1. < Breast Cancer

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

Posted by blondin925 @blondin925, Dec 6, 2024

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.

sue417 | @sue417 | Dec 18, 2024
In reply to @lisay1 "It's a scary decision. I have Rheumatoid Arthritis which is very painful. I could take an..." + (show)
@lisay1

It's a scary decision. I have Rheumatoid Arthritis which is very painful. I could take an injectable which I did for years. Now I'm worried about reoccuring cancer and do nothing to help with the Rheumatoid Arthritis. My surgeon said it's about the quality of life decision. I'm not trying to fight the RA but not so sure .......... I want to fight cancer again

Jump to this post

Hi
That's tough for sure. Ra is brutal. You can't take your RA meds if you do AI ? I am confused

REPLY
1 reply
LisaY1 | @lisay1 | Dec 18, 2024
In reply to @sue417 "Hi That's tough for sure. Ra is brutal. You can't take your RA meds if you..." + (show)
@sue417

Hi
That's tough for sure. Ra is brutal. You can't take your RA meds if you do AI ? I am confused

Jump to this post

Sorry for the confusion. I can take the RA medicine (Humira) but I'm afraid because it increases your risk of cancer. I had breast cancer that had traveled into my lymph nodes. I've been cancer free for three years but I'm worried about resuming the biologic medication.

Thank you for your interest. Best wishes.🦋

REPLY
1 reply
sue417 | @sue417 | Dec 19, 2024
In reply to @lisay1 "Sorry for the confusion. I can take the RA medicine (Humira) but I'm afraid because it..." + (show)
@lisay1

Sorry for the confusion. I can take the RA medicine (Humira) but I'm afraid because it increases your risk of cancer. I had breast cancer that had traveled into my lymph nodes. I've been cancer free for three years but I'm worried about resuming the biologic medication.

Thank you for your interest. Best wishes.🦋

Jump to this post

Hi
I hope your physicians find a solution that works for you and you get some relief.

REPLY
LisaY1 | @lisay1 | Dec 19, 2024

Thanks so much Sue! I do as well.

Take care 🙂

REPLY
mcaj | @mcaj | Jan 1 6:23pm
In reply to @blondin925 "I was started on arimidex and the pain was so bad they put me on exemestane...." + (show)
@blondin925

I was started on arimidex and the pain was so bad they put me on exemestane. The exemestane was still pain inducing but the lesser of 2 evils. I am only 55yrs old. I am told not everyone has these side effects, they should be temporary and subside for most patients ending their treatment, but for a small percentage I guess, suffering is the new normal. I don't want to scare people from taking the treatment. We got to do it, I just want doctors to listen to the real world effects from the patients that do end up suffering. Please try not to be worried. Take the med and go from there. Be your own best advocate.

Jump to this post

Listen to your body. If anything, document what is happening to your body.

REPLY
clh71 | @clh71 | Jan 2 6:17am

I hear you! I had malignant Lobular carcinoma last January. Surgery in February. Lumpectomy with Lymph node removal. I have had Lymphedema this past entire year. Have constant pain and can barely use the right arm without pain. The last ultrasound showed structural damage, scar tissue, seroma. No cancer. Does it ever end?

REPLY
2 replies
lifetraveler | @lifetraveler | Jan 2 7:38am
In reply to @clh71 "I hear you! I had malignant Lobular carcinoma last January. Surgery in February. Lumpectomy with Lymph..." + (show)
@clh71

I hear you! I had malignant Lobular carcinoma last January. Surgery in February. Lumpectomy with Lymph node removal. I have had Lymphedema this past entire year. Have constant pain and can barely use the right arm without pain. The last ultrasound showed structural damage, scar tissue, seroma. No cancer. Does it ever end?

Jump to this post

Hi! @clh71 :

I am so sorry for your suffering through last year and wish to reduce your pain somehow...

Have you tried physical therapy/occupational therapy to resolve these painful issues yet? They helped me tremendously to reduce my own pains. My wonderful PCP recommended me to the "Cancer Patients' rehab program" that has been run by a local hospital and helped me back to a "normal life", not pain-free completely but managable.

Wishing you all a healthier, happier, peaceful and very blessed new year of 2025!

REPLY
1 reply
maggieb892 | @maggieb892 | Jan 2 9:48am
In reply to @clh71 "I hear you! I had malignant Lobular carcinoma last January. Surgery in February. Lumpectomy with Lymph..." + (show)
@clh71

I hear you! I had malignant Lobular carcinoma last January. Surgery in February. Lumpectomy with Lymph node removal. I have had Lymphedema this past entire year. Have constant pain and can barely use the right arm without pain. The last ultrasound showed structural damage, scar tissue, seroma. No cancer. Does it ever end?

Jump to this post

A year is a long time to be suffering without some help. I did not have a seroma but I did (do) have lymphadema and scar tissue. I saw an OT specializing in lymphedema. She was able to break up the scar tissue and with lots of exercising and massage, we were able to reduce the fluid in my breast and underarm. This was not quick or easy, but well worth the time it takes to improve. I have daily stretching exercises to do every day! It takes less than 5 minutes to do them. I hope you can find a lymphadema specialist to help you

REPLY
clh71 | @clh71 | Jan 3 6:11am
In reply to @lifetraveler "Hi! @clh71 : I am so sorry for your suffering through last year and wish to..." + (show)
@lifetraveler

Hi! @clh71 :

I am so sorry for your suffering through last year and wish to reduce your pain somehow...

Have you tried physical therapy/occupational therapy to resolve these painful issues yet? They helped me tremendously to reduce my own pains. My wonderful PCP recommended me to the "Cancer Patients' rehab program" that has been run by a local hospital and helped me back to a "normal life", not pain-free completely but managable.

Wishing you all a healthier, happier, peaceful and very blessed new year of 2025!

Jump to this post

Unfortunately, I think my surgeon missed a few steps. He did not drain my breast after surgery.
And, although it did drain a lot on its own, I feel strongly that if he had put a drain in, I might have done better. And neither the cancer dr. nor the surgeon referred me out for help with Lymphedema, My PCP found me someone to help. But that was 6 months later. Mammogram and Ultrasound show no cancer, but abnormal structure from treatments. Whatever that means.

REPLY
kimogi57 | @kimogi57 | Jan 5 12:23pm

I am so sorry you went through this. My onco changed me from Anestrozole to Exmestame the first year after my surgery. It made the pain and brain fog worse. Since my ILC was found early she agreed I should stop taking it. I hope we both made the right decision. It was about my quality of life vs slow growing ILC for me. I also had both breasts removed after an initial lumpectomy. I had a family history of breast cancer and dense fibrous breasts. I hope you find some relief soon. 🫂

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