I'm in the Gray Zone for Radiaton Therapy - anyone else?

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  • sharkey
    sharkey Member Posts: 18
    edited October 2009

    That reminds me of my chemo nurse "fessing up" that the low blood counts were definitely the chemo.  But some of my other troubles, like nausea during the Taxol, well...people don't usually have that trouble...

    There do seem to be good results with many women having rads and reconstruction, so I am taking heart.

    This site is a terrific resource!  There is so much hope and support as well as good advice.

    I am hoping to hear from ladies whose radiation oncologists advised against radiation.  I'd like to get a second opinion from someone who takes a less aggresive approach to get both viewpoints on the subject.

  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited October 2009

    I had a Bil MX in June, just finished chemo Sept 30th, my exchange scheduled for Nov 12th and an initial consult with the Rad Onc on Nov 2nd...I so want to be done with all this...

    I have been told by my onc if it were not for the Her2+++ I would have been able to avoid chemo, but in order to get Herception, I had to to do chemo.   I am only 10-20% ER + but all research I have done and based on onc's recommendation I will be starting Tamoxifen as well. 

    I had one small margin, near the skin just below the nipple that was very 'thin' .5mm, everything else was 1 mm to 3 cm clear  - I no longer have that nipple or any nipples for that matter but I am still meeting with the Rads onc because I do not want to look back and say 'I should have at least asked about Rads". 

    I am really struggling with the pure thought of rad's - both for the possible SE's and cosmetically.  Am I being vain?? I am 38 and I really just want to move on with life the best I can.   I tolerated surgery and chemo well, am in chemical menopause and most likely will stay there with the Tamoxifen... I will never be the 'same' person I was before my dx but I really want a quality of life as well...

    Has anyone had rads AFTER exchange?

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    I met with my RO today and I will be doing the rads.  He said he's known people to do the exchange before rads however it's not the norm.  (He said he'd explain why and he never did).  But I'm going to go ahead and start the rads in a few weeks and hold off on the exchange.  I will know that I gave this all I had and that's really all I can do!

  • nanabolini
    nanabolini Member Posts: 61
    edited October 2009

    To sharon 51: You say the rads hit your esophogus, can you tell me please how you knew this and what was the outcome? I am having a problem with swallowing since rads and am concerned.

  • svz
    svz Member Posts: 7
    edited November 2009

    I, too, have been told by 2 Radiation Oncologists that I could go either way regarding radiation. The reasons to do it are:  1. age (I'm 38) 2. I had 4 tumors 3. one very close but "clear" margin - 1 mm, 4. I had lymphatic invastion.  The reasons not to do it are 1. Technically clear margins, 2. small tumors all less than 2cm, 3. no positive lymph nodes. 

    Has anyone been in a similar situation and what was being recommended to you?

    Also, I have TE and no one has mentioned any issues with Rads with TEs.  My PS even said he will not do exchange until after rads due to possible CC caused by Rads.  One RO did say that to get the proper angle, I would need to deflate my other side since my chest wall sinks down in the middle.  Has anyone ever heard of that nessessity???

    Thanks for your help!  I can't decide what to do.

  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited November 2009

    SVZ - I am in a similar situation except I had no lymphatic invasion. When I was first planning my tx options my BS and Onc kept saying I was in the "grey" for rads but the way they said it led me to believe rads really weren't in my future.  Because of my HER2 + status I had 4 rounds of T/C chemo + Herceptin (Herceptin to continue until Aug 2010).   I met with the RO because I wanted to make sure I had all my options and Rads were recommended.  After careful consideration and lots of praying I have decided not to do radiation, but that is what is right for me.  

    Most PS do not like to do exchanges until after rads because of the risk of CC...I haven't heard of having to deflate a TE for Rads but maybe someone else will come along with more info.

    Wishing you peace in what your decision is.

  • Lissa123
    Lissa123 Member Posts: 10
    edited November 2011

    Hello,

    did you end up doing radiation?  i am debating whether to finish them or not  i have had six but i don't feel like continuing them.  did you have an implant after radiation? did you have any problems.

     regards

    lissa

  • ccjj
    ccjj Member Posts: 128
    edited November 2011

    I am also in the grey zone.  I have had one opinion from a RO who says he is on the fence. He said he was 65% against 45% for. I have another appt with a different RO in two weeks.  I did just see the ASTRO study was presented at a Radiation conference in Oct.  The study looked at radiation therapy following a mastectomy in patients 1-3 pos nodes.  Basically it determined that if the patient had any of the following then radiation would be recommended.....

    *ER/PR-, lymph vascular invasion, two or three pos lymph nodes, extracapsular extension of the pos lymph nodes, Grade 3 tumor. 

    It showed 5 year recurrence if 0-1 of the above met were 3.8%.  If two or more of the above were present then 15.2%.  The study was small. 271 patients or something like that, so will see what the next RO states. My 1st RO appt was prior to the study results.  Good luck everyone in making your decisions. 

  • hoping4answers
    hoping4answers Member Posts: 14
    edited November 2011

    Sorry for the last reply...I ended up having 25 radiation treatments wit my tissue expander in.  I had my swap in December of 2009 and thought I was fine, but by February 2010, my tissue would no longer hold the implant.  I had a DIEP in Feb 2009.  It was a miserable surgical recovery, but within a month, I was so much happier with my DIEP than I ever was with my implant, it turned out to be a blessing in disguise.  I am thrilled with my reconstruction and have no regrets about the radiation. 

  • hoping4answers
    hoping4answers Member Posts: 14
    edited November 2011

    Wow, I am not paying attention. I tried to say "sorry for the SLOW reply.  My surgery was in Feb 2010.  

     I am happy to answer any questions concerning my implant loss and DIEP.

    Good luck to both of you. 

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