Opinion regarding radiation

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First, I understand that we're not medical experts here but I thought I would ask women who have experienced this. From my history, you can see that I had IDC and a very large tumor of approx. 7 cm. At the time of my biopsy, my BS aspirated one of my lymph nodes and did not find any cancer cells. Of course, this doesn't mean that there weren't any but none were found. The PET scan was hazy as to the lymph nodes. I had neoadjuvant TCH therapy and a complete pathologic response. Pathology after my BMX showed dead tumor cells in the breast and no evidence that there was cancer in the two sentinel lymph nodes. My MO and BS believed I did not require radiation. I had tissue expanders placed and had a first fill. What fun that was! Anyway my MO, as is his habit, still referred me to the RO for a consultation. I had that this past Monday. The RO said that he recommends everyone have radiation with the size tumor I had regardless of lymph nodes. I understand that there is a protocol for radiation in any tumor greater than 5 cm but I am uncomfortable with this given that there was no evidence of cancer in the lymph nodes and that I had a complete pathologic response.

He said that there was a study wherein 50% of women who had a positive lymph node received radiation and 50% did not. I could not join that study because I had no positive lymph nodes. So, I asked him if there are 50% of women who are in a worse place than I am are not receiving radiation, does it make sense for me to? I would prefer, if possible, to keep radiation in my back pocket in case something happens in the future. He told me to get a second opinion which I'm doing.

I also understand that there is a conference next week where a situation like mine is being presented with data. I would love to see what the data is on my situation.

Any thoughts?

Jennifer

Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    I didn't do rads the first time so I was able to use it when I recurred. Would I have recurred if I'd done it the first time? Who knows. But I did get 7 years out of surgery alone and that is pretty good. No chemo either which means when I recurred I could try an AI before I'll have to move to an IV chemo.

    Rads is pretty serious and I now have radiation pneumonitis which is being treated with steroids which is pretty serious too.

    If you could avoid it that would be better of course. My tumour was at 6 o'clock right over my heart and lung and with no breast to help absorb some of the rays damage was inevitable.

    Are you getting a second opinion?

  • Jennj99738
    Jennj99738 Member Posts: 34
    edited December 2016

    Hi, barbe,

    I am getting a second opinion on Monday but frankly, I felt like the last RO recommends radiation to everyone because that's what he does. I don't know if it will be any different with a new RO.

    I just get the feeling that the docs look at radiation as no big deal compared to chemo and surgery so why not get it? Well, i don't feel that way. I have reconstruction going so I know that may be compromised which is important to me.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi Jennj!

    I also had neoadjuvant chemo which wiped out all my active cancer, and my lump had been 5 cm+. My MO and RO strongly recommended radiation, regardless of whether I had a lumpectomy or mastectomy. Like you, I was HER2+, and worse, my cancer was Grade 3. Unlike you, one node did test positive prior to chemo. So, they considered my cancer to be very aggressive, and I received whole breast radiation as well as radiation in the armpit. Of course, because I chose a lumpectomy, I wasn't in the middle of reconstruction, so there's that.

    There is indeed the possibility of recurrence, and it is true that once you've radiated an area, you can't radiate it again. I asked my RO about that and he said that if I had a local recurrence then maybe radiation wasn't be best solution for my particular variant of cancer.

    Good luck with your second opinion! Maybe you can get that RO to better explain the advantages/disadvantages of radiation in your situation.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2016

    Jenn - as Elaine says.. I was HER2+ and all 3 of my docs recommended rads for that reason. Since you are hormone positive, maybe they're thinking the hormonal therapy will be enough? I agree about getting a second opinion.

  • Jennj99738
    Jennj99738 Member Posts: 34
    edited December 2016

    Thanks for the information. I am definitely interested in hearing what the next RO says.

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