Radiation w/masectomy and 1 pos node did you have it

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ccjj
ccjj Member Posts: 128
edited June 2014 in Radiation Therapy - Before, During, and After

Clinically dx with ILC 2cm no node involvement.  Since ILC decided to have bmx with TE /recon and planned to avoid radiation.  However, after surgery 1 of 9 nodes pos.  Also, my anterior (closest to the skin) margin was clean but small, < 1 mm.  My surgeon says still no radiation needed. That the chemo and Herceptin will take care of any stray cells. Plan to get a couple of different opinions from radiology oncologists but feel like they will recommend it because thats what they do.  Anyone else encounter this situation and what did you decide? Thank you for your input and taking the time to share. 

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2011

    I had one positive node and declined rads.  I had consultations with two separate rad oncs - one strongly recommended it, and one told me I was on the borderline, gave me the pros and cons, and said she'd be comfortable with whatever decision I made.  On the positive side, I had clear margins - my closest margin was 6mm.  My tumors were also in the upper outer quadrant.  I also had 6*TAC, very aggressive chemo.  On the negative side, my tumor was grade 3 and multifocal.

    The second rad onc broke it down for me like this: She said that of every 100 women like me, 90 are radiated for no reason.  85% will never recur whether or not the get rads.  5% will recur whether or not they get rads.  She said approximately 10% of women with cases like mine will avoid recurrance if they get rads.  BUT, she also said that there was no survival benefit to me at all - even the women who recur do not die at a greater rate than the women who do not recur. 

    Once survival was off the table, then it became a quality of life issue for me.  Were the potential s/e from rads worse than taking that 10% chance of recurrance?  Everyone answers that differently.  For me, I declined rads and am comfortable with my decision.  However another women with my exact same pathology might go ahead with rads, and that would be the right decision for her.

    My advice - get a second and even third opinion.  Research, research, research.  Ask questions.  Ask for percentages.  Ask about recurrence rates and survival rates with or without rads.  Ask them to justify their recommendation, one way or another.  Once you have all your info, let it sit - don't think about it for a few weeks.  Then, make your decision.  One week later, revisit that decision.  If it still feels right, then you have your decision.  Then don't look back.  Once the decision is made, it's made.

    The rads decision was the most agonizing decision for me, but once my decision was made, it was made, and I haven't looked back since.  Good luck!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2011

    ccjj, I had a really similar situation -- 1 positive node (it had been declared clear in the OR, but path found it was positive with extracapsular extension), and an "unspecified" 1mm margin on a tiny piece of trimmed tissue that hadn't been inked (my BS took it at the last moment just to smooth an area for my PS), and a tiny 1mm ILC lesion that hadn't shown up on MRI turned up in it.  (One more reason I am sooooo keen on NCI-designated cancer centers, b'cuz I feel my BSs experience and instinct to trim that bit of tissue was HUGE!)  

    Anyway, I was so against RT, I consulted with 2 different rad oncs and even made one of them get a 3rd opinion from a renown expert at his institution.  They all thought RT would benefit me for the two reasons outlined above, although my local onc didn't think it was necessary.  His rationale was that if I had a local recurrence, we could deal with it.  But his just thinking there was a possibility that could happen didn't give me peace of mind, nor did I want to go through any of what I'd just been through again. 

    My final decision, after finding a local rad onc I really liked who was able to calm a lot of my specific concerns (i.e. lymphedema and heart & lung damage) was to go ahead and do rads. And I'm very glad I did.  I feel I had a couple of oddities about my path that just made it the prudent thing to do, and I don't regret my decision for one moment.  But I think it's a decision we each have to make based on those individual path issues, and not be persuaded too much by what anyone else with similar stats may have done, although it's good to hear why they made their decision.     Deanna   

      

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

    I did RADS for 2 positive nodes in the left side & lymphatic vascular invasion on the right. So I had RADS on both sides. I have IDC & you have ILC, not sure how that pertains to nodal involvement.

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited September 2011

    i had rads after mast on right side - both med onc and rad onc recommended due in part to the very large size (lumpectomy took out 5x7x12 cm and i had no margins in any direction) and that my ilc was multi-focal and one positive node but i agree with the above comments that getting 2nd or 3rd opinions can be valuable in making your decision if you are truly undecided and for your peace of mind - it is especially helpful if you are undecided to request your onc break it down in to risk/benefit in addition to a general "i recommend" - my sister had decided against rads from the get go but was still relieved when the rad onc recommended against it (stage 2, small idc, 1 node, dble mast, recon) 

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  • ccjj
    ccjj Member Posts: 128
    edited September 2011

    Thank you all for your replies. It really helped.  You all make great points as to how you came to your decisions. I am at a NCI designated cancer facility, and have decided since I am in the midwest to get a 2nd opinion from Mayo clinic in MN.  Its all set for next wed. I havent even seen the radiologist here yet, but want to get 2 opinions and then make my decision.  This cancer deal is one horrible decision to make after another.  First it was the lumpectomy versus masec. Then masectomy versus double masect. Then I obsesed about which chemo treatment I should be on. Now its the radiation deal.  I start chemo this Friday  AC x 4 dd and then dd T x4 followed by Herceptin and then tamox. And to think before this I only took a multivitamin. I have read that a lot of people do taxol weekly over 12 weeks and that its more effective. I plan to ask Mayo about that as well. Not that I want to spread it out any longer.  Also confused on how onco choose between taxol and taxotere.  Congrats Jenni_ca on your 7 years out!  That is so encouraging to hear. 

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