Has anyone turned down radiation?

LucyLane

I'm in your exact same situation.  Don't want to....(and wasn't going to..) but risks of not doing, are very scary, too.  I waffled back and forth between lumpectomy and mastectomy.  Ultimately, I decided to go with lumptecomy (which took 3 surgeries to get clear margins)..and after being "strongly but gently" pressured (by four doctors..including a plastic surgeon), I changed my mind.  This being said, (and besides the initial concerns I've had about 'left-breast" radiation, and associated risks with that), I am still extremely concerned about altering my chances of having some reconstruction on that breast, in the future.  I know this is extremely complicated by the radiation.  My PS said not to even think about it for at least 12 months.

LucyLane

CTMOM1234

Just a quick reply to bdavis's post to me, but I don't want to hijack the original poster's thread.

For my specific medical status, the benefits of tamoxifen did not outweigh the risks. Everything is based on statistics, of course no one knows what the future brings, but I was told tamoxifen would increase my chance of not having a recurrence from 95% to 97.5%. I am ER+/PR+ pre-menopausal and am content with the 95% rate and happy to not be worrying that the normal aches and pains of aging naturally into and through menopause and beyond are as a result of the drug, which truthfully has toxicity to it. Some people find comfort in taking it, some do not, and everyone must address this based on their own statistics and comfort levels.

I am open to changing my opinion about this at any point. However, that recent study I'd previously mentioned in this thread (and of course each study has it's own pros and cons, people use studies sometimes to support their decisions and biases) suggests that there is little added benefit detected between the lump+rad group and the lump+rad+tamox. group for my statistics.

For my personal statistics, I do not consider a 2.5% reduction worth the downsides of tamoxifen, but again, each person must look at their own estimated % reductions as well as feelings about the whole thing and then be content and at peace with it.

bdavis

Lucy... after MUCH deliberation, I have decided to go with the mastectomy and not the radiation... just too many variables and when looking for the best odds for me, MX had better odds... although I have 4 doctors tel me to just do radiation... Very very hard decision.... probably the hardest decision I have ever made and hope I will never need to make a decision like this again... Praying I have chosen correclty.

LucyLane

Betsy,

I know how extremely hard this decision is.  I am still vacilating back and forth, in my mind.  The prospect of altering my left breast tissue with radiation, which involve permanent changes to skin and limited, if not impossible reconstruction in the future (outside of TRANS Flap procedure, which I can't ever see myself doing...) is really not something I want to do. 

I'm sure you, like me, REALLY wish a third option would appear <sigh>.

If you do go through with the masectomy, please do let me know how it goes, and how you feel about it.  I am three weeks away from radiation, so I've got a small window of time to change my mind.

I keep envisioning the final possible outcome...a fried shriveled breast (like a shrunken head, or something) that I can't stand...or...a nice looking breast with a nipple that won't "erect" (if can get around the 10% chance I'll lose it after MX)..that I might be able to feel, "sort-of", but probably not much.  How will I feel with implants?  Would I regret that choice?

BTW, have a very very close friend that has lost both breasts (I was there thru all of the treatments, chemo, reconstruction, hellish surgeries).  She has told me repeatedly...again and again...that she would go with lumpectomy\radiation option in a heartbeat, vs. MX with implants.  She has emphasized that I would "grieve" like no tomorrow, to lose the sensation of having a functional nipple.

My thought with that is...could I live with having just ONE that I can feel normally?

I just get sick thinking about it..but I have to chose soon.

Hang in there...

Lucy

peggy_j

bdavis sounds like you made the right decision for yourself. Yeah, the decision make process sounds excrutiating. Wish the docs could give us more specific info for each of our cases. Good luck with your treatment. We'll be pulling for you.

LucyLane, I'm sorry to hear your friend had such a hard time. FWIW, I know several woman who are 15-30 year survivors of BC who had MXs and have no regrets. (the 30 yr survivor had a small tumor at age 31, but lumpectomies weren't offered at the time. She knows other women who were Dx'd years later, had lumpectomies and recurrences, so she's glad she had the MX.) I also know a woman who had a MX about 13 yrs ago and who said, looking back, maybe she didn't need it. But she's still glad she did because she was a worrier and didn't want to constantly worry about a recurrence. I think these decisions are extremely difficult and each woman has to choose for herself, but I wanted to share that not all women who gets a MX have such strong reactions. If it's any help, the advice I got from my counselor is that whenever we make decisions with large unknowns, the goal is to be able to look back and have no regrets, regardless of the outcome.  (FWIW, since my tumor was 0.5 cm and grade 1, I chose lump+rads)

CTMOM1234

Lucy - Although each person's experiences are so very personal, I can assure you that radiation was so much more mentally worrisome for me than the reality. I'd be hard pressed to even notice a difference between the zapped side and the non-zapped side now that I'm a year out. . . except for the lumpectomy scar which is certainly smaller than a mx scar. I had a good "chunk" taken out with the lumpectomy (it was a partial mast. with over 3 cm of dcis + a little idc) and then had 30 zap treatments and was surprised that I'm still wearing the same bra -- somehow the breast has a way of filling things in so I must say everything looks good. Don't believe what you may believe about breast shrinkage or skin thickening or whatever odd things are out there or supposedly going to happen if you have rads -- it just wasn't at all the case for me and for everyone I know like me.

Bottom line: I'm in my 40s and just really wanted to keep sensation in my breast, which is the case. Plastic surgery isn't for me, and I wanted to keep what I had even if there was a dent or whatever (but there's actually not). I was given only 2 options: lump+rads or mx, and in my opinion, it was so very worth having the choice (many don't) and am grateful to still have both of them. But whatever you decide, you must be at peace and have no regrets.

bdavis

Hi again Lucy... I think when deciding what to do, you need to think about your case in particular and your personality... For me, I only NEEDED lump and rads, and my breasts are really of equal size after lumpectomy, cancer side is a little smaller, but I was told I could lose 20% on cancer side with rads... but that wasn't what has pushed me the other way... For me, I have  a pappilloma in cancer breast so already need surgery and they are wwatching something on good side... so due for an MRI... I can't spend every six months have tests and biopsies and worrying all the time...

Also, I have a history of ADH, so I worry about new cancer, and I worry about the damaged skin and possibility of future reconstruction.

I am going to New Orleans for a bilat MX and DIEP/flap reconstruction, using my own tissue, because I just couldn't see myself getting implants... and I will get a tummy tuck as a perk. I know it will be a big surgery and longer recovery, but I am hoping that at the end of the day, I will have cancerless, warm soft breasts and non-radiated... and if I ever were to need rasiation in my future I still have that option.

Those were all of my considerations... plus fear of rads on my left side  and scatter... I have a friend who ended up with breast cancer due to radiation as a teen, so I didn't want to expose myself to future problems.

OHHH... and biggest reason... odds of local recurrance/new cancer drops from 22% or more down to 2%.

LucyLane

To all:

Thank you all SO MUCH for your candid and thoughtful responses.  I can't tell you how much this thread means to me.  I've never had so much difficulty making a decision in my life.

I guess, to be absolutely honest...I'm very concerned about the ability to "fix" the results of the lumpectomy surgery.  I wasn't large to begin with.  If anything...I had considered augmentation in the past, for that reason (before I found out about BC).  So...I was already dealing with those feelings before (and quite honestly, my husband weighs in on this, too, because he has not made it a secret that he would have liked for me to do that, also).  So now...have large "slope" where deep channel was made (top pole).  Looks like a ski slope <Ick>  I am really unhappy.  My doc was on the borderline of recommending masectomy (I had a score of '7' on the 1-9 scale...so she let me know that NOT having radiation wasn't an option, if I didn't do masectomy (skin-sparing/nipple sparing). 

I am so depressed today.  I actually called my BS today to let her know I am on the edge of reconsidering again.  If not.. radiation is 3 weeks out...

Lucy 

cycle-path

For many people with BC, there is a third option -- intraoperative radiation therapy (IORT). It's not applicable to everyone, since it's not used on very young people or in later-stage cancers, and apparently it's not available everywhere, but it's worth checking out if radiation worries you.

IORT doesn't involve pain, multiple treatments, tattoos, or burning. It minimizes radiation exposure to healthy tissue (heart, lungs, ribs, and other breast). I had it in January and the resulting texture of the irradiated breast is only minutely different from the other breast. I think eventually there may be no difference at all.

Here's a brief explanation of IORT: http://www.cancercenter.com/breast-cancer/iort.cfm and a longer one: http://www.xoftinc.com/assets/pdf/xoft_whitepaper_IORT.pdf

In the strongest possible terms, I urge all people facing the possibility of radiation to check out IORT. You won't be sorry! 

LucyLane

Hmmm...wish I hadn't already had lumpectomy surgery.  Would have been nice if this had been suggested.  I had 4 options presented (mammosite, 4-1/2 week external,whole breast, Accelerated Partial breast).

Momma

I find all this discussion fascinating. My daughter was diagnosed in Oct/10 at the age of 27 (she's now 28). No family history. This damn disease doesn't care about age. She had a lumpectomy. It was 1.6cm with clear lymph nodes and clear margins; stage 1 but grade 3. The course of action was to have chemo then radiation. Just before she started chemo there was a conference in the area and her case was discussed. It was agreed that she should not do rads because of her young age and the risks of future cancer in 20 years or so; so a mastectomy was recommended. And so she'll have reconstruction at the same time as the mastectomy. It was also recommended to have implants because the muscles taken from the stomach might affect any future pregnancies (if there will be any). So I get the feeling that doing rads is safe but not at this young age. So chemo was finished last week and the mastectomy will be soon. Just wanted to share my story.

bdavis

Momma... I am having MX and recon and not getting implants, but using my tissue and NO MUSCLE will be taken... i am doing the DIEP flap which is similar to TRAM but no muscle is used... I urge you to look at the NOLA thread... the surgery is microsurgery and only plastic surgeons who have done tons of these should be considered... Not all PS are qualified... I actually flew to New Orleans for a consult and it is an incredible facility down there... I can honestly say I poo poo'd travelling at first, but when you want the best, you go to the best...

I saw a local PS who offered lat flap and implants and then saw Dr Allen in NYC who pioneered the DIEP flap but ultimately chose NOLA (New Orleans, LA) Center for Restorative Breast Surgery. Your daughter is young and should be given all options... good luck!!

Momma

Thanks bdavis. Good information. I'll pass it on to her. It's great to hear others' experiences/knowledge. It's such a big help.

mollyann

Yep, Nats, radiation has no overall survival value. It helps one out of ten women prevent local recurrence. I didn't have it. I'll take my chances since the numbers also mean rads has a 90% chance of not helping recurrence.

Everybody is in a different situation.

cycle-path

LucyLane, strictly speaking you can still have IORT. They will have to open you back up, but it can be done. 

LucyLane

thanks for the suggestion.  I already called my BS to discuss reconsidering surgery (vs. RADS).  I will ask...I did a quick google, and it would seem that this is an option offered locally..but I don't think my surgeon (pretty sure of this) can operate at the hospital it is offered at.  At least I have something to work with...

Just call me "Ski-Slope" Lucy

cider8

I'm currently having to decide on rads.  I'm meeting with my RO tomorrow to find out why I even need it.  I just had a bilateral mastectomy (with DIEP recon on NOLA--Betsy, you'll do great!) and a third cancer was found during surgery.  I decided on bilateral mastectomy because I had a mucinous tumor (1.5cm?) and about 9cm of DCIS, plus 3 'suspicious' spots on the other breast (ended up no cancer on that side, but abnormal growths).  When I was opened up, that third tumor was found, ended up a 1.2cm IDC and 1 positive node.  I for sure need chemo, but I'm not sure why radiation is suggested.  I told my MO that I don't want radiation and a more aggressive chemo was suggested if I don't do rads.  Soooooo, apparently I am able to decide.  I'm keeping an open mind, but I really don't want rads.  I just had the mastectomy, reconstruction, I had 21 nodes removed, I had clean margins.  I don't have my path in front of me, but I just found out from my PS that the margins might be close....?  But still clean.  I am most concerned about increasing my risk for lymphedema and what it will do to my skin/reconstruction.  I'm 39.  The waiting is hard.  I still feel bamboozled by the 'surprise' invasive tumor.  I was all set to 'just' have bilateral mastectomy and tamoxifen.  I'm glad to read about other's experiences.  It's hard to dig through so much to find an experience close to mine.  I'm finding it hard to shift gears from surgery research to chemo and rads research.

bdavis

Paula... I would get a few opinions and just listen to what they say... You are a gray case... if you any ONE of those cancers, rads would not be necessary, but the combination may push you to the other side... I was told by ALL doctors that with MX, I would not need rads... and all doctors said I should have rads and no MX, but agreed that MX was understandable. I thin if you are on the edge with close margins, 3 cancers, one positive node, perhaps rads would be prudent... AND whatever damage is done with shrinkage can be fixed at stage II... I hear you about rads because I have chosen MX over rads, but its more about increasing my odds of no recurrance and less about the rad damage. Which side are we talking about?

CiaoVino

i'm so relieved to see this thread. i am currently going through chemo (finished July 8th!!!) and supposed to start radiation after that. and ever since i had my lumpectomy, my anxiety level seems to be through the roof.

i am 29 years old and have a very strong history of both breast and ovarian ca in my family (my mother is an 8 year breast ca survivor!). however, i tested negative for BRCA. my breast surgeon (who i trust and think the world of) told me that because i was negative, i could opt for a lumpectomy. and then said "but i feel obligated to tell you that most young women in your position would choose a bilateral mastectomy." well...at that time, back in march, i was just so hell-bent on getting the cancer out and not making any big decision that i chose the lumpectomy. one week later, i was sobbing in his office, feeling as though i made the wrong decision.

fast forward. i don't want to risk the effects of radiation...whatever they would be for me. i'm young, i'm single, and for a girl who rarely wears v-necks because she hates the look of cleavage, i've become obsessed with my boobs. if the cancer ever came back, i was told i would have to have a mastectomy. well...i don't want "cancer" to make my decisions. i don't want to give it that control. it doesn't deserve to. so, while i'm scared and think it's unfair to face these decisions, i feel i am doing what is best for myself.

i am currently in the process of finding a plastic surgeon and second breast surgeon. i am a nurse and had my lumpectomy at the hospital i work at...and, while i love my surgeon, i am not comfortable having the mastectomy and reconstruction there.

thanks for everyone sharing your thoughts, such a helpful thread...it makes me feel "normal."

peggy_j

Paula, when I was first diagnosed, my nurse navigator gave me a flow chart and there were about 5 situations where they'd recommend rads even with MX. I don't have it in front of me, but  I remember the first one was "young" (I'm 46 and they keep saying I'm young). Also the location of the tumor. Sorry I don't have the info right here but it's reasonable for your RO to tell you why he's suggesting rads. You said the margins might be close. My understanding that they want 0.2cm (2mm)  margins.  I hear you about the shifting.  Everything about this experience is hard and unwanted but I think the whole research-and-decision-making phase is difficult. And the waiting. arg! If it helps, several women told me that once they made their decision and began treatments (chemo, rads, etc) it became easier in some ways. That was true for me, too. 

ktab96

This is a good thread.  I am in the middle of deciding what to do.  I am considering the SAVI 5 day and turning down the estrogen suppressent becasue of the side effects even though I am a stong ER/PR +

AnneWisc

The decision making is truly awful.  You have to make several decisions with only partial data, and any one of them is of life-or-death significance.  I found it easiest to focus on one major decision at a time.  That cuts down on the amount of information you have to cope with.  Good luck to all who are facing these issues.

Beeb75

I also chose BMX in hopes of avoiding radiation, but my first radiation oncologist opinion suggested I get it, and a second opinion at a different hospital concurred. For me, also, the factors were young age, grade 3, and a positive node. 

Radiation does offer a small survival benefit (meaning it prevents breast cancer death in a few women, I think it's 1 out of 4 or 5 who get rads) but more importantly, it prevents a local recurrence which would require more surgery, more chemo, more hormonal therapy, etc.

julianna51

Just met with the radiation oncologist this morning and he is recommending radiation for me.  I was so hoping with the BMX that I would not have to go through it.   Unfortunately, I have a very narrow margin at one place and he said I have a 15% risk of reoccurence...which could be dropped to less than 5% with radiation.   Still considering a second opinion...radiation gives so many risks....but a 15% chance of reoccurence....I don't like those risks either.  Just feeling really blue with all today.

duckyb1

Have 4 more boosts to my Rads.......................I would say, it was not bad...........if it means assurance, don't hesititate...............My RO calls me her Poster Child for blue eyed, blondes who get Radiation therapy...............I did very well..........everyone is different.....................a little red, slightly tired, but not till this final week..............I'm glad I chose to do this.  Was gonna forgo it, but my kids said "do it".........glad I listened.

CTMOM1234

duckyb1 - Congrats, you're so close to the end that you can taste it!!! The boosts were easy breezy and a good opportunity to let the zapped area start to recover. I'm like you, I continue to be glad that I did it,

duckyb1

I would do the Rads over again, if someone told me my Lymphedema would go away when I was done...............Believe me I will take Rads over Lymph, anyday..............It is horrible, and is for life, at least Rads are over in my 36 treatments........Went from Surgery, to Rads, to Lymphedema, and then to friggin Femara in 1 more week, with all its side effects............................cancer........the gift that keeps on giving....................

elimar86861

duckyb1, sounds like you sailed thru' rads pretty well.  But I have to say that we also sometimes call rads the gift that keeps on giving.  Some have rib pain that lingers for years.  Lung issues that develop 6-12 months after you finish.  Also, rads may affect LE too.  I say this because there are some women who have had zero nodes out, but have gotten LE anyway and it was likely from the rads damage.

I did gert rads too.  Part of the "package deal" with lumpectomy, a clean up operation.

I can easily see why rianne2580 might want to opt out of rads and, of course, all choices are at the individual comfort level..  I think the recurrence rate is something like 2% when you have had Mx.  rianne2580, if you do skip rads, what are docs planning to do about your positive node, just hormonal therapy or has chemo been mentioned?

duckyb1

slimar......just hoping that nothing else happens after rads.  I am aware of all the late side effects;but just sope I;m one of the lucky ones...................Hell, I can dream can't I. hahahha

duckyb1

elimar sorry that is what happens whe  you type all wrapped uo in compression bandages.......hit a wrong key.  just changed your name