Should I go with Radiation?

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usen2010
usen2010 Member Posts: 8
edited June 2014 in Radiation Therapy - Before, During, and After

Hi,

I am facing a decision here since my RO said it's a grey area. I had mastectomy back in Jan and the report showed I had multiple IDCs (the largest one is 1 cm) with DCISs attach to them, and lymph node negative. The margin for the tumors is clear but is very close to both chest wall and the front. The RO said from the textbook, node-neg with mastectomy wouldn't need rediation, but consider my age (44) and tumor grade (2-3), he would recommand rediation to reduce the recurrence from 15% to 5%. I think he meant local recurrence. But consider I am currently undergoing chemotherapy, I am not sure how many benefits would I get from the radiation. Also I've heard that the radiation might have long-term SE, which made me hesitate to do so.

I just want to come here to see if there are other sisters had similar situation and how you made your decision. Thanks.

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited June 2011

    Oh my gosh, I am in the same boat as you in terms of decision making.  I have been wrestling with this decision.  I had mastectomy, with good margins and am 45.  Two smallish (under 2 cm) tumors, lots of DCIS, but 2 positive nodes.  So I am a higher risk than you in terms of node positive and grade 3 tumor, but you are a higher risk from having a tumor near the chest wall.  I was told I am in the grey area too, and had two opinions, one at Sloan Kettering said it could reduce recurrence from 17% to 7% (similar numbers you were given). 

    It's a hard decision to make, but a 10% reduction in risk seems significant to me.  Is there a particular side effect you are concerned about?

    I am told that at the planning CT scan they can see whether the heart can be protected.  Also, if the axilla is not radiated, the risk of lymphadema decreases. I would be interested to know what decision you make.

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited June 2011

    usen2010 - definitely get a second or third opinion.  My situation is a little different.  I was totally against radiation, especially since it was on my left side.  Had a BMX.  Clear margins, no lymph-vascular invasion, but fell into grey area because of 2 positive nodes.  I had also refused ALND.  I did end up radiating my axilla and superclavical, but not chest wall.  The deciding factor for me was because I was clinically node negative before surgery (with ultra sound, MRI, mammogram, and physical exams), and one of the RO's I consulted with, and eventually went to for treatment, said because of my situation, if I had a recurrance, odds were we would not know until it spread to other organs since I was clinically node negative.  That sold me.  Once I made the decision, I felt very good about it.  I know for me, it was to right decision.

    Every situation is different.  Do your research, ask others like you are here on the forum, and go for other professional opinions.  You will make the correct decision for yourself.   

    Best wishes. 

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  • sundermom
    sundermom Member Posts: 463
    edited June 2011

    I had a BMX in December 2010 and had two positive nodes.  I am 37.  I was told by my MO that I fell into a gray area for rads - normally 4+ nodes is the ticket to radiation.  He sent me to the RO for a consult.  The RO was adamant that I would greatly benefit from rads.  "Less than 10% recurrence rate for you", he said if you opt to radiation - similar to what the two of you were told. I opted for rads.  I'm almost done and it's been a breeze compared to chemo.  I figured my chances of getting BC under the age of 40 were pretty slim to begin with so what's to say I wouldn't fall into that group that suffers a recurrence without the rads! 

    Tammy  

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  • julianna51
    julianna51 Member Posts: 438
    edited June 2011

    I am struggling with this right now too.  In fact, I'm scheduled to start radiation in early August but every day it is on my mind.   I thought with the BMX I wouldn't have to have radiation but I've seen 3 different ROs and they are all telling me that I have about a  15% chance of recurrence without radiation and can take that down to 5% or less with radiation.   This is all because of a narrow margin close to my skin.   I am feeling so discouraged with it.   I want to do everything I can to prevent anything more but I'm also concerned about what the radiation will do to my reconstruction.  I have TEs in place and am so worried.   I do not want to do radiation!  But as mammaoftwo said....10% seems like a pretty fair amount....   I've been trying to do a lot of research on this and just get more and more confused about what to do.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2011

    usen,

    That chest wall thing.... well.... it does matter. How much I wish it didn't. Look at my stats, if you want to talk, PM me. Happy to give you the benefit of my experience.

    However, radiation isn't a guarantee either. But it does increase your odds.

    *susan* 

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited June 2011
    julianna51 - if you do rads with TEs, make sure you work with your PS so you are filled before you start rads.  Some PS prefer that the TEs get radiated instead of implants, some PS are OK with implants getting radiated - it all depends on your particular situation and your PS, but most PS will not stretch your skin once it is radiated.
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  • julianna51
    julianna51 Member Posts: 438
    edited June 2011

    Yes, my PS has been talking with the RO and we are working on getting my fills done.  Not sure what size I am going to get to be.  I guess they will leave the TEs in during the radiation and some time after will do the exchange for the implants.   I can tell my PS is not too happy about the radiation but he isn't saying anything.  

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  • usen2010
    usen2010 Member Posts: 8
    edited June 2011

    Thanks everyone for the reply.

    Some other facts that prevent me from making decision are - mine was left side too, don't know how they are going to protect my heart. Also, I have TE, the radiation will affect this part too. The RO said the rediation might increase the chance of infection from 10% to 20%, and it could happen months after the radiation...

    My PS said the radiation should be done after all the fills but BEFORE the implant. There are something they can not handle with the implant in place (I forgot what the something is).

    I've an appt. with my RO today and will update you ladies later.

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  • Adey
    Adey Member Posts: 3,610
    edited June 2011

    I had the close to chest wall problem too.  I got 3 or 4 RO opinions (trying to get out of it) but finally decided to go through with rads and finished the end of March.  I have TEs and was expanded before starting.  I had slight burning, like a sunburn, and tenderness, no pealing or blisters, still tan.  Scheduled for exchange on 9/01.  Almost done!  Except for the daily pill and follow ups.  Yay.  Good luck with the decision making.

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  • julianna51
    julianna51 Member Posts: 438
    edited July 2011

    janey3 - Yay!   So happy you don't have to have rads!

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  • var126
    var126 Member Posts: 6
    edited July 2011

    I am left side, too, and they are doing breath hold technique here. They seem to think this pulls the heart out of the way.  I am hoping so : )

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited July 2011

    I was left-sided, too, and had my rads in the prone (face down) position, which is a very good and safer option -- if your place offers it, I'd suggest seeing if you are able to have them that way. My RO didn't believe holding one's breath was effective, but each dr. seems to have his/her own preferences.

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  • var126
    var126 Member Posts: 6
    edited July 2011

    I was evaluated for prone and breath hold. They told me what's best depends on the location of the particular tumor. I guess we are all finding out that everyone's cancer has its own individual characteristics. (I'd personally rather be prone than sucking my breath in!)

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2011

    So glad you dont have to do the RADS......most people say ITS A WALK IN THE PARK well it really is not.If anyone want to read what happens after rads go to the thread AFTER RADS.....there are many complications that most of us are very unaware of...All the DRs. say watch for burns and fatigue....NOT TRUE..

    Good luck that you dont have to do them...God bless.hugggggggs K

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  • shortlady
    shortlady Member Posts: 78
    edited July 2011

    From the very beginning I was told I should do radiation.  It was just a matter of needing it on both sides or just on side.  The RO decided I only needed it on my left side.  My RO comes very highly recommended, but I was not sure I wanted radiation because of the problems it might cause with reconstruction. After a long talk my Ro convinced me that at age 48 it would really help to keep the cancer from coming back.  I had read  on line  about several women that had their cancer return up to 10 years after treatment.  From what I read one should do everything you can the first time you get cancer because it is even harder to treat when if it returns.  

    My PS filled my tissue expanders up before radiation and I waited almost a year after radiation to have my exchange.  This allowed my muscle and skin to heal.  2 weeks from exchange and I am doing great so far.  

    Regarding radiation and the heart.  I do not remember there being any concern. They did place some stuff on me that they said acted like skin.  It was put there so that the rays would go only the depth it needed to go.   I have been seeing a cardiologist for a while now just to make sure my heart was doing okay with the herceptin.  There has been no problems so far.

    I hope this helps some.   

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