Making decision on radiation

KristinaL

Hello,

I am new to this forum and hope meme res can share their opinions. I’m 37 years old and was diagnosed with stage 2 hormonal breast cancer. I went through chemotherapy and bilateral mastectomy with axillary lymph node dissection. Out of 15 nodes removed one tested positive for cancer. Pathology showed microscopic amount of cancer in that node. My oncologist wants me to go through radiation. My surgeon says I don’t need. There is a risk of lymphedema.

At this point I don’t know what to do. Am I being over treated? What is the testing that gives you numbers for recurrence?

Thank you and be well :)

ajfunstuff

Dear KristinaL, I have been radiated and wanted to quit after the third treatment of 30 I was slated to receive and they strong-armed me to get the full treatments so I went through it. It caused a hematoma that bothers me daily that was drained repeatedly but kept coming back and then additional surgery to get rid of it and it came back and I have lived with the pain for 10 years. Had to wear a drain with bag for a whole month and it still wouldn't go away. On top of that, I had "radiation recall" which also was horrible. If you trust your surgeon, I would encourage you to skip radiation. I don't have it but my friend does and she says Lymphedema sucks.

KristinaL

Dear ajfunstuff,

Thank you for your comment and sharing your experience. I heard that lymphedema is very painful. My oncologist told me in the beginning that my breast cancer is very common and very treatable. I went through chemotherapy, I had bilateral mastectomy, I will have hormonal therapy. I’m recommended radiation because one lymph node had microscopic amount of cancer. That node and 14 other were removed. I feel I’m getting every treatment under the sun to treat this “curable cancer”. I understand I’m young and my oncologist wants to make sure I don’t have recurrence, but I feel like I’m being over treated. Besides cancer I have no other medical issues.

ajfunstuff

https://csn.cancer.org/discussion/comment/1692021#Comment_1692021

I assume you have read about lymphedema and that it can occur anytime in your life once lymph nodes have been removed. Blood pressure cuffs, needle sticks to get a blood test, even airplane pressurized cabins can bring it on and once you have it, it's there for life and no cure for it. If nodes were removed on only one side, always insist the PAs and doctors use the other arm. There are compression sleeves that are very fashionable if you do get lymphedema. See www.lymphedivas.com

KristinaL

Yes, I did read about it and it scares me. Lymphedema is the last thing I want after all I’ve gone through. I have nerve damage from the surgery. Part of my arm is tingly and part is numb. I can’t lift my arm ver well. I have physical therapy scheduled. This is painful and uncomfortable, so I can only imagine what lymphedema feels like.

ajfunstuff

https://csn.cancer.org/discussion/comment/1692041#Comment_1692041

It all sucks. Cancer sucks. Treatment sucks.Some chemo can cause neuropathy in hands and feet. Just don't lose sight of who you are and surround yourself with the warmth of love and cut loose those who are not supportive. I know there are times like you're heading toward the brink but stay strong and self advocate for the care you need. Sometimes you even have to change doctors if you're being pressured to handle something in a way you're not comfortable. You've got this and you'll come out the other side. If PT doesn't help the nerve recover and it was sloppy surgery that caused it, consult an attorney. Surgeons need to be held accountable for mistakes. There is only a two-year statute of limitations.