pain shaming by palliative care team?

fredntan

I am going into my 8th year with MBC. I have a local pain doctor that I can get meds for pain. But am wondering if anyone else has experienced what I have with my palliative care team? I saw the lead doc over a year ago. Dr Terauchi at UTSW . she was visibly irritated I was asking to have my pain treated. she tried to make me feel bad because I do not want to live in pain. saw the other doc there Dr Hutchinson I am needing someone to take over my xanax script. he is having me see a psychiatrist. okay. he also shamed me for needing pain meds. good grief! I sent a letter to his bosses/ my ceo's at the hospital. I used to be nurse before I became a full time patient. Blows me away how some docs treat us now.

flashlight

Hi fredntan, I am sorry this is happening to you. I am a retired nurse as well. I think the hospital based doctors have to now follow a medication protocol that doesn't take in account the client's pain scale. Is there anywhere else you could go? Best wishes.

fredntan

I have a pain doctor I see monthly. It just gets tiring going to all my doctors monthly. Was hoping to eliminate some doctor visits

Palliative care from what I understood is every 3 months.

I just found there attitude annoying.

DivineMrsM

It sounds very unprofessional for a palliative doctor to shame you about having pain and wanting to be treated for it. I'm assuming the letter you wrote to the bosses and ceo are complaints about this behavior, and if so, good for you! Sometimes it seems doctors discriminate against women, trivializing or ignoring their complaints. That should not be, especially when someone is dealing with a disease like mbc! This may be something you have to be persistent about until you get the treatment you seek to alleviate your pain. And hopefully the psychiatrist would be able to give you a 12 month prescription or at least 6 months. I can understand how monthly doctor visits become tiring!

fredntan

No the psychiatrist is monthly

The pain doctor is monthly

Oncology is monthly

The pain doc and psychiatrist do not have the easy way to communicate. So if I need anything. I have to play phone tag and wait for nurse to call back.

The hosp wrote back. They reviewed my chart. It said it was recommended I take a drug Celebrex for my arthritis pain. ( I am on a blood thinner...this drug is contraindicated)

I looked at the side affects. Stroke...I got osteonecrosis of the jaw from xgeva. Side affects are real.

What ever happened to a doctor listening to a patient. This has been so infuriating! I am a nurse living with MBC! I was short of breathe for years...they all said I had anxiety. A VQ scan showed I had scattered clots in my lungs.

Thanks for letting me vent!

lekker

I’m sorry to hear you’re having such trouble being treated properly for your pain. The US got into the deadly opioid crisis we are in today because doctors over prescribed opioid pain medications for things they were not originally developed to treat - toothache, knee surgery, chronic back pain, etc. But do you know what those medications were originally developed for? That’s right, cancer pain. It is unconscionable that you have stage 4 cancer and are being given a hard time. You wrote that you’re on year 8 of being metastatic - congratulations! And I hope that your doctors will be compassionate and willing to give you whatever medications that help your quality of life. It’s what those painkillers were designed to do after all.

Help2021

can I ask your outcome? My palliative team did the identical to me. Refused to give me anything for pain. At all. I’m still struggling with nothing for comfort

fredntan

The palliative care team is not a option anymore for me. I sent a complaint in to the CEO of UTSW. They "reviewed " my chart. they sent me a letter saying I could use motrin for pain. I can't because they did not see that I am on blood thinners. I am not allowed to use UTSW palliative care anymore. I was only going there to see if they could help with my then shortness of breath? I found a good pain doctor. I must go monthly. they check my urine to make sure I dont drink or do drugs? okay fine. Share Metastatic has a palliative care doc coming to talk soon. I emailed them to ask if this is normal? I gave the doctors name... Dr Stephanie Terauchi. She cant read a patient chart. I will message you...the girl from WV. We are stronger together

Share Metastatic is having a palliative care doc do a talk. I emailed exactly what happened. I asked if pain was not individual? And how do these young new docs not be able to understand real pain?

https://www.sharecancersupport.org/metastatic-brea...

Miriandra

Docs are gun-shy to prescribe pain meds because of backlash from opioid abuse. But there's also a long history of doctors dismissing and disbelieving women when they complain of pain. We almost lost Serena Williams to blood clots after she gave birth to her daughter, because her medical care team didn't believe her complaints of symptoms.

Why Don't Doctors Take Women's Pain Seriously?

I hope your next team actually listens to you and gives you the care you need.

Moderators

Wow, fredntan, that doesn't seem fair at al all to youl. Can we help in any way? Please send a PM!

Also, we hope you learn from the palliative talk. We have quite a bit as well, so please reach out.

https://www.breastcancer.org/research-news/guideli...

https://www.breastcancer.org/symptoms/types/recur_...

Warmly,

The Mods

fredntan

I sent a long PM! I am a RN living with this dang MBC. I am certain this nurse in me has helped me jump through all these issues. This initial episode happened in april 2019. But I am no longer allowed to use UTSW palliative care? I have not been rude at all?