Low Risk IDC w/ Baseline Multiple Painful Conditions

Looks like you are getting some useful responses, and should get more. But as I have 50 years of chronic pain I wanted to address that issue in the context of breast cancer treatment. It really seems like your pain is being undertreated. Have you thought about investigating a pain clinic or a doctor who is a rehabilitation specialist? The latter helped me a lot. It's unfortunately true that PCPs can under treat pain. Interestingly, in the course of cancer treatment my nephrologist insisted I get better pain control with prescription meds and my oncologist asks about my (non-cancer related) pain at every meeting. So please be straightforward with your cancer team--they may be able to help. At times the usual pain makes me feel hopeless--and that isn't good in terms of navigating cancer treatment choices. It has indeed influenced my choices, but not in an overly pessimistic way. “Mayo Clinic on Chronic Pain” is a book that helped me, too.

Thank you for your thoughtful reply Miriam. I'm sorry to hear that you also live with chronic pain. Yes, my pain is undertreated. I lost my wonderful spine specialist in LA who managed my pain very well. I then saw 2 pain mgmt docs: one wanted to admit me to the hospital and wean me down because my dose was well over 90 MME's. The other one only did injections, not med management. I had no time left before running out of my pain meds and then withdrawal and even worse pain so I lied, said I was an addict, and was placed on suboxone. It doesn't help much. I do need to find a reasonable pain doctor but they're all so afraid to prescribe in this state because of the "opioid crisis". My breast surgeon wants my pain to be better managed and referred me to the doc that wanted to wean me down if you can believe that. I'm in the process of trying to be accepted into his practice. I like your idea about a physical rehab doc! I've had it with pain mgmt! I'm going to check that out. Better mgmt will enable me to come off of my hormones as well as handle the radiation. The surgery was the easy part. Only needed 2 doses of pain meds post op. I understand about feeling hopeless my friend and to me the worst part is the disability the pain causes.. the inability to do things that might bring me joy. Now with cancer on top of it I think I'm in denial as I've remained in good spirits.. strong faith and Cymbalta help lol. You don't sound like a pessimist at all and I applaud you for finding ways to live with pain for 50 years. I'll be thinking of you and thank you again!

Thanks for your kind note! I don't think being in good spirits is being in denial--I think it is about having inner resources that transcend how the wind blows for us. More power to you--and stay in touch as treatment plan gets clearer.

I agree with @triciaot, @windyshores and @mir123 - continue what you’re doing, talk to your doctors and advocate for yourself.

I would add that the radiation treatment that is offered is typically based on what that specific location/cancer center has the equipment and expertise to provide.
The first location I went to only offered 15 radiation treatments, 5 days a week for 3 weeks, and they did not have the equipment to do prone position (laying on your stomach, which can reduce the amount of radiation to surrounding tissues). I went to a dedicated cancer center and received 5 treatments in the prone position over a 2 week period (mine was stage 1a, not sure if 1c would change the radiation plan). The radiologist said that some centers give the treatments on 5 consecutive days, but they found that going to every other day often reduces the side effects. I don’t have EDS, but due to an allergic reaction to an antibiotic that caused my skin to blister & peel, my skin is very sensitive. About 3 days after my last treatment I had some redness/rash/itching/peeling that lasted 10 days.

It sounds like you have a good grasp on your conditions, so I will just say, keep asking questions of your care team so you can make informed choices.

I forgot to add the question I wish I would have asked from the start of my diagnosis!

Are you aware of other treatments or protocols that may be offered by other providers or other facilities?

This question seemed to have my doctors slow down and take my questions more seriously. They are not bad doctors, they were just not used to dealing with a well informed patient, and the question led to some productive conversations.

Excellent question. Thank you!

I appreciate the way that you frame the good spirits and you are right..I have really worked at it from mostly a spiritual perspective since living with debilitating pain. Thank you for the reminder ❤️

Thank you @1ek. Really appreciate that you worked to find the best facility and treatment plan! I will be asking my Rad Onc about this on the 11th when I see him for the first time. If we don't ask, we'll never give them the opportunity to assure that we are treated with the best possible outcomes. May I ask, was this in a large city? Thank you again.

I am in the Indianapolis area.
I found that research/teaching facilities seem to offer more options, and I’ve learned that not every facility within the same hospital system offers the same options … it depends on what is available at their facility.
Completely agree, asking questions gives providers the opportunity to make treatment plans that offer the best outcome & are in line with our personal risk/benefit tolerance.
I hope your appointment on the 11th goes well & your questions are answered.

Hi Miriam
I hope this may be of interest to you. In discussing my case, my 3 oncologists believe that my baseline non-cancer pain is undertreated, so because I now have a cancer diagnosis, they have made a referral to Palliative Care for me. I have been concerned that I will not be able to complete my cancer treatments because of the increased pain and I'm sure that the docs are as well. I am very hopeful and excited about this. I wonder if this would be possible for you as well? My next step was to follow your advice about a rehab doctor but this happened before I could contact one. My evaluation for Palliative is May 1st.