer patients, come loaded with a whole lotta emotional baggage and we're not always objective about what we've - personally - been through. 

Yes, sharing our emotional- and treatment experiences can be extremely empowering and informative for other, newly-diagnosed women, but we are not scientists or oncologists.  And, although, I've seem many, many very good- and objective discussions on how to interpret the results of various studies, I've, also, seen far more discussions that are self-serving and, frankly, terribly misinformed.  Yes, we should remain up-to-date with what's going on with breast cancer treatment developments.  But we, also, need to be responsible about what we promote-, support- and say to others.

In closing (and I know this will be an unpopular statement, but - again - I stress that it is MY PERSONAL OPINION ONLY), I would put it out there that, perhaps, in some situations, women should have more faith in their treatment team and use the study/research information that they uncover to open- and direct their discussions with their treatment teams, rather than take said studies/research information at face-value to make such important, life-altering choices.  We, all, have our biases and, I feel, that navigating our way through the quagmire of outdated data and misinformation on the internet is too full of pitfalls and hidden dangers to undertake on our own.

Ditto!  Awesome SelenaWolf, you have articulated what I have only thought!  I have a PhD and actually do cancer research and at the end of the day, I realized I had to trust my team if I were to make any decisions.  It helped that they were congnizant of my background in how they dealt with me, but it was truly more about trust than science.  It was an interesting lesson for me ;-).

There was a great NPR story yesterday (on ScienceFriday) about scientific publications, and the difficulty disproving articles that have already been published.  As a researcher, I am particularly critical when reading scientific journals ... some published research is better than others.  That said, being knowledgeable is good (knowledge is power),  it gives you enough backgroud to ask the right questions.  However, at the end of the day, a good treatment team is always your best bet.  

I would agree with what SelenaWolf said.  What I post is certainly just my opinion. I have no medical degree and feel that I need to trust my treatment team.  Still, I have learned a lot from this site and have received a lot of support here.  I just remind myself that many of us are inclined to post more often when there are questions or problems, and perhaps not so much on those days when all is well.   While there are many issues that arise, I try to keep in mind that the problems may seem disproportionate because many of us may not post as much when everything is great.  That's when we're out at the mall, biking, hiking, having a spa day, etc....  I hope those days come soon for everyone!  Thanks so much for all the support here.

Hi Maize and others who are interested,

I recently had a lumpectomy for breast cancer that turned out to be "triple negative" stage 3 with clear margins and had not spread to my lymph node .... phew ... (sort of).

The team of doctors that came into my waiting room one after the other two weeks post operation all suggested chemo followed by radiation.  I refused chemo flat out as the stats given to me by the chemo doctor would only decrease the return of the cancer by 8 in 100 for my case.  Yes that's only 8 in 100.  For that I was expected to lose my very long cury hair, have my immune system shot to pieces not to mention months without income as I don't have medical insurance.  I also saw my mum go through chemo and after 3 doses she didn't know who I was and passed on within weeks.

That brings me to radiation.  At the moment I've deferred it as a stalling tactic specifically to keep my sister and surgeon comforted - for the time being, I have no intention of going.

Instead I've decided to concentrate on a more healthy diet and lifestyle and trying to live in the moment, not worry so much and enjoy the time that I do have as we only have today.

I very much encourage all to watch a youtube clip by Dr Lorraine Day about how to beat cancer naturally:-

www.youtube.com/watch?v=0DYhyCu3DQY

It's a very individual choice though what feels right deep inside your heart and soul.

Best wishes to you all in your decisions.

Hi Infobabe, as far as I'm concerned I no longer have cancer as it was all cut out when I had the lumpectomy.  The node was taken out to be sure even though it tested clear when I had a biopsy previously.  I thought the surgeon had said the tumor was stage 3 but he could of well said grade 3.  I zoned out as soon as he had said no further surgery was necessary and I had clear margins etc. I knew from then I would be ok.

I must confess I don't have any pathology reports and so will request a copy when I have a standard check up next month however I'm happy in the information I do know most importantly that I am now free of my cancerous tumor and fortunately it hadn't had a chance to spread - it was all contained in a round ball and now the ball is out. This forum is in response to refusing radiation treatments which is what I decided to do.  As mentioned in my initial post on July 15 I said the doctor and team suggested both chemo and radiation.  Diet is just one component that I'm addressing in my decision to beat cancer naturally and by the way there is only a 30% chance it will come back that I was told by the radiologist himself if I do absolutely nothing at all.  My newly found wonderful holistic naturopath told me radiation emissions in general is our biggest problem and humans have not evolved enough to cope with this thus it's inivitable with our technology based lifestyle more and more of us will get cancer with one in two getting a form of cancer in their lifetime (those of you with PC's in bedroom good idea to unplug at the wall at night).  With that it's bye from me to this forum, I feel more drawn now to posting from the alternative treatments forum in future.  Thank you to Maize for starting off this forum and getting me started.  Please respect other's decisions even if they are not at all what you would do.  This is a very personal individual journey for each of us about what we can handle and what feels right

Jo-Beth

I agree with Beese and you need to know a whole lot more about your condition before you go the holistic naturopath route.  Refusing further treatment without knowing in black and white what you are dealing with is very dangerous.  

Diet cures nothing if you already have cancer and it is iffy if it prevents anything.  Check these boards.  Vegans, non smokers all kinds of clean life advocates get cancer.  

I watched that video and all it did was give me anxiety. I decided not to watch too much of that stuff. My brain just cannot handle it.

I am coping pretty well and trusting my doctors. I am also reading and doing due dilligence will my diet, which I have most my life. We will most likely never know what causes our cancers..we can like point at many things. The doctor in that film could have had a miraculous healing vs it being her diet or 8 step plan. I am happy for her. It is very hard to sort our situation under the best of circumstances..she gave me food for thought...but since cancer is not black or white..since there are so many variables. There are no magic bullets at this time. We all do the best we can.

I also would never decide treatment options without having and understanding my path report.  

Having and understanding that information in full is part of being your own responsible health advocate.  

Never heard of anyone who would prescribe chemo   "purely as preventative".   

And the thread is entitled Refusing Radiation treatments? (notice the question mark)

But hey, youre entitled to ignore or not look at your path report - thats your perogative.  Good luck! 

Ray - sorry to hear you arent feeling well.....maybe the switch will work out for you.   

Jo-Beth, chemo is a systemic treatment. It is given to address the risk that some cancer cells may have moved out of the breast into the body prior to the removal of the cancer from the breast.  Chemo's role is to track down those rogue cancer cells wherever they might be in the body and, hopefully, kill those cells off before they can take hold and develop into mets. Chemo can also kill off cancer cells within the breast however because chemo is such a toxic treatment and because it is systemic (i.e. it enters and affects the whole body), current treatment guidelines never recommend giving chemo to patients who have a risk of cancer in the breast area alone (i.e. those with a pre-invasive or pre-cancer condition). Treatment standards suggest that chemo be recommended only in cases where there is a more than minimal risk that some cancer cells may have escaped into the body, i.e. situations where the risk from the possible progression of the breast cancer outweighs the risk of the treatment itself.

In cases where there is nodal involvement or signs of vascular invasion, the risk that some cancer cells might have escaped is obviously fairly high and chemo is usually recommended. Chemo is also sometimes recommended even when there is no nodal involvement and no sign of possible vascular involvement. In these cases, chemo would be purely preventative, just as you suggest. However the need is a bit more obvious than it may appear.  In her book Dr. Susan Love indicates that cancer cells may have moved into the body, undetected, in as many as 30% of cases where there are no obvious signs, i.e. when the patient is node negative and has no signs of vascular invasion. This is why chemo is given even in some of these less obvious cases, if there are other factors that suggest that cancer cells might be particularly aggressive and may have slipped into the body (high oncotype score, large area of cancer, HER2+, triple negative). 

There's one thing to add to all of this, however.  The risk that rogue cancer cells might have escaped into the body is only present with invasive cancer - there is no risk of this with DCIS.  This is why chemo is never recommended for pure DCIS, even as a preventative. Chemo is simply too toxic a treatment - it comes with too many risks of it's own - and therefore chemo would never be given to someone whose only risk of cancer is in the breast itself.  There are enough less risky treatments (including surgery and radiation and hormone therapy) available to treat the breast area.

Because here's the thing. Breast cancer in the breast never killed anyone. It's only when breast cancer cells leave the breast and enter the body, and eventually take hold in a vital organ, that breast cancer becomes life-threatening.  This again is why chemo, a systemic treatment, is never given when the BC risk is only in the breast. But this also explains why even women who have bilateral mastectomies can develop mets sometime in the future. They develop mets because a few sneaky breast cancer cells slipped out of the breast and moved into the body undetected before the BMX surgery that removed the breasts and all the cancer in the breasts. It might take a short time for those cells to take hold and develop into mets, or it might take years (some women develop mets 10 or 15 years after their diagnosis and surgery). This is a risk that every women who's had invasive cancer faces.  It is the one key and very significant difference vs. those who have pure DCIS.  

So back to my point in my earlier post.  If chemo was recommended to you (or anyone), then the diagnosis was more than just DCIS; there must have also been some invasive cancer present.  Even in that case, if there are no obvious signs of invasion beyond the breast, chemo would be purely preventative, however there is a good rationale for why it is recommended.

Having said that, it's always up to the patient to weigh the risks of the treatment vs. the risks of the disease and make her own treatment decisions from there. If you are comfortable that you understand your diagnosis and the risks associated with it, and if based on that you have decided to skip chemo, that's your decision to make.  Good luck to you!

jobeth..  As I have posted a few times, I REFUSED radiation, but chose to have MX instead. I did not refuse radiation and choose to do nothing.

Jo-Beth, yes, chemo is more often prescribed to those who are triple negative because for these patients, hormone therapy is not an option.  But again we are only talking about women who have invasive cancer.  Triple negative means ER-, PR- and HER2-.  HER2 status for DCIS is not considered relevant at this point in time because the information about how HER2 status affects DCIS is all over the map. Additionally, Herceptin, the drug which is used for women who have HER2+ invasive cancer, is not approved for women with DCIS (although there are a couple of small, limited use clinical trials underway).  Because of this, HER2 status often isn't even tested for DCIS.  When it tested, it's only done for the record, in case new information comes up about HER2+ DCIS in the future.  At this point in time there is no difference in treatment for someone with HER2+ DCIS or HER2- DCIS. The net of all this is that "triple negative" currently is not a meaningful diagnosis for DCIS.  And as I mentioned in my earlier post, chemo would not be prescribed for DCIS, whether triple negative or not.

I appreciate that at this point in time, having had your surgery, you are confident that you no longer have breast cancer, whether invasive or DCIS.  It's very possible that this is true - for many women surgery is all that's necessary to fully remove all the cancer.  The problem is that there is no way to know this for sure and that's why treatments such as radiation, chemo and Herceptin are given.  The simple (and often not well understood) truth is that chemo and radiation are always prescribed as preventative treastments, unless someone is diagnosed as having mets (in which case the chemo is purposeful and not preventative), or unless it is known that someone has 'dirty' margins (i.e. there is virtual certainty that there is a small amount of cancer left in the breast and therefore the radiation is purposeful and not preventative). The fact that you were recommended to have chemo "as a preventative" does not in any way suggest that your diagnosis was DCIS.  The fact that you were recommended to have chemo suggests that your diagnosis was not DCIS.  Otherwise, if your diagnosis really was DCIS, your doctors were negligent in their recommendation, because chemo presents a greater healther risk than the DCIS. 

As for whether or not you would know your diagnosis, I'll tell you that in 6+ years here I've seen hundreds of women who thought they knew their diagnosis but upon a closer reading of their pathology reports, realized that they'd been wrong. It happens all the time.  When we hear the diagnosis from our doctors, it's all new to us and it's easy to misinterpret or misunderstand.  You don't have a copy of your pathology report but you started out in this thread saying that your diagnosis was triple negative, Stage III, with no spread to the lymph nodes and that you had a recommendation from your doctors that you have chemo. That is all consistent with an invasive cancer diagnosis. What I'm unclear about is why you think you had DCIS.

Hopefully now, however, you no longer have any breast cancer.  Since you are not planning to have any additional preventative treatments, hopefully the surgery did the job and all your cancer was successfully removed.