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Topic: pain shaming by palliative care team?

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Dec 4, 2020 01:16PM

fredntan wrote:

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.

MBC bone mets since 2013 Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Dec 4, 2020 05:26PM flashlight wrote:

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.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Dec 7, 2020 10:24PM fredntan wrote:

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.


MBC bone mets since 2013 Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Dec 13, 2020 12:35PM DivineMrsM wrote:

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!


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Dec 18, 2020 09:29AM fredntan wrote:

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!

MBC bone mets since 2013 Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Feb 7, 2021 11:06PM lekker wrote:

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.

Colorectal carcinoma in situ January 2000 (age 30), and now this... Dx 7/2012, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/6/2012 Lumpectomy: Right Surgery 10/3/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/12/2013 Reconstruction (left); Reconstruction (right) Surgery 4/11/2013 Prophylactic ovary removal
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Feb 8, 2021 07:57AM Help2021 wrote:

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

Jennifer Snoderly
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Sep 21, 2021 05:17PM fredntan wrote:

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...

MBC bone mets since 2013 Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Sep 21, 2021 06:31PM - edited Sep 21, 2021 06:32PM by 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.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Sep 21, 2021 06:38PM - edited Sep 21, 2021 06:39PM by 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


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 21, 2021 07:55PM - edited Sep 21, 2021 08:03PM by 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?

MBC bone mets since 2013 Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy

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