Radiation after full axillary dissection????

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pamelahope
pamelahope Member Posts: 534
edited June 2014 in Lymphedema

I just got out of surgery last Monday. I had a BMX with an axillary dissection. I don't understand why radiation is recommended for this area. From what I read the reoccurence here is less than 5 percent.

Pam

Comments

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Hi Pam,

    Have you gotten the pathology report back yet on the nodes removed by axillary dissection (ALND)?  Your situation is different from mine since I had my BMX with total ALND first, and then had chemo and radiation.  I had full 3 field radiation of my chest wall, left total axilla and left supraclavicular area because of my 23/23 positive nodal count and extranodal extension.  My radiation was due to my very locally advanced disease.

    According to your dx in your signature, you had 1/14 nodes.  Are those the results of your recent ALND after you had finished chemo or did you also have nodes removed prior to your recent BMX and ALND? I would review the most recent pathology reports to confirm the actual number of involved nodes and any other indications that they found signs of active disease.  If the breast tissue and axillary nodes removed last week are free of disease I would definitely have a discussion with your medical oncologist and radiation oncologist to find out why they feel radiation is necessary in your case.

    It used to be years ago, that women who had mastectomy were not also given radiation.  Now it is not uncommon for women to have mastectomy and radiation, but it really should be determined by each individual case and presentation of disease. Make sure you feel comfortable that you have been given all the most current pathology information, and then have discussions with your docs to determine what is the best course for you.  Let us know if you have more info on why they want to do radiation also.

    Linda

  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Linda,

    I was diagnosed as a stage 2B via PET and MRI, 5 cm. One node positive at 1.3 cm.

    I then did dd ac and Taxol.

    After chemo my one node shrunk to 3mm, no evidence of extracapsular extension, and I had 14 nodes removed and one was positive at the 3mm.

    My tumors were multi focal and shrunk to 1 cm and 0.9 cm. Suspicious foci for LVI... Scared but it looks contained.

    I went to the RO and I got scared when he talked about my radiating my axillary area as I had everything removed and still can't straighten my arm. He wants to radiate the axillary, chest wall, supraclavicular and is thinking about internal mammary chain.

    I don't understand the need for the axillary as they took everything and the mammary chain seems like overkill. I was strongly against radiation but since I did not get a PCR and my doctors are all recommending it I am doing it.

    However, I don't want to overtreat. I have a bloodclotting disorder and if I live through this I have a high risk of stroke. Plus, my arm is uncomfortable so I can imagine how bad lymphadema will be...

    Pam

  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2012

    Pam, what's a PCR?

    I agree with LindaLou that you need to be comfortable with the plan and understand fully, the risks and benefits. And if you need another opinion for your information and comfort, you should get it.

    Kira

  • flopsy
    flopsy Member Posts: 365
    edited October 2012

    I would go and get a PT eval of my arm before rads starts if you have not done that already.  I would also do as lindalou has recommended on getting all info and sitting down with docs to get the best info you can.  It is your decision when all is said and done.   Do not just accept what the doctors tell you to do without doing your research and demanding answers.   I always ask my docs what they would do for their wife, mother, or daughter and see what they say then.   Ask for the percentage of treatment needed. 

    Good luck with all and hope things go well for you.  I had rads to chest wall, supraclavicular, axilla, and all nodes and am doing pretty well with it now after 2 years.  It does not bother me as much as it did for the first year.   it takes a good while for things to settle down but it will get better.   I had 5 very large ax nodes that were positive and a 3.5 cm invasive lobular tumor.  There were 2 precancers found on my path report on my noncancer side.  I am doing well with no recon because I did not want to compromise my immune system with further treatment and healing.   Could always do it later if I want but not likely to ever do that.

  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Kira, PCR is a pathological complete response.

    So flopsy you had axillary radiation with the dissection? Were you okay?

    I agree with you. I had no reconstruction and so far no plans to. I am so done with treatment.

    Pam

  • Letlet
    Letlet Member Posts: 1,053
    edited October 2012

    Hello, I am not sure of your age but my RO told me that due to my age (I was 31) that even if I had just one positive node, I would be receiving RT.

  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Pam,

    You are getting good advice from everyone here.  Looking at your picture you appear young (I just now read you are 45...that is still young but you look younger!) and I notice you are also BRACA2 positive.  I am sure this has a great deal to do with why you are getting recommendations for aggressive treatment. My approach to my cancer treatments has always been to be as aggressive as possible as long as it makes reasonable sense to me after discussing with the medical experts and doing my own research.  That does not mean I will feel no anxiety about specific treatment protocols, but it does mean I have made up my mind that the benefits outweigh the potential risks and it is within my comfort zone to make that treatment choice.

    I can tell you that for me, radiation was by far the easiest of my treatment plans.  Even with 3 fields of treatment, I would be in and out of the radiation room in less than 10 minutes.  Yes, the last couple of weeks I developed reddened, irritated skin with a few blisters, similar to a severe sunburn.  But this was totally tolerable and the good news is that skin rapidly heals once radiation treatments are completed.  The ongoing issues of radiation are continuing inflammation and scar tissue that you cannot see on the surface of your skin, but which occur at deeper levels in the tissues.  Radiation effects can persist for a year or more, but these were not effects that prevented me from feeling better and healthier the further away I got from the completion of all treatments.

    I do believe there are steps you can take to help you reduce limitations due to radiation damage and also help reduce your risk of getting Lymphedema (LE). Flopsy's recommendation to get a PT eval is an excellent one, but I would make sure it is a PT who has been certified also in treating Lymphedema. It is important that you get baseline measurements of both arms and be educated on specific do's and don'ts that can decrease your risk for LE.  Because radiation treatment causes inflammation in the body, as does chemo, the more you learn of ways to assist your lymphatic system and keep it as strong as possible, the better your chances of avoiding LE.

    I had LE before I ever started radiation, so my concern was not the fear of getting LE but how to keep it from getting worse.  Knowing what I know now, I definitely see the benefit in seeing a LE therapist throughout radiation treatments so you can keep your lymphatic system supported and in the best shape possible.  My flat chest has completely healed, scars have faded and there is no residual visible damage from radiation.  The first year or so my left chest wall was slightly darker in color...like a light tan, but even that has faded so you cannot tell the difference. 

    Please make sure you spend some time on the StepUp-SpeakOut website and our Lymphedema forums here to learn of ways to find a qualified Lymphedema Therapist and to reduce the risk of LE. Knowledge is power and when we understand why we make the choices we do, we feel more in control of our life.

    Let us know how it goes for you. 

    Linda

  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Linda, That is great advice. People say I look younger and the wig in the avatar helps!!! Not sure how I will hold up after all of this!!!!

    I will speak to my doctor about whether I need radiation to the axillary area if I had a full dissection and BMX. This stuff is confusing.

    Pam

  • KS1
    KS1 Member Posts: 632
    edited October 2012

    pamelahope, I had an ALND (22 nodes), and even though all 22 were negative, I still got axilliary radiation.  But my situation was weird (tumor was in arm).  

    My RO considered irradiating the breast on the same side as the arm, but after discussing it with her colleagues, my surgeon and me decided not to.   she had the physicist come up with several plans for hitting the axilla/arm, and then she went over the plans with me and explained exactly was and was not in the field in each plan.   You should be aware that even area that are not a target of radiation get a considerable dose.  (For example, my supraclavicular nodes were not "in the field" but even with the best plan, they still got 75% of target area dose.)  My RO is a doll ... hopefully yours will be equally open to discussing what options are available and the pros/cons of each.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2012

    Lindalou & others give very good advice. I was able to avoid rads partly due to having the DIEP flap in place (the sentinel node appeared clean on quick frozen section during surgery so reconstruction went as planned. Only after complete pathology was done were the micromets found...)

    Perhaps if the full dissection 2 weeks later had shown further involvement, my story would be different. I did have chemo and am getting annual MRI to keep an eye on the chest wall, etc

    With BRCA positive, are you also thinking about having ovaries taken out?  

  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Vinrph,

    I met a woman today with your exact same situation, micromets in the sentinel and 2a and she did not do rads. She is doing well and three years out.

    Pam

  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2012

    Always good to hear about people further down the road who are staying healthy! I'm doing at least one more year on tamoxifen and then may consider an aromatase inhibitor. My most recent MRI (a scan that is sensitive but not specific) needed ultrasound follow-up: nothing significant found...

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