radiation after bilateral mastectomy?

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Nicoleb
Nicoleb Member Posts: 10

HELP!  I just finished chemo. (AC-T) on 6/23/11 and found out, rather belatedly, that I am in a "grey area" in terms of needing radiation.  I am 37 yo, 36 at dx, and had Stage 2B invasive lobular carcinoma with one involved lymph node.  Because of my age and the one node I am being told that I would likely derive some benefit from radiation.  The problem is the studies are all on women who were treated with old chemo drugs or who had lumpectomies.  Since I had bilateral mastectomy and will do Tamoxifen, too, I feel like I have already been very aggressive with treatment and I really hate the idea of doing more.  I am afraid of the pain of skin burns and the impact this will have on my reconstruction.  I know these are small considerations when considering treatment that may prolong my life (did I mention I have a 2 yo?), but I do feel they would negatively affect my overall quality of life.  The Rad Oncs I spoke to both said that they would not twist my arm, but they felt radiation would be the best choice.  Anyone have any insights here? I would appreciate any help!

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  • DAnne01
    DAnne01 Member Posts: 31
    edited July 2011

     I just finished rads mid-June.  I too had BMX and chemo.  Rads were not that big of a deal, really.  Did 26 of 28 rads with bolus - whole breast radiation as well as axillary nodes and supraclavicle (was released early as I was told the rads did their job).  Still numb from the surgery so I don't think I felt the burns nearly as much as a lumpectomy would ... it looked pretty ugly but has since healed nicely.   For me, I wanted to do all possible so that if it did come back, I would not blame myself.  I know I was pretty tired of "treatment" after enduring the surgery and four rounds of chemo.  I wanted my life back to normal, to feel good again, and was not looking forward to radiation -- going in every day for 5.5 weeks -- but really, it was over in no time and the side effects were doable.

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited July 2011

    Nicoleb- I was in the same situation, 'grey area'.  Fought the idea of rads.  Ended up working with a RO who agreed to only radiate my axilla and supraclavical and not my chest wall - because it was my left side and I felt that based on my pathology that was the best treatment for me.  My MO agreed and supported my decision.  I also did not have ALND, so it was an unknown how many lymph nodes were actually involved, although I only had a 9% probability of additional lymph node involvement.

    Do you know how much cancer was found in your lymph node, if extracapsular extension was present, and if you had lymph-vascular invasion?  Also, was your tumor located near your chest wall?  These are some of the factors I took into consideration before I made my decision.

    Also, be sure to get the opinon of two or three ROs.  

    Feel free to PM me. 

  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011
    Thanks DAnne!  Can I ask - did you do reconstruction?  And has it affected that?  Interesting that your tumor grew to 6 cm and yet no lymph node involvement and mine was half the size, but that sneaky lobular cancer made it into my lymph node!  I totally hear you on wanting to avoid regret, should the cancer return.  I think this would have been an easier choice had I known from the outset that it (radiation) was a possibility instead of finding out 2 weeks before finishing 16 weeks of chemo.!  Regardless, I need to be a big girl now and make up my mind and then move forward.  Thanks again for your input!Smile
  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011

    Hi ProudMom,

    My node had one macromet. and several micro.  I didn't have extracapsular extension or lymph-vascular invasion, or any other high-risk scenarios, I don't think.  Except my age.  Did you feel your reconstruction was impacted?  I still have TEs in and I guess I would have to postpone my exchange until I was all healed from the rads...My plastic surgeon doesn't think there is compelling evidence for me to do the rads, but of course he is biased towards getting the best cosmetic outcome.  I have met with two RO's and they both said the same thing: recommended if I want to feel I've done everything possible.  But not terrible if I don't choose to either.Frown

  • DAnne01
    DAnne01 Member Posts: 31
    edited July 2011

    Reconstruction will be toward the end of this year, early next year.  I see the plastic surgeon on Thursday, for the first time since radiation, so she can assess the damages.  She said not to worry, she does this for a living and foresees no problem with reconstruction.  She just wants the tissue to heal fully beforehand ... me too!

  • DAnne01
    DAnne01 Member Posts: 31
    edited July 2011

    Regarding zero node status, two nodes were plucked from the sentinel node biopsy and two were found within the breast tissue during BMX - all four negative.  Apparently T3N0M0 is somewhat rare so for treatment, oncology doctors went on the assumption that there was node involvement ... but it was a Grade 1 cancer, which grows slowly so who knows?

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited July 2011

    My reconstruction was not impacted because I did not radiate my chest wall.  My RO zapped me as if I had lymphoma, aiming from the supraclavical area down to the axilla, so my implant was not affected.  If you radiate your chest it is usually recommended to be fully inflated first, let the TEs get zapped and then have the exchange after rads.

    What made me decide to do rads was the fact that I was clinically node-negative before the BMX. Nodal involvment was not detected through physical exams, ultra-sound, mammogram, MRI, or even during the surgery.  It came as a totally surprise for everyone.  My RO said because of that reason alone, having 9mm and 7mm cancer in my two lymph nodes (which was more than the IDC in my breast), and the fact that I refused the ALND, if I had a recurrance in my lymph nodes we might not detect it until after it spread.  So this was extra insurance on top of the surgery and chemo, although no guarantee.  Everything else of the pathology was good with respect to the breast, such as no LVI, not near my chest wall, etc... that is why I didn't radiate my chest.  If the amounts of cancer in those two lymph nodes had been less, I might not have done radiation, but then again I don't know.  I had to base my decision on the information I had and have no regrets, which I don't. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2011
    I had NS BMX with a positive SNB (20 cell cluster), 5 weeks later an AND with an additional positive node with a 6mm area, out of an additional 11 removed.  TCH X 6 finished in June '11 but no rads.  BS and MO both say not necessary, and I just checked with both again within the last 2 weeks.  I will continue Herceptin until 2012 and will start an AI within the next month or so.  Nicoleb the size and grade of your tumor look similar to mine.
  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited July 2011

    There was a study out of Europe that did compare Axillary Lymph Node Dissection to Radiation, here is the link, http://www.medpagetoday.com/MeetingCoverage/ESMO/22750 

    This study was for people who had lumpectomies, but thought you might find it informative.  

  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2011

    I had a BMX & had bilateral IDC also. I will be starting RADs soon. Bilateral RADS. One side I have node involvement(RADs instead of ALND) & the other lyphatic vascular issues. Originally thought BMX meant no RADs. So many of us are finding out otherwise.

       I went for my markings on Friday. Everyone was nice but those machines make it seem so impersonable. As for quality of life, I hope I'm making the right decision. Everyday for 6weeks seems forever. The amount of redness & soreness seems to very from person to person. I Plan on just plowing thru it & hoping for the best.

  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011

    Thank you ladies! I am leaning toward radiation - not because of overwhelming data, but because I want to be sure I've done everything I can do...

  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited July 2011

    Hi Nicole,

    I was struggling with the same decision for a month.  I have 5 or 6 studies on this topic, none of which are conclusive for women who don't fit into the regular categories of those who definitely need rads (i.e. large tumor, more than 4 positive nodes, didn't clear margins at surgery).  I can photocopy and send to you if interested.

    My take on these studies is that there are secondary  risks of recurrence beyond the classical categories listed above, which would be reduced by radiation even after mastectomy and ACT chemotherapy.  Some of those secondary risks seem to be a high  histological grade of the tumor (i.e. grade 3) and whether there is vascular invasion (this is in the path report).  I am choosing radiation because of being grade 3 with vasc invasion. 

    Did the rad oncologist indicate if you have any other risk factors?  If I didn't, I would have skipped radiation so as not to put my body through that.  Yes, it is painless, but I fear heart or lung issues plus lymphadema.  Those are my thoughts on this issue.

    Good luck with your decision, it's a hard one.

    Laura

  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011

    Thanks, Laura.  I think I have the same studies - I just wish they were more convincing!  I have gone around and around on this and I'm running out of time to make a decision...part of me worries that the stress of radiation, plus the potential dissatisfaction I may end up feeling about my reconstruction might negate any positive effects of the radiation!  Does that sound crazy?  I do believe in a mind-body connection, so whatever I do I want to be sure I feel at peace with it.  

    My risk factors, as I understand them, are: age <40 at dx, one involved node, and small sampling of nodes (7) overall.   

    I appreciate your input and I hope all goes well with the remainder of your treatment!

    Nicole 

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2011

    I was told that if I had more than three nodes I would need radiation.  You only have one!  Under these circumstances I would have been told that I do not need radiation. Are you BRCA+?  I am only asking this because a friend of mine who had one node and was BRCA+ regretted not having the radiation to her chest area after having a mastectomy.  She feels it may have prevented her from having the recurrence she ended up having five years later.  I hope you come to a decision soon and good luck! 

  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011

    That's what I thought!  Turns out I am in this grey area where the protocol is for the Rad Oncs to tell you to "strongly consider" radiation.  I tested negative for the BRCA mutations.  

  • sundermom
    sundermom Member Posts: 463
    edited July 2011

    Nicole - I am 37 and had a BMX in December 2010.  I did 8 rounds of DD AC/T.  I, too, was told by my MO that I was in a gray area for rads since I had less than 4 positive nodes so he sent me for a consult with the RO.  The RO had a very different take on the issue.  He felt I was a prime candidate for rads considering I had node involvement and Grade 3 histology.  I completed 28 regular treatments (which consisted of three different fields - whole breast, axilla and clavicle) and 8 boosts to the MX scar line.  Rads has been pretty easy.  A little pinkness, a little tightness and the annoying fact of having to go to the office everyday but, other than that it has been uneventful.  I had my exchange surgery prior to rads at the urging of my PS and the implant has migrated higher on my chest.  I think I will require an additional surgery to correct this problem so I'm not sure what his thought process was, but I wouldn't recommend going that route.

    Tammy

  • Nicoleb
    Nicoleb Member Posts: 10
    edited July 2011

    Tammy,

    Our situation sounds pretty similar!  Nice to hear that rads hasn't been terrible and the impact on your reconstruction sounds pretty minimal.  If I do end up doing the radiation, I will wait for exchange surgery until after. 

    Best wishes,

    Nicole

  • bdavis
    bdavis Member Posts: 6,201
    edited July 2011

    so... I had a lumpectomy in December, then chemo Jan-May and with only one micromet (very small) I have consistantly been told that if I have a BMX I did not need rads... Now that I am having a BMX next week, I am reading about a new study that says any node involvement would benefit from rads. Of course, not only am I now 9 weeks post chemo (past my window of optimal opportunity), but having surgery in just days. All of my 4 doctors (2 Bs, MO RO) all said no rads if I have MX... thoughts? Should I now be worried with the new study?? MO said chemo would have taken care of stray cancer even if it had passed thru the node... RO was pushing for rads, but thats his job... but at the end of my consult, he said maybe the MX would be better for me... and agreed if I get MX, I don't need rads, even for the nodal area... but has that thinking changed in the past month and a half??

  • happyhere
    happyhere Member Posts: 15
    edited July 2011

    I had similar situation and finished rads back in December.  I was 41 and had 6cm tumor hiding in my left side.  Miracles of miracles I was node negative and I did the bilateral mastectomy with reconstruction. I had found one small study that showed there was no extra benefit to having rads with node negative tumors larger than 5cm.  So it was a very, very difficult decision to decide to do the treatment. (I did do chemo first.)  Now that it is six months later, I am glad I decided to do it. At the end of the day my age, tumor size and the fact I would have children living at home for the next 10 years, made it a good decision.  The side effects were tough on me, but I would not change my decision.  Could I live with the decision of not doing it and then the cancer came back? If I did not have children at home, I probably would have rolled the dice and not gone forward with the rads. 

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited July 2011

    Hi everyone,

    It is interesting to read how many of us are in the "grey area"  I just completed 6 sessions of   chemo, although I still have about 6 more months of Herceptin.  I had a rt mastectomy, axillary node dissection in January and have tissue expander in.  Path report showed 2 out of 25 lymp nodes were positive.and I had 1 mm margin next to the skin.  Also one extra capsular extension in a lymph node.  So the radiation oncoloigst recommended 5 weeks radiation as an extra insurance policy.  However another radiation oncologist said I was in a grey area and that it was a  "complex difficult decision."   How do people make this decision and really figure out the   risk vs benefits.  I am concerned about lymphadema since he wants to radiate the axilla and I am already at risk due to surgical dissection.  Also concerned about heart damage because herceptin also can damage the heart valve  and my skin burns easily so not sure what radiation will do to the breast reconstruction.  The plastic surgeon plans to do the exchange after the radiation is done.  Any advice appreciated.  It is keeping me up thinking what to do , now 3:30AM

  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    My situation was so similar. I was 35 at dx 1 year ago. I was told that if I had MX, I would not need radiation, but then my RO did recommend it. I was treated at Memorial Sloan Kettering and he is the head breast RO there. Same idea: grey area, could offer some benefit, esp because of my age. However, he suggested I do chest wall radiation only. I could skip the axillary area because it was surgically treated (and radiation would increase my lymphedema risk). And skip supraclavicular area because it's extremely rare for cancer to recur there without it already being elsewhere in the body. 

    I went and got a second opinion at Cornell. The RO there also recommended it, but she said I should do all three areas.

    I went back to MSK and talked to my RO there again. He pointed me to a study that showed that chest-wall-only radiation was very effective for us "grey area" people. The study is called "Chest wall radiotherapy: middle ground for treatment of patients with one to three positive lymph nodes after mastectomy." It compared Stage 2 women with 1 to 3 nodes who got radiation vs. not. Those who got radiation had no local-regional recurrences within 10 years, compared to 11 percent of women who didn't get radiation. Also, those who got the radiation had a 95 percent 10-year disease-free survival (including local and distant recurrences) compared to 75 percent for those who didn't get radiation. It was a small study, and retrospective, but I thought it was pretty convincing.   

    I have implant reconstruction and I had my exchange after chemo, before radiation (that's how my PS does things.) I haven't noticed any visible changes to my reconstruction yet, but I'm only a month out and I've heard it can take up to a year to see the effects. (I did get the red, itchy radiation burn, but it went away very fast. I am a pale, freckly person who burns rather than tans in the sun, but they told me my skin held up really well under the rads.) I do have some tenderness in my ribs, which I assume is inflammation from the radiation.

    It's funny, over the past few days I've been regretting my rads somewhat because of the rib tenderness, and concern about long-term side effects like wrecked reconstruction and problems healing in the future. But looking at the data in that study again made me thing "Phew! I"m glad I did it it." 

    Best of luck with your decision, it's a hard one!

     

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited July 2011

    Dear Beeb and others in the "grey area" re decision to have radiation,

    Your information was helpful.  Guess I will definitely get a 2nd and perhaps 3rd opinion.  The question is that when you see a radiation oncologist for the extra opinions,  is there a bias to recommending that  radiation done?? .  Kind of like when you see a surgeon they recommend surgery generally, or you see a naturopathic MD and they recommend vitamins.  How did people eliminate the potential  bias when getting a second or third opinion. It seems it should be a team decision since there are other factors involved  like impact on reconstruction, impact on skin/surgical site, impact on potential mobility if you get lymphadema.  Who did people go to for their second or third opinions  or perhaps I am just worrying too much about this?  Help!

  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    I would think that letting the doc know they are your second opinion would take away (to some degree) the impulse to recommend it. They would know that you are there mainly to get their expertise/knowledge on the topic. I asked my onc for reccs for ROs for a second opinion and she told me clearly that some radiate everyone, and others are more sparing. I went to see one who was supposed to be sparing, and since she recommended it too, I felt more secure in getting it. The RO at MSK told me that if I asked 100 ROs, about half would recommend it, and half not. So there's not a strong leaning either way. It's up to you to choose. Argh!

  • bdavis
    bdavis Member Posts: 6,201
    edited July 2011

    I have been stewing all weekend over the issue of radiation after MX, as I am leaving tomorrow to get my MX... Just spoke with my MO and he said that in Eurpoe, the belief is to radiate if there were ANY positive nodes... And the US is different... He said that with one micromet, it does not warrant radiation... he said I am halfway between negative and positive... so not a full fledged positive node... and he would still feel this way if I had one or even two positive nodes... and three or more would get radiation.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011
    Hi Nicole,

    I'm just a little older than you, 45, with Stage 2A but similar in all other DX. I opted for 4 rounds TC, finished 6/29, will have rad simulation tomorrow and start early August. I did have a + margin so RO recommended rads to chest wall, and with 1 node +, rads to local areas.

    I was on the fence, worried about all the bad things but like you said, I want to do everything I can, so I will go with what my RO says. I did have 2nd opinion, and heard the same thing.

    Here's the latest study, my RO was actually at this conference and we discussed at my last appoint.

    http://www.medscape.com/viewarticle/743992

    good luck whatever you decide...

  • dizzyakira
    dizzyakira Member Posts: 56
    edited July 2011

    Hi, I'm so glad you asked this question! I just came back from my RO consult and was told that I'm in the grey area also. I had BMX, one positive node, 4mm, poorly differentiated cells with lymph vascular invasion. I'm 32 years old and just finished chemo AC x4, Tx4. Ugh, I really don't want to do RADS but also don't want any regrets :(

    Beep, I'm also getting treated at Sloan and your post is extremely helpful, thank you :)

    I'm off to read the studies :) thanks everyone and OP.





    Kim

  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    Welcome to the grey area! These walls could use some paint.

    I've seen women go both way on the radiation issue. I also just wanted to be finished with treatment after surgeries and chemo.

    If you do it, it goes fast. Two things helped me get through it:

    1) I looked at the walk from the subway to the hospital as a way to start rebuilding my stamina and getting a little exercise every day.

    2) I treated myself to a little something every day as a reward for doing radiation -- an ice cream cone, a pair of earrings, tea and a lemon tart from Pain Quotidian. That got me out the door when I wasn't feeling like going!  

  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2011

    I think there are ROs out there that may not have become believers in Rads following mastectomies. So if you keep looking you might find one. They may feel they have been doing things one way & their professional experiences don't see a need to change.

    The positive node vs micromet question.....probably be harder to find a RO to agree to treating someone with micromets & MX with RADs. Currently micromets are grouped with node negative. Although this is not reassuring to those who have them.

    I only went to one RO. I figured I'd just get similar %'s & would be told to weigh the pros & cons. Just like MOs. Yep, another delimma, another decision. In my situation I think it's justiified, Positive nodes on the left(3mm), vascular/lymphatic on the right.

  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited July 2011

    Beeb & Kim- I'm at Sloan too.  I think their philosophy is to recommend treatment if there is any gray area.  I am going to look at that article; my RO in the Sleepy Hollow branch agreed not to radiate the axilla to reduce risk of lymphadema and since most reoccurences to women like me (2 sentinel nodes positive, one was micromet) are in the chest wall or supraclavicular area.  I am relieved at that, as  I survived surgery and chemo with no lymphadema.  But I did not know about the study that indicates that supraclav. area radiation may be unnecessary!  I will try to google the study or ask him about it.  Today was the "dry run" and tomorrow is radiation #1 for me.

    Laura

  • jashauer
    jashauer Member Posts: 3
    edited July 2011

    How is reconstruction going nicole?  I find your topic very helpful.  I am in the same boat - did ACx4 & Tx4, completed BMX, had 2/7 lymph node involvement.  However, I am triplet negative.  Doc never said a word that I may need radiation after chemo & BMX if I had 3 or less lymph nodes involved.  When I went back post op, she suggested more chemo (b/c the tumor did not shrink in half) & rads.  The surgeon took out my port during surgery so if I opt. to do the chemo & the rad, I will be using my veins.  I plan to do additional chemo as a preventative measure, but am having a hard time swallowing rads.  I, too, started reconstruction with TE & was told I would never be happy with the end result if I do rads.  I have all the all clear right now & am cancer free.  Who knew decisions would be so tough.  Of my 4 docs, they all have different opinions.  Afraid to go for a 2nd opinion on rads as it may add even more confusion.

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