Fatigue is worse after radiation

I agree with the white coat conspiracy of silence. I told my surgeon NO to radiology. Surgeon kept going and want to set me up with the radiologist before surgery. I said no to radiology, period. They have their agenda to make sure they have good outcomes for their practice and the money making opportunities for the group. I have informed consent and say NO. We did all the statics for my stage/grade, no nodes and outcomes. At five years without radiation and with drugs there was only a 0.5% difference. There was a larger mortality rate at ten years and who know what other comorbidity that group of patients had but the statical difference was 2% difference. If you have a low stage/grade and have clear margins with your surgery they need to stop brutalizing women with too much treatment. As Dr. McDougall said breast cancer treatment is barbaric and brutal for women. I do not agree with all of Dr. McDougall thoughts but this one is sound with statics.

The really sad part is we don't discover platforms like this one until after we have had the bad experience. I asked for "peer support" and never heard again from the social worker. I asked repeatedly for support when I ended up with stage two lymphedema. I was given cockamamie responses such as "no one else needs it" or "People are too ashamed to come forward." I was getting radiation during Covid. No one ever suggested online support. I can't believe that doctors and nurses don't know about Mayo Clinic Connect or SHARE Cancer Support or other organizations. The message to me was I was a complainer and I should be ashamed for having lymphedema!
I am glad to have found support, but women need the support from other women who have been through this from the moment they get their diagnosis.

You were very courageous to say no and mean no. I felt bullied into treatment. I had been through all the treatment when the father of a childhood friend wrote me saying, "I'm sure that your doctor will review with you all of your options and you will be able to make a decision that is best for you." I thought. "I had options?" No one ever discussed anything with me. It was their way or the high way. Doctors and nurses would shrug one shoulder (and it started to look rehearsed) and they would say, "It's up to you. It's you're body." And I knew they disapproved. How many years out since surgery are you?

I had 32 axillary lymph nodes removed - 8 when we did the initial lumpectomy, thinking *only* 3 were involved, but the post-operative pathology showed 6 involved, so they went back and removed the whole “packet”, which was 24 more, to be sure we were clear. Thankfully, no more were found to be cancerous, but it made me kind of wish we could put them back. The lymphedema, cording, and numbness has been harder than anything else, made worse with radiation. I was treated at Mayo in Rochester. My understanding is they try not to do it if there are only a couple nodes involved, but once there are more, the indication is to do a full dissection. My surgeon felt she was on the fence with mine during the first surgery with 3 known - she was trying to save me from the full dissection, but once they saw 6, she felt it was necessary.

As for fatigue - I am only 3 months out post-radiation. I’m on letrozole and just started verzenio. Also getting zometa injections every 3 months. Not sure which is contributing most to my fatigue but I am EXHAUSTED! I think they all are, plus stress. I have been doing acupuncture which helps many of my other symptoms. The fatigue is hard to touch though.

Do you have a LANA certified Lymphedema therapist? If you don't I am sure Mayo could help you with finding someone. LANA is Lymphedema Association of North America. These professionals are usually PTs who have special training in lymphedema and the decompression massage. I first saw a regular PT then a LANA certified therapist. Seeing someone specifically trained and experienced with lymphedema made a huge difference. She She was able to easily and painlessly break up the cording, which helped a great deal. She also taught me many skills to manage the lymphedema.
Although everyone told me the numbness was permanent, I did recover some feeling after a long time. However, I have nerve pain in the form of occasional "shocks" and intense itching in the lymphedemedtous area on my chest wall.

As for post radiation fatigue, three months isn't very long. Be patient with yourself. You've been through the wringer and you still are going through it...

It sounds counter intuitive when you're exhausted but I have found that getting some exercise, even gentle exercise, gives me energy. I have joined Zoom classes specifically for women who have had cancer treatment.
Keep asking your doctors (oncologist, surgeon, PCP...) about the fatigue.
Best wishes.