Has anyone turned down radiation?

I turned down radiation and decided to go for a double MX.  I originally had a lumpectomy and all the margins were clear. I was too afraid of the side affects and my radiologist was so kind and actually told me that she does not like to give Rads to younger people because of the other possible side affects/cancer risks. I am 34 years old. I have never been happier with my decision.

rianne, how about getting a second opinion?  I totally understand your reluctance to do rads based on your mx and other factors.  But one thing I notice about your stats is that you had a positive node -- which possibly indicates that there is some aggressive component to your bc, in spite of its small size and Grade 1.  I don't know, but I would possibly get another opinion or even two -- just to hear what other rad oncs think about your situation.  I ended up talking to two and making one of them get an opinion from someone else at his institution.  It took me several weeks to come around to deciding to do rads, but every rad onc I talked to pointed out concerns about my path.  I finally did them -- after finding a rad onc who assured me that most of my concerns (heart/lung damage, lymphedema, etc.) were extremely unlikely in my situation -- and I have no regrets.  I know it's a very tough decision, but I think maybe more input would help you decide for sure, one way or the other.    Deanna

Rianne2580 my previous post was for Sanbar8771......As far as your concerned I have heard all the SE that you mentioned in your post..........I have also spoken to many women on this site who had no problems at all, so like I said its a crap shoot.............

It shocks me that your BS did not call you with your path report....My BS did my biopsy, (not a radiologist as so many do), called me within 2 days and told me the result of the biopsy................did a lumpectomy.......sentinal  node biopsy, and called me 2 days later to tell me there was "no node involvement", and the size of the tumor was much smaller then it showed on untrasound..........in 2 more days he called again when all the pathology was in, and told me I was ER/PR + HER2-, what grade it was and how happy he ws................He then got together with the M/O..R/O in a meeting (and I saw them before surgery also arranged by my BS), and they were made aware, and got full copies of the surgery, biopsies, and the pathology..

Now I was at a Regional Breast Cancer Center, not sure if that makes a difference......Nothing leaves the hospital since they have all the Depts. right there, waiting and ready for all your slides......My treatment was discussed, and agreed upon, and given to me within days......................

If you read the above information you can see what the decision was.......My BS, and my RO, agreed on everything.........the M/O. just gave me some stats which I already knew anways, she just made me think a little more about what I should do.................then I decided to buy the insurance..............Hope you do well, but give this a lot of thought...........Even at my age I don't want to battle this again if I don't have too................Now the RO made a good point..........she said "if you forgo the Rads, you may do fine, and never have a recurrance, however, if yo udon't and you do have a recurrance, you will be "older then you are now", and then may not be able to handle treatment.......................That made a lot of sense to me, and no one can argue that as we get older our health does not get better..................So its an individual decision..........although my 6 children are on board with doing Rads,..........Hopt you do well.

My tumor was 1.1cm. Even with the 2mm margin in 99% around the tumor, she didn't like the 1.2mm margin at the one spot.........So I am going to have Rads done...........I may regret it.....I may go through fine, but I won't know if I don't................and the thought of one of those little "suckers" getting out scares me more then the Rads do...............I just don't want to take the AI. that is what I don't want, but being ER/PR+ doesn't leave me much choice according to the M/O.

My tumor was on the right breast, and I had a heart attack in 2007, but of course that is not an issue being it is on the right.......Don't like the lung thing cause I have  asthma (not serious), but the cancer scares me more then the lung scarring.........................Trust me I was sitting on the fence for all this treatment since I am 76, but really too scared to take the chance of making a bad decision now, that will affect me later...................Sometimes even when you get a good report it is still "not a good report when it comes to decisions"............the best report is the letter that says "your fine come back next year"..

Rianne - they usually would only recommend rads after an MX if the cancer was close to the chest wall. They can't get all of the breast tissue when they do an MX.

srbreastcancersruvivor - Radiation treatment is to the whole breast - followed by 5 to 7 boosts to the surgical area.

I had 30 the first time 25 whole breast and 5 boosts. The other breast, I got 23 whole and 7 boosts.

I would strongly suggest you get a second opinion as well.  The first rad onc I met with wanted to do rads on everything in sight, including the nodes next to the breast bone, even though my tumor was nowhere near there and I had 6mm margins.  He minimized the possible side effects, and didn't even mention lymphedema!!!  The second rad onc spend a couple of hours with me, and even called the pathologist to discuss my margins and other findings directly.  The second rad onc said I was in a borderline area for rads, and that she'd be comfortable if I opted for rads, but would also be comfortable if I declined them. 

The most important distinction for me was survival benefits v. recurrence prevention benefits.  From what she said, rads gave me zero survival benefits, and only a 10% decrease in recurrence.  She said 90% of women with my pathology are radiated for no reason - 85% will never recur, rads or no.  5% will recur, rads or no.  That leave the 10% who recur with no rads, but would not recur if they got rads.  But what really made my decision was the fact that rads made absolutely no difference in survival rates for me.  

My suggestion would be to get at least one other opinion.  Ask about survival benefits as well as recurrence prevention benefits.  Then mull over what you've heard and do some independent research - some of those scientific journal articles make heavy reading, but you can at least get an idea of what they're talking about. 

It appears from your sig line that you are also in the grey area, which is probably why you're getting conflicting views from your medical team.  Do your research, then go with your gut feeling.  If your gut tells you to go for rads, then do it.  If your gut tells you it's OK to decline them, then decline them.  Everyone is different, and the decision that is right for you might not be right for someone else, even if you have the identical pathology.  Make the best decision you can with the facts you have on hand now.  And once you make your decsion, go with it and then don't look back.  

Good luck!

I continue to be very happy that I had full-breast & boost rads following my lumpectomy. I consider it an excellent insurance policy.

I did, however, turn down tamoxifen.

CTMom 1234, and Chelsea23........thank you so much for your post........Both of you made different choices for treatment..........I can see both sides of what you chose to do......Chelsea 23...you went 15 years without a recurrance.  That would be good for me since I am 76, and face it what are the chances I will live to be 91..........stats say slim..........So all things considered If I got 15 years without doing anything, that would be great.......on the other hand can I be sure i would be as lucky as you................hmmmmmmmmmmmmmm

CT Mom, your choice sounds like a good one too.  I really do not want to take the Femara....I have enough aches and pains now, so adding to what I already have doesn't sound like fun, however maybe I will be one of the lucky ones who don't get any SE, but I'm not thinking that will be the case...............

I do believe my R/O made a good p;oint when she said "if you don't do anything, and you get a recurrance, you will be older, and we all know as we age our health doesn't imporove, it usually gets worse........so would I be able to handle treatment then......................I thought the diagnosis was horrible.................at this point that seems like the easy part.........if we could just get it out, like an appendix, gall bladder, or a tooth gone bad, but that is not the way it works, so we make decisions, and hope we made the right one, that will save us, and not be destroyed by the  SE of Meds...............Quality of life is really what it is all about..........otherwise you are just existing.......thanks ladies nad hugs to you both.

Kalyson..........I didn't go 15 years without a recurrance, Chelsea did, and I was commenting to her that 15 years would be fantastic for me since I'm almost 76 now.........that would make me 91, if I got 15 more years.............

Actually going today for them to do more x-rays.........This is getting very old, and I havne't even begun Rads yet..............

CTMom,

 Why did you turn down Tamoxifen? I am also thinking of not taking it. The side effects are not worth it and it doesnt assure anything anyway. I also had the lumpectomy and radiation. Just wondering your reasoning on the Tamoxifen. I feel pretty strongly that I may not take it either.

Loucks2 .. I turned down Tamoxifen and Arimidex.  I tried both and couldn't deal with the SE's of severe nausea and vertigo.  I lasted 6 weeks on Tamoxifen and one week on Arimidex.

My tumor was Stage I, Grade 2, ER/PR +, no nodes, and I was 51 at diagnosis.  I had also had a prior total hysterectomy .. so no ovaries to produce estrogen. I had a lumpectomy with 6 mm margins all round and 35 rads treatments.

The difference in my survival/recurrence statistics was very low with not taking Tamoxifen or an AI, as opposed to taking it.   I think it was approximately a 3-4% difference.

I recently celebrated my four year survivor anniversary!

Bren

Kalyson,,,,,,,,,sorry I misunderstood what you were saying.....I'm sure the hormones do decrease, and trust me I'm sure anyone would be happy with 15 years at the age of 76..........Happy I'd be a moron not to be doing the happy dance.

duckyb1 - I totally know what you mean that the rad prep work is already getting old and you haven't even begun the radiation treatments yet. Oh, yes, the logistics are a pain in the butt. Hated the drive to my zap place every gosh darn time, but just take it one day at a time. I do have good inner peace that I did them, and so will you when you look back in a few months.

Loucks - Some people find comfort in taking tamoxifen even when the estimated % benefits are minimal, I think because they'd regret not "throwing everything at bc." Think doctors also sometimes feel this way (maybe out of fear of lawsuits??). I appreciate very much that my rad onc. was very honest and used statistics for my medical position, each woman should know hers; the chance of estimated recurrence for me would go from something like 4-5% to something like 2-3% if I went on tamox. vs. not. I'm very analytical and wanted to remove the emotions from this, so appreciated her sharing with me that if she had to face this decision at my age and stats., she'd be nearly 50-50 --> she said she was "60-40" to take the tamoxifen, not for the lumpectomy-rad breast side's benefit, but to proactively try to minimize the chance of a new case in the other breast (because I'm only in my 40s and hence have a lot of years hopefully ahead of me). No hard sell from her, and she also clearly confirmed that some of the side effects, beyond just hot flashes which didn't worry me although I am not even peri-menopausal yet, are quite a reality. I want to know that the normal menopausal things I'll feel someday are just that, and not to have to worry that everything is maybe because of the drug. I take no meds right now, this would have been totally it for me. She did give me a prescription and I continue to be open to taking it if my situation changes. Never say never to anything.

However, within the last 60 days a reputable study came out that again showed that rads lowered recurrences significantly, but that there was no further measureable benefit when comparing lump+rad+tamox. group to the lump+rads (and no tamox.) group. The benefit of rads is solid, and I continue to be glad I did that "insurance policy"!!!! Adding tamox. is not.  And to take 1825 pills (365 days * 5 years) + add additional worries about uterine problems was more stessful to me than not taking it. But we all must weigh our own benefits vs. risks, as well as risk aversion levels so that we sleep well at night and have no regrets . Good luck.

P.S. Edited to add that I did have rads on the left side. For those lefties like me who are concerned about heart involvement, see if you can have the teatments in the prone (face down) position. I did this for all but the 5 boosts at the end, and it is considered safer. I also liked that it felt more private than face up.

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When I grow up I want to be an old woman. Jan.'10 lumpectomy:3+cm grade 2 DCIS+1.75mm grade 2 IDC found in final path (surprise),stage 1a,0/3 nodes,25 full+5 boost rad zaps.
Diagnosis: 11/1/2009, ER+/PR+