radiation after mastectomy

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Hello,

I was diagnosed in March and had bilateral mastectomy with DIEP in May. In July started chemo and my last dose of T/C is next week. I saw radiologist who told me no need for radiation. At first I was happy, but now I am worried I am not doing everything.

Anybody had radiation after mastectomy and chemo? I know that everybody's situation is different, but still.

I did not do oncotype as it is not available in Canada.

Comments

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited September 2010

    Nikola

    I will be curious to hear the responses you get.  I also had a mastectomy and chemo.  I saw my BS today and he started down the path of saying I didn't need radiation if I didn't want it.  I had 4 lymphn nodes that were positive and one tumor was only .5mm from my chest wall.  I insisted that he still give me the rad onc referral.  I have that consult next week.   I am anxious to hear what they have to say because like you I want to be sure I do everything I can.  I didn't have oncotype done because I was staged at IIIa and they don't do it for stage III & IV.

    I have decided if they don't recommend radiation on the consult I am going to get a second opinion.  Just a thought for you - usually second opinions don't cost anything and it might give you peace of mind.

    Either way, I will be anxious to see what other responses you get.

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited September 2010

    Nikola

    I will be curious to hear the responses you get.  I also had a mastectomy and chemo.  I saw my BS today and he started down the path of saying I didn't need radiation if I didn't want it.  I had 4 lymphn nodes that were positive and one tumor was only .5mm from my chest wall.  I insisted that he still give me the rad onc referral.  I have that consult next week.   I am anxious to hear what they have to say because like you I want to be sure I do everything I can.  I didn't have oncotype done because I was staged at IIIa and they don't do it for stage III & IV.

    I have decided if they don't recommend radiation on the consult I am going to get a second opinion.  Just a thought for you - usually second opinions don't cost anything and it might give you peace of mind.

    Either way, I will be anxious to see what other responses you get.

  • imbell
    imbell Member Posts: 659
    edited March 2011

    I don't like the way decisions are made in Canada based on statistics rather than need. I had a mastectomyn in order to have radiation. I've had a recurrence in the same spot. It would have made sense that if my onc had done a CTscan or Pet Scan (preferably the latter )that would have shown if there was any residual cancer). This year  have had 3 CT scans and 3 bone scans and one pet scan. More aggressive up front could have prevented all this cost.

  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2010

    I had a mast, chemo & rads.  The reason for the rads was quite specific.  I had a positive node with extracapsular extension (bc growing out of the node), and I also had a 1mm, unspecified margin because of a tiny "surprise" bc lesion my BS didn't know about.  It was only found during the final pathology, so the margins on that little bit of tissue had not been inked, and there was no way to tell at that point what it had been 1mm from. 

    So, from my experience, I would be concerned if you have specific things like this in your pathology.  Nikola, in your situation, if you have lingering concerns about what you've been told, maybe get a second opinion, just to ease your mind.  Jackie, I think your situation sounds like you would benefit from RT, but I'm not a doctor, and am just basing my opinion on my own experience and because of it, would be concerned enough about a .5mm margin against a chest wall to want RT.     Deanna

  • Houndmommy
    Houndmommy Member Posts: 377
    edited September 2010

    I had a MX, no chemo and did have rads.  The reason - unclear margins and since I had the MX there wasn't anymore tissue to take.  Get a second opinion and if they don't recommend rads then I wouldn't bother.  Save it in case you have a recurrence.  I really wish my margins had been clear so I wouldn't have had to have rads.  Not because they are awful but because if I have a recurrence, I can't have them again.

    Good luck!

  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2010

    Nikola, from what I understand, research does not show any better outcome with rads with fewer than 3 nodes involved, so unless you had unclear margins I would say the recommendation for no rads is standard for your situation. Oncotype testing would not make a difference for this decision since it only shows how your particular tumor would benefit from chemo.

    Jackie, your situation is very different. With 4 nodes involved and close margins I would be surprised if the rad onc doesn't recommend rads for you. And, yes, in your situation if it's not recommended you will do well to get a second opinion. Remember, a surgeon's job is to do surgery. Have you been dealing with a med onc at all? Who prescribed your chemo?

    Best of luck to both of you.

    Leah

  • nikola
    nikola Member Posts: 466
    edited September 2010

    Thanky You everybody.

    I agree with You immarybell, Canada is all in statistics. I did not get oncotype because we waited for 6 weeks for the results of Her2 (summer, not enough pathologists..) By the time we got results it was too late to be accepted into TRIALX study. That is the only way to get oncotype testing right now in Canada, unless You pay $3500 on your own.

    So, based on statistics my med onc. recommended T/C chemo. I would never know if there was any benefits for me.

    Maybe, that is the reason I would feel more secure if i do rads as well,as maybe chemo was not giving me any benefits.

    Again, based on statistics stage 1 with clear margins and no nodes involment equals no need of radiation.

    On the other hand based on statistics post mastectomy reoccurance with no nodes involvment should very low, but still Dr's are doing oncotype testings and recommending chemo. I guess it is gamble and luck.

    Sorry for my rumbling..

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited September 2010

    Thank you everyone!  I feel better getting your feedback and it sounds like Nikola does as well. 

    Leah- yes I am working with a medical onc who is doing the chemo.  I am in a clinical trial as well so I have a great clinical nurse that works with me as well. 

    The rad onc office has already called and scheduled my consult for next week.  I will keep you all posted on how that goes.  I have #6 Taxol this week which puts me half way through

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited October 2010

    Ladies, I did see the Rad Onc and he is definitely recommending radiation.  He has indicated that the close margins and the # of lymph nodes are reasons.   Also wants to hit the clavical lymph nodes because none of them were checked and the sentinal node procedure didn't work.  Interesting though - he has recommended that I have all the slaine in my expanders drawn out.  He says the expanders are going to interfere with my raditation.  He contacted my PS and together they are discussing options. 

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