Pain regimen

Help2021

• I was diagnosed in June 2020 with triple negative metastatic breast cancer stage 4. My husband came home from work one day and took one of my oxymorphone not thinking. I had a confidential conversation with my palliative doctor letting him know this so as to not break my pain contract with them and in return fir the confidential advice he took me off all my pain meds completely. I have had to go through all the chemo. The surgery. And radiation. With absolutely nothing for pain but Tylenol. And the only thing they keep insisting is I'm there to seek pills because I'm an addict. This is not the case. I need help. No one Weill help me with my management. Ruby memorials doctors abandoned me during my care there. They stopped communicating with me all together. Refused to see me at times. So I left and I won't go back. I almost finished m radiation. It was too painful. Can anyone hel

moth

hi help, sorry you find yourself dealing with this diagnosis and your pain. I'm unclear who is managing your care? Do you have a medical oncologist that is supervising your care?

What treatment are you receiving now? Where are your mets? We might be able to offer info and ideas.

Help2021

as of right this second, I do not officially have an oncologist. I had a full team when I was receiving chemo at WVU Ruby Memorial Cancer Center in Morgantown WV. Salkeni was my oncologist. He was nice enough in the beginning. He got frustrated rather quickly with me. The whole staff seemed to. You see I have a traumatic brain injury and while I can communicate well. I have a difficult time processing.
I asked a lot of questions repeatedly so that I could understand. I got cancer at ther fect time. With Covid no one could go in with me to soak up what was happening to me. Another tag along with the tbi is I get overly emotional and since cancer, it’s multiplied 10x and there’s no off switch. They didn’t like that. At all. I was automatically suicidal because there was an attempt a few years ago when I was at a bad spot. I got help and treatment, I’m good. I even had both my psych doctors offer to send them an evaluation on me stating just that.

Anyway. Sorry I ramble.

I had three or four visits left of radiation before I was done. By that time I lost all faith in that facilities ability to treat me as an individual dying cancer patient instead of just a statistical addict (their assumption, not so)

I am sort of in communications now with an oncologist I see through a telehealth program. She’s a va doctor from Durham. When I was first introduced to this staff I was optimistic because they genuinely sounded as if they gave a damn. I was promised a call back several times so that we could figure something out. I never got those calls.

They want me to get more chemo. That I’m not doing.

moth

help, it sounds very complicated and challenging to deal with when you have many other health problems.

Can you tell us your diagnosis and where your mets are? Chemo is often standard of care depending on location of mets and aggressiveness of your cancer.

Help2021

I don’t know what u mean by met. Not to up on the cancer lingo I suppose. Or it could be that my team left me out in the dar a lot as opposed to actually explaining to someone with a bad tbi. Umm. I’ll try my best here. Stage 4 triple negative metastatic breast cancer involving left breast, left nodes and (might) include lungs. They are unsure. Smh

They did very little testing on the lungs. Only thing said to me was the nodes were to small to biopsy in the lungs. They said I would get another test on my lungs after the surgery and we would take it from there ..... my surgery was October 23rd. With no contact what so ever. I asked about scans and they said they weren’t going to worry about until they hafta worry about it. 👀

Help2021

oh. Hope this helps as far as aggressiveness.

I first felt a lump maybe the size of a small marble in late February 2020. Covid hit right then so screw going out right. In may i had my first scan and it was the size of a soft ball

jhl

Hi Help,

Can you clarify why you were receiving oxycodone & in a pain management practice? Most of us have our surgery, chemotherapy & radiation and use nothing more than Tylenol for discomfort. Do you have another concurrent diagnosis? At this point, I think you might be stuck.Your pain management physician has a tremendous liability once learning of your husband's access to you oxycodone resulting in your discharge from his practice. It sounds as though you might have difficulty being able to maintain a longitudinal patient doctor relationship. Withdrawing from narcotics makes this even more difficult. My suggestion is to seek an appointment with one of your psychiatrists to work on your emotional impulsivity and narcotic withdrawal so you are able to maintain a connection with an oncology practice.

Best of luck,

Jane

moth

Have you tried getting your copies of medical records? If it's easier to read than process spoken word, you should definitely get them.

Your pathology reports should list the grade of the tumor. Grade is how we measure aggressiveness.

The reason I'm asking is that a stage 4 diagnosis means it is metastatic. Mets are metastases (spread) to distant organs. For triple negative, chemo is absolutely required. There are some new immunotherapies also but they're combined with chemo.

Stage 4 cancer is terminal and requires ongoing treatment for the rest of your life. Again for triple negative, treatment is chemo &/or immunotherapy. Of course you can refuse treatment but then they would refer you to hospice.

If the lung nodules are not mets, you might not be stage 4. Spread to only lymph nodes is NOT stage 4 cancer. many people have benign lung nodules which have nothing to do with the cancer so if this is what your drs now think, then you're not stage 4.

I really recommend you contact the records department where you've been treated and get copies of your reports so you can really get these details.

I was diagnosed with mets in Feb 20, just before covid too so I know it's made things more difficult but we just need to persevere.

Help2021

well. Right from the get go after my biopsy, I was in all kinds of pain. I describe it as when you got tossed in the air as a small child and the catchers hand slips and his thumb digs into it under arm. The hard strong pain all the time. The whole time. I still feel it now post op. The chemo was difficult on me as well. It bottomed out ALL my numbers which lead to transfusions instead of chemo. Now I was in contact with Hopkins and the American cancer society and my issue and they were astounded by how I was being treated. Also never heard of cancer patient not receiving anything for pain. And I frankly believe that. My bones hurt from the shot I gave myself after chemo. Still they hurt. I am a pussy I suppose. I also suffer from excruciating chronic pain from a car accident. It’s all good. I appreciate everyone’s feed bac

Help2021

to keep the connection I would first need communication to exist in the first place. I tried my best to communicate what I could. They blew me off because I kept asking them to clarify things. And then when my pain got worse and I asked for help, they just faded away the rest of the way ceasing communications all together. Calls didn’t get retuned. Messages not answered. I gave up. They wanna give up on my quality of care, that doesn’t work for me

moth

some chemo can cause muscle and bone pain as well as neuropathic pain. Mine is currently treated with gabapentin and when i need more, Advil. I avoid Tylenol if I can because i have mets in my liver.

cancer pts get opioids at end of life but from what I see of metastatic pts, usually opioids can be avoided in other treatment phases.

Still am wondering about your diagnosis.

I don't know if we can help you much though there are some non pharmaceutical interventions - magnesium baths for muscle aches, exercise, heated blankets etc for various types of pain we experience.

exbrnxgrl

jennifer,

Many, many, many cancer patients don’t take pain meds, so it is not astounding that you’re having some trouble getting them. I know what your husband did was accidental, but you are probably aware of how tightly pain meds are being controlled at this time. It sounds as if your pain issues may extend beyond anything related to breast cancer. It also sounds as if your tbi has caused some communications problems for you in your relationships with doctors. Can you look into starting fresh with a new onc and help him/her understand limitations you may have due to the tbi? Under the circumstances, could you ask to have someone be allowed to accompany you to help you process things better? Barring that, most doctors will not mind if you record the visit. This way you can listen at your leisure and process the info. And, you should have someone listen with you as well. No doctor should blow a patient off because they ask for clarification, tbi or not! Pain issues not resulting from cancer are outside the oncologist’s purview but once you have an onc, that person can help you manage any cancer related pain.The world is funny, isn’t it? Every time I have surgeries or procedures that result in prescription pain med scripts, I usually take one or two and drop the rest off at the pharmacy that accepts leftover meds. I am having surgery Friday and will do the very same thing!

candy-678

Help- Moth has given you really good advise. I would add-- do you have someone that can go with you to your appointments to help you understand the medical stuff. Your husband. Or another family member that knows about your disability and how you communicate and understand the best. I know Covid has limited the visitors that can be with the patient, but if you explain the brain injury and that you need someone with you to understand and ask questions they should help make that happen-- in person or thru telehealth visits (phone or thru computer).

First, I think you need to find out the specifics on IF you are Stage 4. It sounds like you had some radiation treatments left and they want you to do some chemo now?? If you need further chemo, then you should have an oncologist that is handling the chemo. The lung has not been confirmed as cancer?? Have you had a PET scan that said there was cancer elsewhere? If the cancer is confined to the breast, or even some lymph nodes, then you are not Stage 4. I think that is the most pressing question right now. What Stage are you and what treatment do they want to do next.

As far as pain meds, I have found most doctors want to only use pain meds sparingly. They want to try other things-- physical therapy, over the counter meds, etc. You said you have a palliative care doctor, for other health issues? Maybe they can help with your other pain issues with your other health issues---you said you have chronic pain from a car accident. But, as far as cancer goes, pain meds are not routinely prescribed for us. I was told by my oncologist to use Tylenol, and my cancer is in the bones and liver.

I do hope you find some peace with your cancer. And answers to your questions. With radiation and chemo, you may have a good outlook and live many more years cancer free.

Tinkerbell107

Help: Just wanted to offer support for it must be challenging having a TBI and now Metastatic Breast Cancer. In the medical facility where I am employed, quite frequently patients utilize a Nurse Navigator or an Oncology Social Worker., to help guide decisions (listening to the patients needs and connecting to appropriate resources/referrals, such as pain management.). I hope you can find an "advocate" to help reduce distress.

Help2021

I would love to be able to take more than just Tylenol. I am allergic to gabapentin. Causes blindness. Aspirin and ibuprofen causes horrible stomach cramps. I only have the tyleno