Refusing radiation treatments?

Interesting discussion. We are all well-intentioned, and it really is hard to be neutral when someone else is going through something that we've gone through and we want to be helpful and share our experience and our learning.  We've all had our breakthrough moments, those times when we think we've got it figured it out, and we want to share those too. "I was where you are now and it's been such a hard journey and I've learned so much and I want to share it!" That's a normal human reaction.   

It took me a long time and a lot of reading of this board to realize that my experience is exactly that - my experience, and no one else's.  I remember how easy my MX surgery was for me, and I remember posting about that and telling others who were about to have a MX that it's a really easy surgery and recovery.  And then one of the women that I posted to turned out to have a horrible experience, with lots of pain, difficulty healing and a long and difficult recovery. I felt terrible for her, and worse because I felt that I had misled her.

In that same vein, there is another old-timer on this board, someone I have a tremendous amount of respect for, who I used to butt heads with all the time. We would post in the same threads, sharing our experiences and offering advice, but what one of us would say or suggest was often the complete opposite of what the other would say or suggest.  Initially I think we both thought that the other person didn't understand or was simply wrong or narrow-minded, but after a while, after reading the board and realizing how different everyone's experience is, we both started to incorporate each other's experiences and suggestions into our posts, writing more generally and less about our own experiences, hereby providing a much broader perspective. The fact is that the breast cancer experience is different for each of us, physically, emotionally, in how we deal with our diagnosis and how we make our decisions, in how we view risk and in what we fear and what we are willing or not willing to do to reduce our risks and our fears, in what's important to us, in how we see the future, in how we get comfort and peace of mind, etc....

I know that I sometimes come across as the hall monitor but it is well-intentioned, and it comes from seeing too many situations where women who are scared and confused end up being even more scared or confused - or misled or upset - by something that someone has written in a post. I've done it myself too many times and I try really hard to not do that now (not always successfully). After this amount of time, I figure that if I'm going to stay on the board, my goal should be to help those newly diagnosed figure out what's right for them - not what's right for me. I realize (sometimes grudgingly) that what was right for me shouldn't factor into it at all.  Because of that, I often hesitate to share my own experience because I know that there's no way to know whether someone else's experience will be like mine or whether it will be competely different. Instead I try to offer up a range of possibilities of what the experience might be like. I rarely share the thought process I went through in making a decision because I know that everyone thinks differently and what was important to me might not be important to someone else. Instead I try to present the information as neutrally as possible so that the anyone reading can pick and choose what's important to them - and so that no one gets offended or upset or scared by how I present the option that they selected. 

I know that everyone is well-intentioned, and most posts where people are sharing their experience really do come across as being no more than what they are, someone sharing their experience.  That is valuable and can be helpful to others as they make their decisions. But, Shayne, as you aptly put it, many here are very passionate about their decisions. Sometimes that passion comes across too strongly and what's said can be hurtful or harmful to those who've made a different decision, or it might present one option in an unrealistic light. 

dmorgan2, I'm sorry if you were upset or offended by my post and I apologize if you were. What I was reacting to was a shift in focus of the whole thread, not a single post. I actually thought you were very careful in how you positioned your experience so that you wouldn't offend others who made a different choice nor unduly influence anyone who wasn't inclined towards choosing a MX. 

I appreciate your words to me, Beesie. --thanks--

Youre right.......when you read the stories, it just rang true.  I didnt even second guess my decision for rads.  Just made sense for me when I think of the microscopic cancer cells that could possibly be in my breast.  Mine is on my rt, so I didnt have the concern of my heart.  An mx would not have been for me for so many reasons.  We all have different pain thresholds, and what we can live with in the aftermath.  What will let u sleep at night.  I remember someone saying in the beginning, that youll know, youll just know what you should do......and thats how it was for me....  I hope you get some answers soon Maize....it will give you some peace. - keep us posted

Akinto - I know how you feel.  Ive been staring at my Aromasin Rx for a couple weeks now, not wanting to take it.  I know I should at least TRY it......i just dont want to deal with SEs......I had a horrible menopause.  just horrible.  The women in my fam of which there are many, just breezed thru it.  Lucky me.  Having a young daughter at home is my ONLY reason for doing it frankly.  I dont want to look back and wonder if it would have made a difference.  Still.....the Rx sits......

Brachy radiates from the inside.  It does penetrate into the surrounding tissue a few centemeters as well.  And I was told if there were a recurrence, i could still opt for radiation in that breast.  My cavity was also close to the skin, but I was candidate for a SAVI device, which is different than balloon device. For someone like me, who's cancer was smaller than a pea, it made sense to me, with fewer SEs and risks.

I think thats why they have such criteria for being a candidate for brachy.  A more invasive type cancer that has more of a chance of coming back or having another primary is usually not a candidate for brachy.  

I have DCIS, and I am opting for a mastectomy...which may be sealed by the results of my genetic tests, but I wanted to respond to this post for a few reasons. One is, I lost sensation to my breasts anyway due to Lumpectomy. Lumpectomies are not void of causing that effect. I remember asking my then surgeon if my sensation would ever return, she looked at me like I had three heads...sure I was glad I did not have cancer then, but that same area is now the high risk DCIS.

Second, not all MX touch muscles. The DIEP does not. You should have very normal results after you deal with the initial surgery. Sure MX is drastic in some cases but in my case, my pathology is such I will be snipping away at my breasts for the rest of my life and frankly I am done with it. Sometimes, we have to strike back, take control and move on with life. I will be so glad when this part of the journey is behind me. I go back for another biopsy on Friday to my right breast as they missed my chip. I get a sentinel node biopsy in left and I am marching forward with my decision for the MX in the near future. I see PRMA in a few weeks for my consult. Genetic tests are back next week I think...none of this is fun...but at least we get to choose our own way for whatever is presented to us. Hoping my other biopsy is nothing worse than we know now, but I am learning there are surprises around every corner. My first needle biopsy said benign, my breast MRI said clear...then my lumpectomy showed all kinds of stuff...so...taking no chances...

Maize (and everyone else), I understand your concerns about radiation.  In reading all the articles that you've linked, it's clear that radiation presents very real risks of heart disease, sarcoma, another breast cancer, etc. etc.... When you read all those articles together, as I just did, the case against radiation seems overwhelming.  With all those risks, how can radiation possibly be worth the risk? 

The problem is that very few of the articles that you linked provide any order of magnitude of risk. Or if they do, they talk in relative terms rather than absolute terms. What I tried to do in my earlier post was find studies that include data on the absolute risk. That's where the picture becomes clearer and starts to change. Here's some of the absolute risk data from the articles and studies that I linked earlier.  

Among women who had radiation:

- There is a 71% increase in the risk of sarcomas.... which takes the risk from 0.28% to 0.48%, a 0.2% net increase.

- There is a 0.5% increase in the risk of lung cancer (but this risk is almost entirely among smokers). 

- Over 15 years there is a 1% increase in risk for all types of non-breast secondary carcinomas (this number would include the lung cancer and sarcoma numbers, as well as all other secondary cancers).

- For those diagnosed from '85 - '89, the 15 year mortality rate from cardiac disease among those with left-side breast cancer was. 5.8% vs. 5.2% for those with right-side breast cancer, for a net difference of 0.6%.  As radiation regimens have been changed, this difference has been steadily declining.   

As for the report that showed that radiation "increases the risk of a more aggressive form of cancer occurring by 30 times", as I read the article that you are referencing here, that's not how I interpret what's being said. This was a lab test with mice that looked at the development of breast cancer stem cells after radiation; the study showed that radiation does in fact create new breast cancer stem cells (called iBCSC). The report said that these iBCSC have a 30-fold increased ability to form tumors. No estimate was made on how many new breast cancers develop as a result of these iBCSC, nor whether any resultant breast cancer will be any more (or less) aggressive. This study simply talks about what happens to cells in the breast after radiation. We have dozens of studies among hundreds of thousands of women that confirm that overall, radiation reduces breast cancer recurrence rates by approx. 50%. Breast cancers that might develop as a result of the the radiation (and the formation of new IBCSC) would already be incorporated into these results. In fact the author of the study about iBCSC specifically states "The study may carry enormous potential to make radiation even better" The article goes on to say: "Radiation is an extremely powerful tool in the fight against breast cancer," he said. "If we can uncover the mechanism driving this transformation, we may be able to stop it and make the therapy even more powerful."  In other words, he is hoping these findings will lead to an improvement in the 50% benefit from radiation that we see today. 

Maize, I'm not trying to convince you or anyone else to have radiation.  But in reading this thread, there's a lot of discussion about all the bad things that can happen because of radiation - and those are all true - but there is little to no discussion about how often those things really happen.  So it gets back to what I said in one of my earlier posts. If someone has a high risk of recurrence and will gain a significant benefit from radiation (a 10%, 15% or greater reduction in risk), then the benefit vs. risk scale tips strongly in favor of radiation. But if someone has a low risk of recurrence and will only gain a small benefit from radiation (let's say only 2%), then the scale may tip in favor of not doing radiation. For those in-between, it comes down to a personal choice of which risk or risks you are more comfortable facing. For some that's an easy choice; for others, not so much.  You can lament that none of the options are good or safe or risk-free - I would certainly agree with that - but that is unfortunately the reality of being diagnosed with any disease and it's even true for those who are been found to be high risk for a disease.  My family is full of people who've had to choose to take drugs, or not take drugs, because of the risk of disease. Every disease presents risk and every treatment comes with risks.  DCIS and breast cancer are not unique in this regard at all. 

I know that this doesn't make the choice of radiation or no radiation, or the choice of Tamoxifen or no Tamoxifen any easier.  But I see a "Woe is me, DCIS is awful and so confusing" theme in so many of the posts recently (not just on this thread and definitely not referring to any specific people) and I can't help but think that this attitude does make it more difficult to deal with the diagnosis and deal with the decisions. It's a diagnosis of cancer (or pre-cancer, for those who prefer to think of DCIS that way). It stinks. It confers new risks you never had before. There aren't any good choices or not many easy decisions. You can lament that or you can accept that.   

Its not even so much the distrust in doctors.......is that they really dont know if treatment will work and if its worth the risks.  Its the great unknown, more so for the women who went before us.  Toxic treatments, not something you want to just jump in and do without thinking about it first....even IF your doctor tells you to.  

I should add that I chose mastectomy instead of radiation, but I knew that I was going to do something... doing nothing was never an option... and I chose MX over rads for all the reasons I mentioned, but also because it was more aggressive, which was something I wanted... but had I had 4 positive nodes for example, I would have had MX AND rads... Rads are scary to some extent, but they can also save your life... luckily for me, I could avoid them by having the MX.

And on a side note, I feel the same way about tamoxifen. I started that in December, and my only SE is hot flashes... as someone who was 98% ER+, I really had no choice.. You do what you have to do... 

I was IDC, no DCIS detected.  Because the lump was dominant, I opted for lumpectomy, knowing that radiation was a "must" under those circumstances.  I was aware of the risks, but I, also, understood that many of the more serious risks were very, very rare.  Like the risk of developing some form of uterine cancer while taking Tamoxifen: less that 1%.

Radiation treatment has come a LONG way from our mother's day.  It's more refined, more focussed, and much, much safer than it used to be.  Since I was going to be receiving radiation on my left side, I had several "work ups" and simulations before treatment commenced to ensure that 1) my heart was situated deeply enough in my chest that the radiation beam would not being going anywhere near it and 2) as little of my left lung would be affected.  A 3D, digital CT scan was done, which was, then, used in simulation several times to ensure that everything would go well.  Other than developing what I would term as a medium-grade burn to the skin on my left breast and under my left arm (I, also, received regional node radiation to my axillary and clavicale areas), I had few side effects other than a bit of peeling.

It's now, nearly 4 months since my last treatment.  I'm hiking nearly 20 miles a week, and biking an additional 15 miles every weekend.  I am not having any issues with my heart (no palpatations, etc...) or my lungs (no radiation pneumonitis, etc...).  In fact, I think my fitness/activity level has surpassed my pre-cancer levels.  My skin healed beautifully and I'm not having any problems with it when I'm outdoors in the sun, although I still wear a 60+ SPF sport formula (can't sweat it away) - as always - when I'm out hiking and biking.  I didn't even develop a "radiation tan".  And I have no hint of lymphadema (and I know that it can take several years to develop), which can occur with regional node radiation, even though I only had the Level I axillary nodes removed for sampling.

So, yes, I agree.  There are risks - however small - with radiation and the decision to proceed with radiation should be well-thought out and considered carefully.  And you need to feel comfortable with what you are doing and able to live with it going forward.  That said; however, radiation need not be something to fear when the benefits are carefully weighed against the risks.  It's like driving a car.  We, all, know that every time we get behind the wheel of a car, we are - technically - placing ourselves at risk of being involved in an accident.  And, yet, most of us are perfectly comfortable with that, knowing that the risk will be small.

Radiation - hell, chemotherapy! - isn't for everyone.  But I don't think it should be feared, either.

BLinthedesert

Good for you.  I am happy for you.