Oh boy you hit the mark! I had double mastectomy. And while I believe I had the best of care & doctors, somehow this was left out. Excruciating pain when trying to lift my arm. Couldn’t open my arm straight. I was still seeing my dr every week so I told her. She immediately had me signed up for therapy. I had 3 nodes removed, so I learned it was expected from a protocol, just got overlooked. I reread all my notebook I was given and nothing! I am still feeling some pain but the cording popping was a lifesaver. Knowing to wear compression sleeve and glove when traveling is comfort too. My pain did go down my chest and ribs. And still does when I really stretch. It’s still there, but I am aware what the pain is and try to stretch it out 2 years later.
I wrote to the head of the department to let him know that although they helped me, I would have appreciated knowing beforehand.
One aspect I’m sure of; they tried very hard not to overwhelm cancer treatment patients. I wanted to know everything. They instead took me a step at a time. I knew radiation was coming, but they kept me in the present. It was a good thing, bc my symptoms overwhelmed me many times. For example, my tongue kept swelling up. I even made a microfiber little tongue ‘pillowcase’ to keep it away from my teeth. I can laugh about it now. I thought I had a great new invention. That’s how wrapped up we become. But it still would have been better to know what was happening w my arm before it happened. Best I can offer is to write and let them know to include it in their ‘what you should know’ notebook.

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