Refusing radiation treatments?

It's nice to know that my 30+ years spent analysing research and writing research reports for school and work have given me a skill that I can actually use in real life! 

Beesie - you are a true gem xx 

We have an expert among us!  - thank you again Beesie. Yes, indeed, we do all deserve to know known statistics specific to our own case. It should not be considered something that makes me a "difficult patient". This is not-forth coming to me. And a lot of other women in my country, I imagine. 

I had a very non-commital response from my RO, who got back from holiday yesterday. She gave me no reply to the statistics I gave, just that she was either willing to speak with me again, or cancel the RT. I am still waiting on her willingness to get particular with my case.

Beesie - I wish I could put a big LIKE next to your post! 

"I would just want an uncomplicated, comfortable life." 

Ah, but there it's all in the eye of the beholder, isn't it?  For me, having had a MX with reconstruction, I believe that rads would have provided me with a much more uncomplicated, comfortable life - if only I'd had that option (which unfortunately I didn't). Believe me, there is nothing uncomplicated about a MX with reconstruction; it might be easier with a MX alone, but not everyone is able to live with that choice. And even at that, for some, just a MX ends up being very complicated. 

not sure how someone would think a mastectoy would end up with an uncomplicated life...have read enough postings of folks with mastectomies that seem to have just as many (only dif) compications as me with the lumpies and rads

I can tell you that last summer when my last mamo had stuff on it that needed biopsy, I spent several weeks wrapping my head around the fact that if anything had appeared, I would have had no choice but to have a mastectomy.  At no time did I consider it to be an simple choice or one that would be without complications.  I am single, live alone and while my pals are great, I would have needed help after the surgery managing recovery.  Since these things never occur at easy times, my brother was waiting for a match for a cell transplant for his late stage hodgkins. 

My family said, they would work something out but life is complicated.  It is a personal choice that hopefully I never need experience but it may occur and I am prepared for those complcations.  You are fortunate that you have not needed to consider a mastectomy.

There are no easy choices here. I did say, PERSONALLY.



More and more is hitting the media about rad damage to the heart for anyone who had rads to the chest. It is a given that there will be lung damage. When I questioned the RO about it, he said they are hard to miss. I know the prone position has better results but I guess we need to shop for that. Not available everywhere.



Anyway, I started a thread on this question. No answers yet so it may need a bump. Maybe no one wants to answer. It seems to me that most go for reconstruction. That just prolongs the agony. A relative just had a double MX with recon. They had to be taken out because of infection.



I know this is more problematic for younger women and I respect why they want recon. I have a BC.org friend in a nearby town and she is happy with the flat chest and took off on a trip to Europe. Are there statistics on this issue? Seems to no one cares much on the aftermath so we end up with anecdotal.

Infobabe, I provided a link to a report that includes references to many studies on this... those are the statistics that go beyond the anecdotes. 

We need to be very careful to not draw conclusions from a few individual cases.  Your relative who had to have her reconstruction removed is a rare case. There certainly can be issues with reconstruction, but most women do not get to the point of having to deconstruct. In fact most women adjust to their reconstruction and some even love it. So to make a statement that reconstruction "prolongs the agony" is scary and horribly misleading.  As for your friend who decided to go flat, I'm glad that she's happy and it's great that she headed off to Europe. But her example doesn't mean that everyone who has a BMX without reconstruction will have the same good results, and frankly it doesn't even mean that your friend might not sometimes be bothered by numbness or tightness.  I've had on-going issues with phantom itching and muscle aches from my reconstruction but do I ever mention it to anyone in my daily life?  No.  And I took off for Europe too.  I'm sure that some women will reply to your post asking about a MX without reconstruction, but they too will only be providing their own individual experiences - and that's exactly what I try to get away from when I provide information to those struggling with this decision. The simple truth is that no one knows what might happen to any one individual who undergoes a MX with or without reconstruction.  So to make that decision, it's not someone else's individual experience that counts; it's the average of all experiences. Looking at all women who've had this procedure, what is the likelihood that this will happen?  What is the risk that that will happen?  

Rads needs to be evaluated the same way.  Not by looking at individual examples, but by looking at studies that try to assess the overall experience and risks.  The following recent study indicated that 0.9% of 50 year old women who have breast rads will suffer a "major heart event" as a result.  This was based on rads done during the years between 1958 and 2001; in all likelihood current protocols will bring this number down.  Breast Cancer Radiation May Increase Risk of Heart Disease

The studies discussed earlier in this thread about cancer development from breast cancer rads suggested that 0.26% of women who have radiation breast cancer may develop leukemia, and 0.7% may develop another cancer.  Here again, this data was collected based on older rads protocols so today the risk is likely to be lower. 

With regard to lung issues, while a significant percent (I've read in the range of 25%) will develop transitory radiation pneumonitis, the following report on 1624 women who had rads between 1968 and 1985 found that 5 of the women (0.03%) developed permanent scarring as seen on their chest x-rays. Radiation pneumonitis in breast cancer patients treated with conservative surgery and radiation therapy

Those are some of the long-term risks.  What's critcally important in comparing the side effects and after effects of treatments is not blend or mix together temporary and/or short term problems with permanent and/or long term problems.  Without question the majority of women who have rads endure some short terms issues.  Probably 100% do.  But what percent suffer permanent or long term problems?  The studies I've seen (and quoted above) put the numbers in the range of 2% - 5%.  To my understanding, the vast majority of women who have rads have few if any lingering side effects, beyond the first year or so.  

With a MX, there many also be a number of short term problems, and again, probably close to 100% of women are affected. Looking longer term, 100% of women will experience some numbness and permanent loss of sensation that will last for the rest of their lives.  Some women aren't bothered at all by this - but others are bothered enormously. And from the studies I've read (some included in the link above), approx. 15% - 30% may experience permanent long term pain or discomfort of some sort. That's where I think the difference lies between rads and a MX - the percent of women who will be affected for years or their entire lives.  

Infobabe, now I understand where your other thread came from. I think perhaps you are focusing too much on individual experiences. I also think it's hard to extrapolate based on just what you hear first-hand because it's not the whole picture. I am pretty private in "real life" about my breast cancer journey, including my mastectomy. Even my best friends don't really know what a tough time I've had with surgery, chemo, etc. and what issues I face as a result of my BMX. From the outside, I'm carrying on as normal for the most part. Here on BC.org, I am much more open. At the same time, when others facing surgery post with questions & concerns, I don't necessarily lay out the worst-case scenari. There's a hard balance to strike between being honest & candid, but not scaring those just starting treatment. Especially when the decision is already made (or there is no choice), there just isn't a point to expounding the long-term risks & complications & pain that some of us face. So I think here, too, you may be finding an over-simplified, more positive view of MX (and probably any other treatment we face!) 

I wanted to refuse radiation treatment so, so badly. I even put it off a couple months. But everyone on my medical team recommended it. One thing that helped me accept this treatment was using the USC/Van Nuys prognostic index on my own, to figure out that I was definitely in the group that should not skip rads. My doctors never wanted to give me any numbers, so I had to push and ask  what they thought my personal risk of recurrence was, and my MO finally said 20%. As Beesie pointed out, 20% risk of DCIS or invasive breast cancer is a LOT higher than any risk of serious damage to my heart and lungs (< 1%). And next time it could be invasive and I might need lymph nodes removed and chemo, etc.

I am an athlete and I did not make this decision lightly, knowing they would be radiating a certain amount of heart and left lung. My tumor was against my chest wall and maybe that is why I was not offered prone position. I asked about other protocols, but they are not recommended for young women or women with DCIS. I will say that although I did have some immediate side-effects, they were nothing compared to friends who have had MX. I did not miss a single day of work, I had full range of motion, I did not need to take narcotics, and although I did need some special ointment and bandages at the very end, this was nothing compared to my friends' drains.

At my last mammogram, there was a new area of concern in my right breast, so I did recently think about these options again. And I decided that I would definitely go the same route on the right side if I could - just another lump and rads. Much better than major surgery. Luckily, I didn't have to decide because they sent me for a fancy 3D mammogram called tomosynthesis to get a better view of what was going on in my dense breasts, then decided I did not need a biopsy or even a 6-month follow-up. Phew!

ballet,

I had a small left breast DCIS and lumpie was done just above and to the right of the nipple. I had full breast rads and my chest wall and area next to underarm took the brunt of the Rads burns. I asked the RO on more than one visit before and during to show me how much of the heart and lungs would/could be affected. I went thru the Rads thinking it would barely touch those areas but judging by the burned area it didn't 'skirt' the lungs/heart.  All I can do now is pray that I don't get heart/lung disease. Thankfully I had the Canadian protocol of 4 weeks vs 8 because my poor chest skin would have melted away. I did all the right things with the creams,etc during Rads but still got the terrible burn. It took a while but once it healed the skin is back to normal.

Yes, facts are important.  But the facts are different for everyone, and that's one of the most important things that anyone making this decision - or any treatment decision - needs to understand.

Courage, you are correct when you said that "I believe the 30% relapse rate combines all types of tumours including both low & high grade."  And that's why I believe that the 30% is actually a pretty meaningless figure. If someone has a small single focus of low grade DCIS, and good surgical margins after a lumpectomy, her recurrence risk, without rads, could be as low as 3% - 4%.  On the other hand, if someone has high grade comedo-type DCIS that is multi-focal and spread across a large area of her breast, even with good margins her recurrence risk could be in the range of 40% or higher.  And with narrow margins, her recurrence risk could be even higher than that - I recall reading one study where the recurrence rate with this type of diagnosis was 60%.  So I wouldn't want either of these women to be making their radiation decision thinking that they have a recurrence risk of 30% risk, because that could lead to the wrong decision for them.

The other fact about DCIS recurrence that is important to understand that even with close monitoring, when there is a recurrence, approx. 50% of the time the recurrence is not found until the DCIS has evolved to become invasive cancer.  At that point the cancer might still be early stage and highly treatable, but treatment might need to include chemo and, for those who are HER2+, Herceptin. And with invasive cancer comes the risk of mets, and that's a whole different risk than what women with pure DCIS face. So for this reason I would caution those who have the less favorable DCIS diagnoses, and therefore the higher recurrence risk, from skipping rads.  Yes, rads does come with the risk of some very serious side effects, but if you are healthy and don't have other risk factors for these diseases, the risk is actually very low.  It's all a question of weighing the risks of the disease (a breast cancer recurrence that has a 50% chance of being invasive) against the risks of the treatment.

I do completely agree that there are many women with DCIS - those with favorable diagnoses and good surgical margins - who can opt out of rads with little added risk. To me the take-away message that is most important is that every woman struggling with the "rads or no rads" decision needs to talk to her own doctors (and get 2nd or 3rd opinions if your doctor isn't giving you all the info you need) in order to understand the risks that she faces based on the specifics of her diagnosis - the size, grade and focality of the DCIS, the size of the margins, her age, any other health concerns or conditions she may have - so that she can make an educated and fact-based decision that's specific to her own case and right for her.  With DCIS, whether it's a decision about the type of surgery (lumpectomy vs. MX), or a decision about rads, or a decision about hormone therapy, there is no one-size-fits-all answer.

and?

Hello; Your post is exactly my sentiments. How did you respond to treatment in the end? Radiation or no radiation? I am leaning towards no radiation. Not sure if this is the right choice. I like my lung and do not want to end up with rib cage and bone crumbling later on down the road. Please let me know how people are doing after radiation, and those that chose not to.
Thank you folks.