Radiation -- not sure

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Tomorrow, I will be a month out of surgery -- had double mastectomy.  Prior to that, I had chemo, which I finished on 02/01/10 -- can I get a shout out!  Cool  My path report came back clean -- going in, I had 2 out of 3 postive nodes from an earlier lumpectomy, and during this surgery, my surgeon pulled more nodes in that area and they were all clean -- my path report was clear. . . from what we can tell, the chemo/surgery worked.  NOW, I am faced with whether or not to have radiation.  My surgeon understands my temptation not to, but she's not making a recommendation one way or the other, which is understandable.  She's referred me to a radiation oncologist who isn't known for just saying, "Yes, you need radiation," to everyone who walks in the door.  I'm not sure what he's going to say, but I"m just trying to think this through a little before seeing him.  Once I see him, I have to decide because radiation should occur within 6 weeks out from surgery, according to my surgeon.

I never had a large tumor -- I had ILC in the left breast and she couldn't get clear margins during the lumpectomy.  My cancer was grade 2, which I've heard is average in regards to aggressiveness. 

Grrrrrr. . . I'm so tired of all these HEAVY decisions!  I"m still pondering Tamoxifin, but I'll save that for that board.

Take care and hugs to everyone on here. . . side hug for all of us just out of surgery or a procedure.

Sammy

Comments

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited April 2010

    Sammy, I can't really tell you the pro's and con's--there are others here on this board who can.

    What i can tell you is that radiation was really simple for me.  I loved going there every day--it was my little 'job'.  everone was so kind.  I was very lucky and only had to do 19 rounds, 3 of which were boosts.  As far as 6 weeks out from surgery, I had my surgery in june, chemo in aug and started radiation in Dec.  i'd double-check that time line with the radiologist.

  • RegulJ
    RegulJ Member Posts: 244
    edited April 2010

    Dear Sammy-

    It can be a tough decision, I had the same doubts and coming from a medical background I am very aware of the risks. For me however it is another chance to kill off any potential lingering cancer cells. I am still not looking forward to it (I may start this week) but it will get done.

  • sammygrey44
    sammygrey44 Member Posts: 62
    edited April 2010

    Cowgirl and RegulJ,

    Thanks so much for your responses.  I am still in "limbo" about my decision, but I will keep y'all posted, and I will definitely get with my rad onc about the timeline --  I really don't want to be overly rushed -- I'm still sore and would like to recover a little more from surgery before having to do anything.  I'll keep y'all posted.

    Cowgirl, glad your treaments went well (encouraging:), and RegulJ, I hope your rad treatments go smoothly, which I feel certain that they will.  :)

    Take good care,

    Sammy

  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    I've been told that 6 weeks is the norm, but I won't actually be starting till about 10 or 11 weeks out.

    I had a big surgery and wanted to wait a bit longer to heal, so I was going to start 9 weeks out. My rad onc was fine with that, but there was a glitch at my first session and they had to delay another week and a half to re-do the calculations. 

    I'm a bit worried about having waited this long, as I was ready to start last Monday, but .... there's nothing I can do about it now but hope for the best.  Now I'll (hopefully!) start tomorrow. 

    My surgery was at the very end of January.

    Best of luck to you.

  • Iamstronger
    Iamstronger Member Posts: 378
    edited April 2010

    Sammy,

    I can't tell you what is right for you.  But, I have fallen into the grey area as to whether or not to have radiation.  I got one rad onc who said it is entirely up to me, I could go either way.  I had a 2nd opinion say I definitely needed it.  Then, I had a 3rd opinion who swayed to "you probably should".  So, being that I am only 44 and that it was Her2+, I have decided to do it.  I don't want to wish I would have done it later....

    Also, from the people that I have talked with, radiation is a walk in the park compared to chemo.

    Verene

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    Sammy,

     If you have had a mastectomy, they usually only recommend rads if the tumour was close to the chest wall.

    Sue

  • mnmom
    mnmom Member Posts: 2,068
    edited April 2010
    I was told by my oncologist that I would not need it but the radiologist said yes & after the cancer board met they all agreed. Mine was up right up to the chest wall. It was location that made the difference for me. I did 33 1 year ago. I tried to think of it as warm healing rays with each treatment for me it was physically pain free. I agree with cowgirl13 the techs etc were very kind. My time line was surgeries in Dec/ chemo Feb/ Rad April 09 finished in June. Best of luck with your decision.Smile
  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited April 2010

    Sammy I can't say what would be right for you, but I can say that rads was very straightforward for me.

    I was stage 3 and we get the kitchen sink thrown at us, so there was no doubt I would be advised to do rads. I had mastectomy in May, started chemo in July & finished chemo at end of October, then had 15 sessions of rads in December. I was frankly terrified of rads, but I had few side effects and didn't burn. Compared to chemo rads was a walk in the park for me.

    Good luck with your decision. 

  • sammygrey44
    sammygrey44 Member Posts: 62
    edited April 2010

    Suepen, Mnmom, Jayne, Vmarie, Sweatyspice,

    Thanks so much for y'all's responses.  My tumor was close to my left armpit -- don't think it was overly close to my chest wall, but could have been -- I'm sure my rad onc will fill me in on the geography of my chest in regards to my "past, let's keep it that way" cancer and why or why not I need rads, which I'm thinkin' he's probably going to say "yes" to rads, but he may not.  I'll be seeing my doc a week from this Friday and will let y'all (can you tell I'm from Texas!) know. Smile

    Take good care,

    Sammy

  • 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. HOWEVER, you mention that you did NOT get clear margins!  If it were me, I would do radiation if I had one suspicious sign that the cancer might not be gone.   My radonc told me that if ILC does re-appear in the lymph system that it is VERY hard to get rid of it again.  That is the one fact that hangs in my mind - even though I had clear margins and other signs that the surgery got everything.  For me, the other thing is that I will use tamoxifan - so women won't use it.   Oh - I also remember my surgeon saying that if I did lumpectomy she would want me to agree to radiation.  So - if I were in your situation - I'd be getting the rads.  In addition to MD Anderson, my surgeon & rad onc at University of Michigan are two of the best docs - and both women.  I would recommend that you go there if it is more feasible for you.   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. 
  • mnmom
    mnmom Member Posts: 2,068
    edited April 2010

    Thinking of you...hope you get the answers you are looking for @ the doc tomorrow.Smile

    Cyber hug

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