Radiation after BM beneficial to pre-menepausal women?

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nanadada
nanadada Member Posts: 76
edited June 2014 in Young With Breast Cancer

Hello ladies...

I am 37 yrs old and diag in sept and finished my last tx of tch on the 10th, still going through the SE, but i keep reminding myself its almost over.

So I'm facing another decision re:tx

I had a consult with a rad onc and he is advising 25 rounds and 5 boost of rads!uggghhhhh

I did have 2 positive nodes.... BM and invasive vascular involvement. And than there is the age factor...women under 40, should strongly consider!

Wanted to get some feedback if any of you had to come close to making such decision.

Thank you...Rose

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2010

    Im a few years younger than you. Rads were a given due to the size of my original tumor. My onc and rad onc both recommended rads. They also said my age played a big factor. I had no nodes +.

    Rads is really quite doable. I think being younger, and having more years ahead of us we really need to get this disease under control the first time.

    Some woman might say, "well if I recur then Ill get the rads at that time." Why would you wait to you recur? I personally, did not want to go through any of this garbage again. I wanted to make sure that I did everything I could do now. Oh...and who is to gurantee if you god forbid recurred locally...that it hasnt spread anywhere else.

    You having 2 lymph nodes positive, would put you in that grey area...I think not doing rads is a big gamble...BIG.

    Again...its everybod's personal decision.

    Good luck.

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  • nanadada
    nanadada Member Posts: 76
    edited March 2010

    Dear Lexislove...

    Thanks for replying ...

    I have been an avid researcher since my journey started back in Sept. Halfway through my chemo I approached my onc and asked him about rads and what ive read about the effects on premenepausal women with 1-3 nodes, and he told me that he was going to refer me but I beat him to it. I have the same mentality, get it over with NOW, not later, but I will admit that although I felt strong from the beginning about rads, being told I have to do IT still srinks! Having the 2 node + and age puts me in that gray area, but I'm a bit taken back by the % of recurr. Deep down I know what I have to do, dont want to have any regrets. As far as the SE, is it the fatigue the most dibilitating? I do have expanders, so im concerned about recon, but I will addresss that with my plastic surgeon. Thanks again, Rose

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2010

    I had radiation with my expander in.

    I took my time with the whole expander process. I waited 8 weeks after rads for my skin to settle down before I started to do fills. I actually just had my exchange surgery on Jan 28th. I finished rads June 2008.

    The fills with the expander after rads can be a little sore. You may only be able to do 50 cc's at one time. I took Robaxcin(sp?) to help with discomfort.

    As for the rads se's.....yes I was more fatigued. Especially come Friday, but I got the weekend to rest. I did find when I finished rads....it took about 10 days to start feeling better. Rads have somewhat a cumultive effect. So when you start...you'll think this isnt so bad. But as the weeks go on...youll get a little more..little more tired. It is completely doable. And yes, I think you know deep down what you need to do. Don't leave no stone un turned...and no could have's ...should haves. I had/have a BC check list in my head. Chemo...DONE, mastectomy....DONE...rads....DONE, Herceptin.....DONE....exchange...DONE, ooph...comin up.

    Be well.

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  • weety
    weety Member Posts: 1,163
    edited March 2010

    You know, I agree with Lexislove, you really don't want to leave any stone unturned, especially because of your young age.  I, too, had mastectomy, chemo, herceptin, radiation and now an ooph/hysterectomy coming up as well.  I was 38 and breastfeeding when I was diagnosed and the age thing was always a part of every talk and consult I had with every doc I saw.  I got so sick of hearing "you're young and it's aggressive. . ." Blah, Blah, Blah. . . it was always the same thing.  I was recommended for radiation, too, even though I didn't have any positive nodes and had gotten a mastectomy.  At first the rad onc said I was in the gray area, but because of my age and because it was aggressive, (I told you I already knew what she was going to say!)  that she was recommending 27 rad treatments to the chest wall to prevent a recurrence.  She said that although local recurrences weren't as dangerous as other recurrences (metastastic) that in some research, up to 80% of women with a local recurrence go on to have mets.  WOW!  She took my case to her board and called the next day and said that it was unanimous--I needed the radiation.  I think I actually had a bigger "meltdown" over hearing I had to have rads then I did with the chemo, because this time, I thought I was done, just to find out I wasn't.  Radiation was really not that bad, though, especially when you compare it to chemo.  The way I look at it, is if, and a really big IF this cancer ever comes back, at least I won't be able to second guess my treatment and wish I had been more aggressive.  Hope our stories/experiences can help with your decision.  I HATE decisions.

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2010

    Weety...

    You brought up a good point about the 80% of local recurrences end up eventually metastatic. I read this in Dr. Susan Loves breast book. Now...I kinda think she is flaky especially with her defending those supposive new guidelines and all...

    But...a stat/quote is just that.

    I persoanlly can't stand that term "grey area". And then woman are left to make the decision for themselves. I think a lot of woman are scared of rads and se's and that makes them decide NOT to get rads. Or they think..."well I had a bilateral mastectomy so I don't need rads." <sigh>

    I think I just had my first rant...lol. 

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  • nanadada
    nanadada Member Posts: 76
    edited March 2010

    Dear Lexislove & Weety...

    You are both soo right! No looking back and no regrets! I was told just chemo so when I started researching and looking into rads and alot of what I read was a strong indication that rads is essential in a young womens tx, I felt sick to my stomache! I remember thinking to myself, HERE we go again! I just want to be done. Its true, although I feel we all KNOW whats right for us, Its still real hard to have the onc confir that Rads is strongly recommended! If there is 1 thing i learned from this whole thing, is to listen to my gut! No hx of BC in my family, no reason to of gone to do a mammo, just made an appt out of the blue and went, BAM, BC!!!!! So, its like my surgeon told me, I need to be as AGGRESSIVE as i can!

    Another point I want to make, these DR's need to stop telling US we are in the gray area! We already know that! That Is why i made the appt in the 1st place! I went for 2 opinions re: rads...

    1st dr: Well you can really go both ways, you have to weigh the pro/cons for yourself! I turned around and said, "All the info that you told me today, I had already researched myself! I need a dr that will look @ MY specific case and recomm what is BEST for me! I donot have a MD after my name! I was soo upset! I left that appt in distress! When I went to see my 2nd onc, I told his nurse, no CIRCULING, I need to know whats being recomm dor ME! He did that!!!! Sorry ladies, had to vent!

    Bottom line, this cancer is sneaky and we need to do whatever WE can! Thanks soo much for the input, it has absolutely helped! At this time, I have to wait to see what my PS recomm, rads before or after exchange and we go from there!

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  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited March 2010
    Nadadada- your story sounds very similar to mine.  No history of BC, no reason to get a mammogram, but I felt like at 37 I should at least get a baseline.  BAM!  BC.  So, I've had a lumpectomy (succesful with clear margins) and then a Sentinel Node Biopsy that was negative initially then positive.  Now I have to go back to complete the node dissection so they can see how many nodes are positive.  I'm planning on having a Bilateral Mastectomy now instead of just the node completeion.  Everytime I have asked the question about rads, I am told I don't need them if I get the mastectomy.  I am glad to come across your post because now I will cite the 80% local recurrence to Mets stat.  HELLO!  If I am already giving up this whole year to cancer, I want to do it right.  I want to know that I did anything and everything to improve my chances of not dealing with this again. 
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  • nanadada
    nanadada Member Posts: 76
    edited March 2010

    Georgiagirlbird:

    This BC is unpredicatble, and for that reason alone one must conquet all avenues. We do have very familiar stories, and if the is 1 lesson I learned from all of this is that one must trust theu gutt feeling. I trusted mine and you did too, thats why we went to do a mammo for no reason and IT saved ourlives!

    The radiation thing sneaked up on me because I thought I was done after chemo, but I research and researched about it and qusetioned it and it lead me to the possibility of strongly having to do IT! Because of our age, the node involvement and I had vascular involvement it does tend to benefit a pre-menapausal woman to do rads with a masectomy. Good Luck

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