Chronic Pain after Stage 4 Breast Cancer Surgery, Chemo and Radiation

Thank you, Trixie. Nothing but "you'll just have to learn to live with it" was given by the surgical oncologist. Hard to believe but true.

Not sure I replied to your post, Trixie. Thank you for the suggestions and information,more than the oncologist gave. Think the next step is asking for a referral to a physical therapist from pcp. I appreciate all the help received from Mayo Connect.

@fiesty76
A word about surgeons in general -- I have found them to be like other specialists in that you can't ask them about anything but their specialty (a specific kind of surgery), and don't even hint that perhaps there was a problem with their work. That being said, in my area, everything seems to be targeted to specialties. For example, one can't go to a rheumatologist for (in my case) Trigger Thumb and hand arthritis. I was sent to a hand specialist/surgeon. Can't go to the rheumatologist for arthritis in my spine... was sent to a spine specialist/surgeon... and neither specialist chooses to talk about exercises which may be helpful: for those, you must be referred to a physical therapist. Vascular specialists may or may not have in-depth knowledge of lymphedema treatment. My dentist now just works on cavities... no extractions or gum health issues. For these, you go to a dental surgeon and to a periodontist (who also does the implant, if you have an extraction by the dental surgeon....). The oncologist simply suggests other specialists. Have nerve damage from the chemo? Go see a neurologist (who knows nothing about chemo damage). Have lung or heart issues from the targeted therapy? See a pulmonologist or cardiologist (who know nothing about targeted therapy). Having trouble with the hormone therapy? See an endocrinologist... etc.

And who is left to try to pull all this together into a comprehensive plan? One's poor PCP who isn't trained in the fine points of all these specialties and is trying his/her best to get us to equilibrium.

Considering the increased rates of cancer nationwide, every regional hospital needs specialists who are well-versed in oncology issues... and that's not happening. God help the patients with poor health insurance!

Yes, Elizm, our 21st century has brought about a maze of medical specialists that makes an oldie like me yearn for those days when our doctor wasn't just our primary doc, he/she was our Only doc. who actually conducted hands on exams and picked up his phone to personally refer us to a specific specialist if needed.

OTOH, there is much more knowledge now and more available treatments that didn't exist before. The trick as a patient is learning how best to navigate the maze as we advocate for ourselves, continue learning and keep our teams informed of all that is happening with us.

After researching and reading wonderful patient forum responses to my orig. question, I condensed the shared info into a page to carry with me to my next doc. apptmn't. One side of pocket folder contains the "What about this?" possible treatments page; the other pocket the numerous pages of printed out material. Will have an annual with my PCP in January and hope this will get the attention of the pcp for additional help.

You might have luck with a pain management doc. I have one who regularly impressed me with the breadth of his knowledge.

Thank you, nycoceans. Another great possible solution with the pain mgt doc!