Radiation --no radiation

lollys
lollys Member Posts: 205
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was dx in February 2009--multifocal infiltrating mammary ca with lymphatic invasion--ductal and lobular--decided on bilateral mastectomies--tumor size was small--<1 cm--had 2 out of 30 nodes --decided on aggressive chemo with Adriamycin/Cytoxin and taxol-- just finished chemo!D!!doing ok--surgeon felt no rads needed as the tumor was small and only 2 nodes out of 30 --I am er+ and pr+ her2 negative so i will be on Arimidex ( iam 61 so post menopausal) pathologists said margins were clear although only a 1-1.5 mm margin not the ideal of >2mm--so that has caused some difference of opinion regarding radiation-- I also had implants at the time of surgery which can be a major problem with rads--also wrroied about severe lymphedema since i had 30 nodes removed--anyway--I am meeting with another rad. onc. today to ask questions--problem is I am in a gray zone according to allthe docs.  not enough research done on low risk reoccurance--so do i risk the side effects and complications of radiation in my case  or risk the possibility of reoccurance in this "low risk" situation--everyday i change my mind - - anyone out there with implants  who had rads and chemo ???? thanks Lolly

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  • lollys
    lollys Member Posts: 205
    edited August 2009

    Thank you SherriG for quick response--I think I am going to go with rads (at least that is how i feel today) still worried about all the complications but it helps to hear some dont have them--still need to talk to my med. onc again for more reassurance--but I ahve been aggressive so fair--did you have a mastectomy or lumpectomy and did you have positive nodes?? and did you have rads to the nodes--the rad. once said he could just radiate the chest wall and no nodes but--just dont know if that is the way to go--will keep you posted--Lolly

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  • lilablue
    lilablue Member Posts: 8
    edited August 2009

    Hi Lollys,

    I just replied to another post for the same type of question. Similarities with you but much young at diagnosis (35 years old): bifocal ILC, tumor size (1.1 cm and 0.8cm) in right breast. Had skin sparing right mastectomy with immediate implant reconstruction. I had then chemo (TC protocol) and then 22 sessions of radiation. Initially, I was not going to have radiation because margins were clear (more than 5 mm) but the radio.onc opted for additional security because I kept the skin. I went though it and did not have much side effects. No impacts to the implant, my skin got lightely sunburn but not much.I only got radiation in the breast not in the axillary area because even if I had 1 positive node, it was a micrometastasis. Radio onc. adapt the dose of radiation based on our situation (only radiating the skin without damaging the implant). I would go for it. PM if you want more details. I have somewhere in my files the dose I receive and can let you know more details. Happy to hear that you also think about going for rads.

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  • lollys
    lollys Member Posts: 205
    edited August 2009

    Thank you lilablue for your response--when you said you kept the skin what did you mean did you keep your nipple area?? my rad. onc said he could also just do the breas not he axilla even though I  did lymphatic invasion so I am confused--he also said 30 treatments with 3 boosts --will be meeting with my onc. tomorrow for further clarification--will keep you posted glad to hear you had a positive experience and hope to have the same--just scared since I am just now starting to feel better from chemo and hate to go backwards but we will see--thanks again Lolly (Laura) 

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    My situation was different (masectomy, 4/15 pos nodes) but the same difference of opinion re rads.  Medical onc said no, radiologist #1 "not sure", radiologist #2 "ABSOLUTELY"  Radiologist #3 "probably not....so my onc presented it at the tumor board, and they came to an agreement that I should have rads.  It was not too bad, but did keep my (later) implant from being large enough and so the reconstruction is still not done--someday, I will have a lat flap, but for now, I just can't think about it.  ENOUGH!  But survival is better then beauty, still don't have rads for a tiny survival benefit. Just get opinions until you are satisfied.  Jody

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  • lollys
    lollys Member Posts: 205
    edited August 2009

    Thank you Jody--will meet with my onc. today--afraid to do it --afraid not to do it!!! I thinkyou did the right thing though from what I have read 4 nodes is the point where my docs have said rads are needed --of course it seems opinions change on a daily bases--hope you are doing well --will keep you posted --Laura

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  • lollys
    lollys Member Posts: 205
    edited August 2009

    Well just met with the oncologist and I am doing the rads--long story short eventhough Iam in the gray zone he gave me reasons to do it--doing everything Ican- since I had a close margin and a large positive sentinnal node plus another one he felt that was indication eventhough I dont fit into the normal criteria and  my surgeon said i didnt need it--want to do everything i can just have to hope and pray i dont get the lymphedema and other possible  longterm sideffects--will keep you all posted--Lolly

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  • lilablue
    lilablue Member Posts: 8
    edited August 2009

    Hi Lolly,

    Glad to read about your decision. I hope everything will be fine. To respond to your question: I kept most of the breast skin but not the nipple because you need the vessels to irrigate the nipple. Otherwise, the nipple necroses. Good luck to you and keep us posted!

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  • trigeek
    trigeek Member Posts: 916
    edited August 2009

    Hey Lolly, I differed from you that I had sentinel node biopsy and not axillary dissection please check my previous thread.. hope it helps. I ended up getting rads with implants (after exchange) and they seem to be fine.

    http://community.breastcancer.org/forum/70/topic/692289?page=1#post_705170

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