1. < Breast Cancer

Is it just me, or do others suffer with no help too?

Posted by blondin925 @blondin925, Dec 6 12:22am

I have completed 5yrs of exemestane tx and have been in pain everyday from it for almost the whole time. Why are Oncologist denying that I am in pain from my treatment, and denying that it can cause very severe neuropathy pain for a small number of people who had the therapy. Is there anyone else out there living with this severe pain like me? I want to cut my legs off daily. Please share your pain. Maybe a doctor somewhere out there might give a crap for once and step out of denial. This is not a figment of my imagination, and it certainly isn't arthritis. I hope all the Oncologist that deny this is happening to patients end up with having to go through this treatment themselves some day and I hope their pain is 10x's worse than my pain scale of 10 that I am living with daily. Oh wait... "it's a figment of my imagination." Never mind.... Idiots!!!!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

blondin925 | @blondin925 | Dec 6 3:12pm
In reply to @mir123 "I've found it sometimes can be difficult to get help with pain that occurred from treatment..." + (show)
@mir123

I've found it sometimes can be difficult to get help with pain that occurred from treatment such as surgery. Perhaps doctors don't want to feel they've caused harm. They often don't want to deal with it. My best experiences treating my chronic pain of 50 years was to go outside of the initial medical situation.
I went to a rehabilitation specialist (MD) who helped me immensely. She referred me to to a rolpher who has worked on me now for 20 years. The rolpher got me into different kinds of PT (my PCP was supportive with referral). I'm not suggesting these things specifically, as my pain is odd and unusual. The rehab doctor said something wonderful: I don't know exactly what is causing your pain but I think I know some things that will help.
I think in your case I'd go straight to palliative care associated with hospital/cancer center where you were treated. They should prescribe for pain management, and meet with you in an ongoing manner. Some centers offer therapy and chaplains if you feeling talking it out will give you some support. In my experience pain clinics can be a bit programatic--I'd get palliative care first and then go on from there. It was hard for me to accept that essentially I was on my own in terms of having to deal with the pain. I regret that I spent my 30s and 40s without asking for support. I know it sounds difficult to have to deal with this--so I hope you find at least one supportive practitioner who can help you make a plan.

Jump to this post

I'm hoping the same. Thank you. Gotta keep trying. 5 years of complaining of pain, I can keep going. Perseverance.

REPLY
1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Dec 6 4:38pm
In reply to @blondin925 "I'm hoping the same. Thank you. Gotta keep trying. 5 years of complaining of pain, I..." + (show)
@blondin925

I'm hoping the same. Thank you. Gotta keep trying. 5 years of complaining of pain, I can keep going. Perseverance.

Jump to this post

My heart goes with you!

REPLY
pml | @pml | Dec 6 8:34pm

Hi Blondin,
I'm so sorry that you are experiencing such pain and have been for so long! That's awful! I don't understand the oncologists having that sort of attitude! That's just wrong. I would suggest that you do research online of your therapy that you had and/or any medications connected with it. Try and find documentation that the pain you are experiencing does come from that, such as side effects of the medication/treatment etc. Print out the information you find and take it to your next oncologist appointment. Maybe they will start to listen to you if you have written proof that what you experienced is real.

Years ago, my mother was experiencing bad side effects to a medication but the doctor said that the medication didn't cause those side effects. However, every time she took that medication, she had these awful side effects. Also it was a medication that was necessary to her condition. She had pulmonary emphysema. This was long before computers. I read the small print paper put in with the medication and it stated that a small amount of people have those side effects. We showed it to the doctor and he stopped her medication and put her on another that had no side effects. Perhaps this can happen for you also.

The other thing that you could do and maybe already are doing is pray a lot! God is there for you and he will answer your prayers. Just talk to him like he's your best friend and he is! After all, he made you and he can fix you!

I'll remember you in my prayers. I wish you the best.
PML

REPLY
1 reply
gigipatula | @gigipatula | Dec 6 9:42pm

Not sure I would trust a Dr. that does not take my side affects seriously. All drugs have side affects and when I read the list of side affects of all the AI's I chose to simply take my chances and skip using them all together. They did not offer me enough risk reduction to warrant taking a risk of the side affects, particularly bone loss, joint and bone pain, mood swings, the list goes on and on.

REPLY
blondin925 | @blondin925 | Dec 7 10:08am
In reply to @pml "Hi Blondin, I'm so sorry that you are experiencing such pain and have been for so..." + (show)
@pml

Hi Blondin,
I'm so sorry that you are experiencing such pain and have been for so long! That's awful! I don't understand the oncologists having that sort of attitude! That's just wrong. I would suggest that you do research online of your therapy that you had and/or any medications connected with it. Try and find documentation that the pain you are experiencing does come from that, such as side effects of the medication/treatment etc. Print out the information you find and take it to your next oncologist appointment. Maybe they will start to listen to you if you have written proof that what you experienced is real.

Years ago, my mother was experiencing bad side effects to a medication but the doctor said that the medication didn't cause those side effects. However, every time she took that medication, she had these awful side effects. Also it was a medication that was necessary to her condition. She had pulmonary emphysema. This was long before computers. I read the small print paper put in with the medication and it stated that a small amount of people have those side effects. We showed it to the doctor and he stopped her medication and put her on another that had no side effects. Perhaps this can happen for you also.

The other thing that you could do and maybe already are doing is pray a lot! God is there for you and he will answer your prayers. Just talk to him like he's your best friend and he is! After all, he made you and he can fix you!

I'll remember you in my prayers. I wish you the best.
PML

Jump to this post

Thank you for your story and advice. Been praying, will continue

REPLY
brightside21 | @brightside21 | Dec 7 3:08pm

I've had exactly the same issues. But It was acknowledged that Femara is the cause.
Asking for help I was dismissed & told its my choice take them or risk recurrance if I don't.
Its the usual answer from all the oncologists. I was told by 3 oncologist "I can NOT advise you stopping AIs."
I've asked repeatedly what can be done to stop or reverse the imense femur bone pain in both legs that's being caused by Femara (Letrozole) & what are my alternatives to stopping..Can they stop.my deuteriation.? I'm.on high dose calcuim & vit d already. They seem unconcerned with my pain saying take MST morphine !! .

One oncologist in London uk
said try Tamoxifen 5mg or 10mg ( as its known to be less invasive on bones & pain)
20mg is the standard daily dose
Another oncologist said at a uk.hospital we do not prescribe low doses at our hospital.its unrecognised.
Another said just STOP all AIs & take the risk & enjoy a better quality of life.
Basically oncology do not have a medication that does not cause joint pain, bone pain & muscle pain so those of us who suffer this it's a total nightmare.
Like you I've seen orthopedic consultants as well as rhematogy consultants. Both confirmed my arthritus & fibromyagia is NOT causing this bone density loss& pain & both confirmed it's definately the AIs.
I've tried Tamoxifen
Anastrrzole, Examastane Letrozole & Anastrazole. All gave me severe pain issues.
We need a new medication & more research asap.

REPLY
2 replies
blondin925 | @blondin925 | Dec 7 8:26pm
In reply to @brightside21 "I've had exactly the same issues. But It was acknowledged that Femara is the cause. Asking..." + (show)
@brightside21

I've had exactly the same issues. But It was acknowledged that Femara is the cause.
Asking for help I was dismissed & told its my choice take them or risk recurrance if I don't.
Its the usual answer from all the oncologists. I was told by 3 oncologist "I can NOT advise you stopping AIs."
I've asked repeatedly what can be done to stop or reverse the imense femur bone pain in both legs that's being caused by Femara (Letrozole) & what are my alternatives to stopping..Can they stop.my deuteriation.? I'm.on high dose calcuim & vit d already. They seem unconcerned with my pain saying take MST morphine !! .

One oncologist in London uk
said try Tamoxifen 5mg or 10mg ( as its known to be less invasive on bones & pain)
20mg is the standard daily dose
Another oncologist said at a uk.hospital we do not prescribe low doses at our hospital.its unrecognised.
Another said just STOP all AIs & take the risk & enjoy a better quality of life.
Basically oncology do not have a medication that does not cause joint pain, bone pain & muscle pain so those of us who suffer this it's a total nightmare.
Like you I've seen orthopedic consultants as well as rhematogy consultants. Both confirmed my arthritus & fibromyagia is NOT causing this bone density loss& pain & both confirmed it's definately the AIs.
I've tried Tamoxifen
Anastrrzole, Examastane Letrozole & Anastrazole. All gave me severe pain issues.
We need a new medication & more research asap.

Jump to this post

Tamoxifen caused uterine cancer cells for me as I was at high risk, come to find out. I took that for 6 months. I ended up having to have a D&C for two years in a row, every march. By the third year when they said I need another D&C, I felt like I had no choice but have a total hysterectomy. Was a nightmare

REPLY
1 reply
carrot47 | @carrot47 | Dec 8 12:48pm

I am so sorry you have had this real misery. I am stopped 2 inhibitors and am on Tamoxifen ,which is bearable, with side effects, but now I can walk and not vomit or have stomach pains.. I have other post mastectomy issues 2 years later.
But, getting support helps. You are not alone in your struggles. We need a support group for people who have less quality of life and are not being heard.

REPLY
cw2024 | @cw2024 | Dec 8 11:55pm
In reply to @blondin925 "Tamoxifen caused uterine cancer cells for me as I was at high risk, come to find..." + (show)
@blondin925

Tamoxifen caused uterine cancer cells for me as I was at high risk, come to find out. I took that for 6 months. I ended up having to have a D&C for two years in a row, every march. By the third year when they said I need another D&C, I felt like I had no choice but have a total hysterectomy. Was a nightmare

Jump to this post

During my second month of radiation my OB gynecologist advised me to have a total hysterectomy because during a transvaginal ultrasound my uterine lining showed thickening ( hyperplasia) the 3rd one in a couple of years.

REPLY
melissab23 | @melissab23 | Dec 9 4:51am

I have been in pain daily since surgery over a year ago. I feel like a hot potato with docs passing me off to the next guy because no one wants to or is capable of helping me. And the palliative care docs were only interested in getting me started on mental health drugs, not trying to find the root of the pain. I'm not even 50 yet.

Plus, my oncologist is making me switch from Tamoxifen to an AI because my lab work shows I'm post-menopausal now. (He refused to retest hormone levels after taking a 2 week tamoxifen break).
I'm so scared of the side effects of bone loss, muscle, and joint pain (among others). He chose anastrazole because it's the oldest one, but said he'd prescribe any of the 3. I have to let him know in 4 days.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.