Is radiation necessary after chemo and bi-lateral Mastectomy?

andigall
andigall Member Posts: 4
I am very new to this site.    My question is radiation really necessary with only 2 lymph nodes involved? 

I am 43. I had Invasive and in-situ lobular carcinomaI  on my right side.  I chose to have a bi-lateral mastectomy in May. After surgery I was told that my centinal node was clear, only to be told a week later that there was some cancer found and I would have to have more nodes removed.  After the 2nd node disection 1 out of 10 nodes removed tested positive.  So off I went to chemotherapy.   I just finished chemo - (ACT - and in the trial study for Avastin) in December and then had my second reconstructive surgery to replace the temp implants.  My oncologist then suggested I "talk" with a radiation oncologist to hear what she recommended.  Of course, much to my dismay she said that based on meta-analysis of many trials - the "newer" thought process is to give radiation to those with lymph node involvement under 3 nodes.  Because I had 2 (out of 11) - she would recommend radiation of the chest wall.  I was under the impression going into this whole process that under 3 positive nodes  (and a mastectomy) would not need radiation.  Have others been recommended radiation in this instance and declined?  My gut is saying its just overkill and that the statisticts may not necessary apply to my situation.  Would love feedback.

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2010

    andigall ~  I don't think it's as clear cut as if you have a mast and "x" # of positive nodes you do/do not need radiation.  A lot has to do with where your lesion(s) were located -- i.e. how close to the chest wall -- as well as other factors about your individual pathology.  But the rad onc you saw sounds like she's on the cutting edge of what's happening, which is what I learned when I was in a similar situation to yours and ended up doing rads.  The newest research, mostly from Europe, clearly does show increased survival for those who have rads after a mastectomy.  (I will try to find some of that research and post links.)

    The other thing I would take into consideration is that you have ILC, which, as you may know, does tend to be a bit "trickier" than IDC, or so our doctors often tell us.

    I ended up talking to 3 different rad oncs before I got comfortable with the realization that I was possibly taking a gamble (based on my pathology, which included a close, unspecified margin and a node with extracapsular extension ) if I didn't do rads.  You may want to talk to another rad onc for a 2nd opinion, especially to find out if there is anything specific in your pathology that indicates RT would be a wise choice.    Deanna

  • hrf
    hrf Member Posts: 3,225
    edited February 2010

    My rad onc also told me that current research says best to do rads when there are even just a few lymph nodes involved. While I wasn't happy about it, rads are still easier than chemo or surgery and at least I felt that I did everything possible.

  • andigall
    andigall Member Posts: 4
    edited March 2010

    Thanks so much for the great feedback and articles.  I really appreciate it, sometimes it is so hard to find good info on the internet!  I still am not convinced that, after a double mastectomy AND chemo,  the radiation would help.  A lot of those studies/articles don't talk about also having had the chemo...

  • sweetnvmbr00
    sweetnvmbr00 Member Posts: 13
    edited March 2010

    I too fell  into the "gray" area for rads but the rads onc that I meet with took all if my specifics into account and we made the decision based on that. My tumor showed to have Extrnodule Exstention  ( cancer cells outside the tumor wall) as well and that was the weighing factor in my case. I figured if I could do chemo I could handle rads. 

  • andigall
    andigall Member Posts: 4
    edited March 2010

    Thanks Cathy.

    I came to this board for that reason.  I feel like there isn't a radiation oncologists  that would NOT recommend radiation for someone in the gray area.  That is their job!  So I wanted to hear what others had done.

  • BarbR
    BarbR Member Posts: 13
    edited March 2010

    My oncs convinced me right off the bat. Nothing was showing up in my nodes but my tumor was huge 5,5cm. And it didn't show up in mammography, even after I felt it.I had DCIS in 2002 so I as being watched, too,

    They described this type of cancer as sneaky and creepy, crawly. It was enough to scare the wits out of me so I went through the rads after a double mast, AC/Taxol.

    Got my tissue exchange Monday. It's been a long year but I am almost done. Hang in there, you'll be done, too ;o)

  • YoYo44
    YoYo44 Member Posts: 203
    edited March 2010

    Thanks for the articles DLB823. 

    I fall into a higher risk category and will be having radiation after a BMX (10 cm ILC tumour bed, small margin and  6/8 nodes pos) but the references you posted are reassuring and concurrent with what the rad onc told me.  I will ask him about the second level node radiation though after reading the articles.

    I just finished chemo (FECx4) last Thursday and expect to start rads 4-6 weeks from now.  It's been a long haul but is doable.  Next up will be Tamoxifen (on top of Zoladex) plus Zometa.  Hard to believe all I ever took before was Ibuprofen....

     Have a great weekend ladies!

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2010

    YoYo ~ Glad those articles were helpful, and congratulations on being finished with chemo!  YaY!!!  Hopefully, the worst is behind you now; at least, chemo was the worst part of this journey for me.  Rads, by comparison, was a piece of cake. 

    It's interesting that your tumor was Grade 1 (least aggressive), and yet it was not only quite large, but you had those positive nodes.  I know ILC can hide and elude detection for years (I also had ILC), but your situation is an interesting example in how unique each of our bcs can be.     Deanna

  • YoYo44
    YoYo44 Member Posts: 203
    edited March 2010

    Hi Deanna,

    I have not upgrded my DX, not sure if I will (denial still?). 

    After the surgery the pathology report came back with grade 2, it was hetereogeneous grade 1/2 initially and I guess the neo-adjuvant Taxol wiped out the grade 1 stuff mostly and left behind the 2 (my onc said that was good as it made the tumour more sensitive to chemo-always a silver lining...).

    I read an interesting article on grading of ILC and there are issues.  For instance the whole lack of tubule formation tends to push ILC up to grade 2 (hope I did not get that garbled).  So the very different nature of ILC makes staging challenging.  Even the 10 cm tumour bed was a probem.  It was not very dense with tumour cells but the fact it had grown so extensively and then migrated to 6 nodes, well, darn sneaky ILC.  It was a shock.  Onc won't guess how long it has been there so it is possible it was only a few years or much longer, as you know.

    The journey continues!  Have a great day everyone!

    Yo

  • Kiki1965
    Kiki1965 Member Posts: 11
    edited April 2010

    My radonc gave me a 'probably not' recommendation for radiation.  Here's the thing.  You have to look at your specific situation and the context of the 2 studies that showed benefit for fewer than 3 nodes.

     In my case - 2 of 25 nodes, no lymph/angio involvement, grade 1, pre-menopausal, er/pr +, hr2 -.

     The Danish study - showed some survivor benefit for pre-meno women with 3 or fewer nodes. However, the average number of nodes removed was 7!  So some women were maybe 2/2 positive, maybe 3 of 7 positive.  So - one might surmise that there was disease in other nodes that was never detected hence the survivor benefit.  The other study was Canadian - it was smaller, average nodes removed was 11.   

    So in my case - the possible benefit is not so clear.  I had clear margins, good testing of nodes (of course it doesn't include the nodes up by my neck, sternum), but there was no visible reason to be suspicious.  After chemo & with Tamoxifan - the benefit to radiation might not be worth the short/long term risks.

    Apparently, I am a little unusual having grade 1, pre-menopausal and some of the other 'good' indicators, but none the less, I want to point out that in some particular situations a rad onc might NOT recommend rads. 

  • JennyB100104
    JennyB100104 Member Posts: 237
    edited April 2010

    Interesting. I'm premenopausal too, and I had 0 node involvement. All three of the oncologists I've gone to have recommended radiation pretty strongly. Maybe it's because my margins all around were not clear after the first surgery? I had to go in for a re-excision. Hmmm. Of course, radiation scares me. But then, so does everything else about this situation.

    Edited to add: I didn't have bilateral mastectomy, only a lumpectomy & a partial mastectomy on the affected side. And I will be having chemo (TCx4).

  • Mouse6
    Mouse6 Member Posts: 246
    edited April 2010

    When my tumour was biopsied, I had an enlarged node that was biopsied as well. Both came back positive, so I knew I needed chemo. We did chemo first because they were hoping to shrink & do lumpectomy. Then we discovered another tumour in same breast, so will have mx now. My point is, even though I will have chemo and mx, my surgeon and rad onc both agree without a doubt, I need radiation. The surgeon said the concern is mostly the chest wall, because after mx, if a recurrence happens, this is the most likely place it will occur. 

  • karen1956
    karen1956 Member Posts: 6,503
    edited April 2010

    Andigall...I had bilat (one side prophy), chemo and rads.  At the time of Dx, I knew there was lymph node involvement....my medical onc told me that if 4+ nodes were  positive then rads....well I had 8/12 positive so rads it was....

  • Kleenex
    Kleenex Member Posts: 764
    edited April 2010

    I was premenopausal, grade 1, but even if I had chosen mastectomy over lumpectomy,  I would've ended up with radiation due to the location of my tumor. Tucked in between the fat layer under my skin and chest muscle way up on the left side, there was no way to get good margins no matter what type of surgery was done.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2010

    Andi - I went to two rad oncs as I too had a bmx and one positive node.  I went through 6*TAC chemo.  I'm different in that I had IDC, but I think my experience is relevant as you make your decsion.  One rad onc said absolutely no doubt you must do rads.  I had pulled some published studies questioning the benefits of rads for women in my situation, but he blew me off - his attitude was he was the doctor and obviously I didn't know what I was talking about.  I went to a second rad onc who was wonderful, and thoroughly reviewed my case, even go so far as to call the pathologist with detailed questions about the pathology report.  In the end, she said that rads gave me no survival benefit, and only about a 10% benefit of reduced loco-regional recurrance.  That meant that for 90% of women in my situation who undergo rads, it does them no good whatsoever.  She said she'd be comfortable if I wanted to go with rads, but also comfortable if I declined them.

    She gave me great advice - she said take a "rad decision" vacation for a few weeks and stop thinking about it.  Pick a day a few weeks out, and tell yourself you'll make a decision on that day and not before.  Make your decision, then revisit it a week later.  If your gut still tells you that you made the right decision, then go with it.  My decision was to decline rads, and two years out I'm still very comfortable with that decision.  But it's very personal - someone in my exact same situation might opt for rads, and that would be the right decision for them.

    Good luck!  

  • kjlotus
    kjlotus Member Posts: 7
    edited April 2010

    Hi Andigail,

    Have you gotten a second opinion from another radiation oncologist?  I would suggest doing that. My radiation oncologist told me that there's a point at which research has shown positive results for radiation after masectomy and chemo  - which is dependent on tumor size (5 cm or larger) 4 or more positive nodes, and something about the tumor margins (i think when the margins aren't clean)...with the nodes and the margins more critical than the tumor size. I'm a little surprised that they are recommending radiation for you given your diagnosis, but of course - the doctors are experts in their fields...hmmmm - it's good your checking your options!

  • truth1363
    truth1363 Member Posts: 1
    edited June 2010

    Thanks to all you gals for contributing to this forum...information I need. I'm 2 weeks post right mastectomy with all 3 sentinel nodes negative. My tumor was 1 centimeter and grade 1-2. But, it was located at 6 o'clock very low on my breast and right up against my chest wall - margins not clear. The surgeon took a large divot of chest muscle below this area during my mastectomy. While the marins of the muscle tissue were all clear (and no cancer found in breast tissue or lymph nodes) there were cancer cells in two small ducts in the center of the muscle tissue. So, I'm about to embark on chemo, but baffled my any need to do radiation. The surgeon and oncologist expect the radiation oncologist to recommend radiation, but oncologist says cancer is slow growing type and margins of tissue were clear. Like the rest of you, I'm loathe to do radiation unless absolutely necessary. I see that it is not as straightforward a decision as one might hope. Your positive attitudes help lift me. Thanks!

  • Tashfeen
    Tashfeen Member Posts: 2
    edited February 2011

    Hi Ladies, first i would like to wish you all a very healthy and a beautiful life. You are all brave people and so is my wife, who was diagnosed with breast cancer in June, 2010. I hope you will not mind my coming on to your forum but I need guidance in my wife's case. I hope some one will be of help.

    The details are:

    The lump size detected during mammograph was 4.0 x.4.1 x.4.6  cm at 4 o- clock position in the right breast.

    We were asked to do further tests including biopsy ( true cut was suggested but the hardness of the lump did not allow that so only FNA was done), CT Scan and Bone Scan. FNA was inconclusive and both CT Scan and Bone scans were clear.

    The surgeon suggested that we need to  do a frozen section i.e do a biopsy at the time of surgery, if the tumor is found to be malignant, they will do a mastectomy otherwise they will do lumpectomy.

    After due deliberations and opinions we went ahead for the surgery and the doctor called me and my son and told us that the tumor is malignant and he has to do a mastectomy. We were a little unsure but did the doctors bidding and the mastectomy was performed. well and good.

    Chemotherapy was to be started after the wound healed and that took about 3 and 1/2 weeks to heal. The pathology reports when they came in said that it was a IDC cancer tumor but all lymph nodes were unaffected, no invasion into the skeleton or the lungs or anywhere else, as we had seen in the CT Scan and the bone scans also, the tumor was removed with clear margins with any tumor affect.

    The oncologist and the surgeon my wife was being treated by had to leave the hospital for some reason and we moved to another hospital, 6 chemotherapy sessions have been completed but now the Doctor is suggesting Radiation.

    We are worried and concerned. Keeping in view that there was no invasion, nothing in the lymp nodes, is radiation required. They diagnose the tumor as Grade 3, just because of the size of the tumor and for no other reason.

    What should we do? Go for radiation for 6 weeks or not? I will appreciate as much input we can have on this matter.

    Thanks and best wishes.

  • CarylC
    CarylC Member Posts: 230
    edited March 2011

    Hoping someone might have a take on this.  I met with an oncology team at the University of Chicago last week after my bi-mx on March 10th.  They recommended chemo (THC 6x) Herceptin 52 weeks, then rads.  Today when I went to get my port put in, my BS asked if I had met with the oncologists and I told her yes, and what they said and she was very surprised about the rads.  She said that usually radiation was not recommended in my situation.  Now I'm wondering if this is overkill?  The chemo will be administered by a local oncologist, not done at the U of C, these doctors were recommended by a doctor there who is a personal friend.  

  • TinaJoy
    TinaJoy Member Posts: 1
    edited June 2012

    I only had a lymphectomy, but I asked why I needed radiation after chemo and my oncologist said that the chemo gets to my body through the blood. Whereever there is surgery, the blood flow is disrupted, so the radiation is needed to target those areas. This may be why they are recommending radiation to you.

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    From what I've read and been told it is rads for everyone except the Stage 0s

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