Feb 9, 2022 06:42AM - edited Feb 9, 2022 06:44AM by DebbieM1958

Re. Radiation - the specialist I talked to has sort of left it up to me to decide if I want it or not. Looking for any input. She says previously in years gone by they would do the surgery first and then the chemo. If that were still the case, based on my pathology she would not recommend radiation. Now however they do chemo first and then surgery. Although they confirm they have removed everything and my margins are clear she says there is not enough research yet about whether radiation would be beneficial for me. I asked her what she would do - she said she would have to think about it strongly. I am leaning towards not doing it but want to make an informed decision. Look forward to hearing from anyone. Thanks.

Also re. banding/cording after my double mastectomy - anyone else had this tightness and discomfort? I have read that its pretty common and can last weeks or months. Any suggestions? I am nearly 3 weeks post surgery now and starting some more advanced exercises.

Thanks so much.

Feb 9, 2022 08:41AM oldladyblue wrote:

Radiation was MUCH easier for me than chemo, side effects almost negligible, and now I am two weeks post radiation and things are pretty normal again. Just a bit of skin discoloration as a result. If a doctor suggests you need radiation, I would strongly consider it. It probably will be much easier on you than chemo was. I personally know 2 women in my life who had mastectomy surgery NOT followed by radiation who ended up with metastatic cancer 10-13 years after their prior breast cancers. One called me last year when she found out about my diagnosis to urge me to do everything the doctors recommended. I do not know the specifics of their cancers or treatments, but I learned enough from them that I will do everything to a T that the doctors recommend. Perhaps you need to get a second opinion from another doctor, as I did when I was given a choice between AC and TC chemo. The second doctor I saw did not give me a choice, but told me what would be medically best (TC).

Feb 9, 2022 06:17PM CMR79 wrote:

Hi Debbie-

I highly recommend PT. I was my own advocate and contacted my surgeon about getting a PT referral because 3 months out past my bilateral mastectomy I still had limited movement in my left arm. Found out I had cording and just after a few sessions, I had so much improvement! I will continue with PT through radiation as well so I don’t regress.

Regarding radiation, I personally would do anything to fight it. I will start radiation in April once I finish chemo. I initially was diagnosed with stage 1B and they recommended radiation after surgery. After surgery it was found in 4 lymph nodes so chemo was added. Radiation was always part of treatment.

mindthief- exactly how do I know if chemo worked? I had surgery first so I know the cancer was removed but for peace of mind would like to have a PET scan for assurance since I had lymph node involvement