Post-Mastectomy Radiation

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fhny2012
fhny2012 Member Posts: 41
edited June 2014 in Triple-Negative Breast Cancer

Hi,  I'm new to this forum and was hoping for some advice and guidance!

I'm 31 yrs old, and was diagnosed with triple negative in April.  Had a bilateral MX with TEs put in, now doing chemo (4 round A/C, 4 rounds Taxol), and have had one recommendation from MSKCC (where I am being treated) NOT to do radiation, and one recommendation from Dana-Farber (where I just went for a 2nd opinion) to definitely do radiation.  I'm not sure what to do...

My largest tumor was 2.8 cm, with two smaller sites, all in the right breast.  I had a micromet in my sentinel lymph node (though they took out 19 other nodes just to be safe).  I did have LVI.  MSKCC is saying that the micromet is not enough to merit chemo, and they do not view LVI as a factor.  Dana-Farber is saying that even without the micromet, they would be recommending rads b/c of my age, b/c the cancer is TN, and b/c I had LVI.

My instinct is to do the rads - I want to be able to enjoy a long life with my wonderful husband and I really hope to have children, so I want to throw everything I can at this now.  I'm terrified of having a local reoccurence and having to go through chemo again.  That being said, MSKCC does implant placement BEFORE rads, and I know that it will really affect my cosmetic outcome and greatly increase my chances of capsular contracture (my PS has said I'm too thin to have anything other implants in terms of reconstruction).  I'm not vain enough to let a wonky implant stop me from potentially saving my own life...but I am scared of rads and upset that this is such a gray zone.

I would GREATLY appreciate any guidance from any other ladies (TN or otherwise) out there!  Thank you.

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  • youngmommy
    youngmommy Member Posts: 10
    edited August 2012

    Hello fhny2012,

    My wife (30 yrs old) was diagnosed with TNBC in Nov 2011 and she just finished her radiation treatments. She had 4.2 cm tumor and had neo adjuvant chemotherapy (chemo before surgery) Dose Dense 4 AC followed by 12 weekly Taxols. She then had BMX (our choice) and had a complete response. She was node negative from SLNB before chemo and we faced similar situation as yours. But after discussing with many oncologists, we decided to err on the side of radiation. Given her neg node status and no LVI, RO was kind of on the fence whether to do radiation. But reviweing many articles on pubmed etc, we decided to do it -- just for an mental peace. It was not an easy decision and my wife did get burns towards the end of treatments, but now that it is done, we are at peace that we have done everything we could have.

    Here are a few studies which you should read (not to neccasarily influence your decision with radiation but good readings you should discuss with your Medical and Radiation oncologist:
    http://jco.ascopubs.org/content/29/21/2852.short
    http://www.sciencedirect.com/science/article/pii/S0360301612001496
    http://archsurg.jamanetwork.com/article.aspx?articleid=407488

    Please understand that mental peace if above everything. If you can find peace with making up your mind to not do radiation, then you should be fine. But if you have slight bit of doubt, then you should carefully go over all the pros and cons of doing radiation Vs not doing it, with your medical team and then make a informed decision.

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  • christina1961
    christina1961 Member Posts: 736
    edited August 2012

    Hi fhny2012,

    I'm sorry you have to be making this type of decision and dealing with cancer, particularly at your age.  I am 51.  I had neoadjuvant chemo and less than a complete response to the chemo as there was remaining 2 cm tumor and 2 positive nodes (9 mm the larger) following surgery.    I had a unilateral mastectomy with excellent margins (2 cm) and 16 nodes removed.  I decided to opt for radiation.  My radiation oncologist said an argument could be made either way.  Reading the MA 126 study helped me with my decision.

    I haven't had reconstruction yet and rads has certainly provided challenges for reconstruction.  Lat flap was discussed but I don't want to lose/move my lat muscle.  My PS believes he can go the tissue expander route but my surgeon was opposed as he felt I would have a high chance of additional complications.  I am presently waiting to go for a consult in Atlanta at Emory but the PS there will not see anyone until at least one year following rads. I may decide not to reconstruct, just not sure.  Good luck with your decision.

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  • fhny2012
    fhny2012 Member Posts: 41
    edited August 2012

    Thank you both for the responses!  I think I am erring on the side of radiation as well...I am really focused on the "sleep at night" aspect of this, and I think that radiation would help me feel like I did all I could.  Christina1961, would you mind posting a link to the MA 126 study?  And youngmommy, those studies were very helpful, thank you!

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  • christina1961
    christina1961 Member Posts: 736
    edited August 2012

    I may have the study name wrong but I do believe the MA 126 study is also relevant but I cannot find it.  I'll have to do more digging this weekend - if I forget to post, please PM me Monday as I am truly scatterbrained right now with work and other distractions.

    Here is a study that is definitely on point, and it is also one that I read - I believe I had access at the time to the full article but no longer have access.  

    This is the abstract:

     http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=35398              

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  • Be_Positive
    Be_Positive Member Posts: 31
    edited August 2012

    Hi fhny2012,

    I know that you stated that you were most likely going to do radiation, but I just thought I'd let you know my journey and decision since I have decided against radiation.

    I was diagnosed in Dec 2011 at the age of 33. My tumor was 3.5 cm and a had a "palpable" node which means that suspected that it contained cancer.  My node was not biopsied.  I had 4 rounds of FEC and then 4 rounds of Taxotere. I had a bi-lateral mastectomy on July 3rd with placement of tissue expanders.  Pathology report showed no cancer in the 11 nodes that were removed and my tumor shrank to 0.5 cm.  Surgical margins were very large.

    It was strongly recommended that I do radiation because of my age and the fact that my cancer was TN.  I read study after study on the internet, read what other women had to say about the side effects of radiation and then ultimately listened to my gut feeling which was NOT to have radiation.  I am at peace with my choice even if my cancer returns.

    Radiation, chemo and even surgery are all a very personal choice.  Each women needs to decide what works best for her.  I wish you well with your final decision.

    Andrea

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  • jenn333
    jenn333 Member Posts: 178
    edited August 2012

    fhny, I am not TN but I had a UMX with radiation.  The reasons for radiation in my case were I was multi-focal (5 tumors, largest of which was 2.1cm, smallest about 1cm), close margins (needed reexcission), and LVI.  I didn't have chemo (low Oncotype score) and I think I was probably being aggressive in having radiation but I don't regret it.

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  • fhny2012
    fhny2012 Member Posts: 41
    edited September 2012

    Thank you all so much for your responses.  After much soul-searching, I've decided to do the rads.  I'm scared, but I just feel like I have to do everything to beat this now, and I suspect that I will sleep better at night feeling like I've done everything I could.  While that is the right choice for me, I know others have chosen not to do rads and completely respect their decision.  There is no right answer in all of this, I am just trying to do whatever will allow me to live with less fear moving forward.

    Again, thanks so much for all the input -- so helpful!

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  • curveball
    curveball Member Posts: 3,040
    edited September 2012

    @fhny2012, I'm not triple negative and don't have anything to say about radiation, but I do suggest you seek a second opinion about your reconstruction options, from a doctor with experience in microsurgical breast reconstruction. The first PS I consulted told me I was too thin for anything but implants, but my second opinion doctor said I am a candidate for DIEP. You may be able to avoid the high complication risk when implant reconstructions follow radiation therapy.

    Best wishes for a successful treatment.

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  • netty46
    netty46 Member Posts: 296
    edited September 2012

    My diep flap all turned into hard necrosis because of radiation.

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  • fhny2012
    fhny2012 Member Posts: 41
    edited November 2012

    bump...I am still struggling with the rads / no rads decision, and would love any addition input!

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  • minxie
    minxie Member Posts: 484
    edited November 2012

    My opinion - do the rads. This, from someone who had a BMX, no rads, and then had a local recurrence 3.5 years later.

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  • fhny2012
    fhny2012 Member Posts: 41
    edited November 2012

    Minxie - I'm so sorry for your recurrence.  I hope you are getting through treatment.  I really appreciate you sharing your perspective.

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  • rozem
    rozem Member Posts: 1,375
    edited November 2012

    fhny i was given the exact same reasoning as your DF second opinion - LVI, aggressive pathology (her2 for me),  and young age at diagnosis - and my nodes were clear before starting neo adjuvant (on imaging).  I really wrestled with this decision aswell and ultimately decided to do rads.  I was told whether i had a lump or msx i would need rads due to the above.  I know there is much discusson on whether a micro-met is considered a positive node but it does tell you that they cancer did migrate out of the breast so my opinion is that it is a positive node (this is just my opinion).  Maybe a third (tie-breaking) opinion would help you?

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  • fhny2012
    fhny2012 Member Posts: 41
    edited November 2012

    Hi Rozem,

    I've decided to do radiation as well - I'm just so scared re: the micromet, LVI, etc.  I think I'll be able to have a higher quality of life (regardless of what happens) if I know that I did everything I could.  Fingers crossed...

    How was your rads experience?  Did you choose to have reconstruction?

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  • rozem
    rozem Member Posts: 1,375
    edited November 2012

    honestly, rads was a breeze compared to chemo ( i was so sick, I lost 12pounds in 2 mons!).  I barely got red and felt pretty good through the entire process, i did feel really really tired near the end but i would just crash in the afternoons for a couple of hours and be fine.  Some ppl feel nausea but i didn't and i had the worst nausea during chemo. 

    I just had a bmsx with TE's about 5 wks ago , due to the rads I had to have the LD flap done on the radiated side.  Please keep in mind that here in Canada they won't do TE's if you have had rads without the flap surgery but i know that many, many women still have te's/implants with rads and no additional flap surgeries in the US.  Yes your rads side may be comprimised but chances are good that it won't.  My rads side is fine, PS says im healing beautifully. 

    good luck with everything!

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  • fhny2012
    fhny2012 Member Posts: 41
    edited November 2012

    rozem, that is great to hear!  I've been so scared/nervous that every story of someone having a relatively easy time of rads makes me feel a lot better.  I am going to cross my fingers and hope for the best!  Glad you are healing so well and feeling good.

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