Conflicted on taking medication

Posted by rabab101 @rabab101, Fri, Oct 11 8:34am

I was diagnosed with stage 2 breast cancer, grade 1
I didn’t need chemo or radiation. My oncologist informed me that I have to be on tamoxifen to reduce chances of recurrence. I was miserable.
I quit taking it after two weeks.
I’ve been a health but most of my life and have never been a pill popper.
Extremely conflicted about taking my chances without medication.
Can anyone offer me insight on how they feel about it? Please help me decide what to do. Feel free to speak your mind, respectfully of course:-)

It is a very difficult decision between quality of life and chance of recurrence of cancer.

I suggest you have an discussion with oncologist about pros and cons of medication and options. If oncologist is not willing to discuss options, maybe time to find new dr.

The first drug my oncologist put be on gave me terrible side effects, but I stayed on for 6 months because did not think there were options. I stopped taking prior to surgery and felt better within days. After surgery I told my oncologist I would not take again. He reviewed the percent of recurrence with and without drugs. I agreed to try a different hormone suppression drug, and the side effects are less.

Wish you the best

Laurie

REPLY

I also had a stage 2 cancer but did have one sentinel node involved. I have tried anastrozole. My side effects were not pleasant with joint pain and cognitive function issues. Anastrozole caused me some pretty severe memory problems to the point that I thought I was sliding into dementia. Then my oncologist switched me to Tomoxifin, the joint pain was better, but I still experienced brain fog. My oncologist has been wonderful through this whole process, and recently changed my meds again to Exemestane. I’ve been on that for a little over two weeks and so far, so good!!! It seems that all of the breast cancer medications have some potential side effects. Do some research on each of them. There is a LOT of information available with just a google search. If I had an alternative choice with the same reduction in recurrence, I wouldn’t take ANY of the meds!!! My Ob/gyn found the lump in my breast during routine annual exam, and referred me for a biopsy. The biopsy revealed cancerous cells. I was diagnosed as stage 2 following surgery as a sentinel lymph node was involved. I then sought out the very best oncologist I could find in my area. I am very open and honest with her about my feelings, side effects, etc. She is the expert, has made oncology her life’s work, and I feel I need to listen to her expertise. Communication with your oncologist is KEY to a healthy recovery and ongoing management of this dreaded disease. Until cure is found, we must be willing to put up with the best effort and judgement available to us by our oncologists. Also, there is nothing at all wrong with seeking out another oncologist if you are unable to communicate well with your current physician. Your best care is a team effort between you your oncologist, and their staff. Good luck to you!

REPLY
@lisman1408

I also had a stage 2 cancer but did have one sentinel node involved. I have tried anastrozole. My side effects were not pleasant with joint pain and cognitive function issues. Anastrozole caused me some pretty severe memory problems to the point that I thought I was sliding into dementia. Then my oncologist switched me to Tomoxifin, the joint pain was better, but I still experienced brain fog. My oncologist has been wonderful through this whole process, and recently changed my meds again to Exemestane. I’ve been on that for a little over two weeks and so far, so good!!! It seems that all of the breast cancer medications have some potential side effects. Do some research on each of them. There is a LOT of information available with just a google search. If I had an alternative choice with the same reduction in recurrence, I wouldn’t take ANY of the meds!!! My Ob/gyn found the lump in my breast during routine annual exam, and referred me for a biopsy. The biopsy revealed cancerous cells. I was diagnosed as stage 2 following surgery as a sentinel lymph node was involved. I then sought out the very best oncologist I could find in my area. I am very open and honest with her about my feelings, side effects, etc. She is the expert, has made oncology her life’s work, and I feel I need to listen to her expertise. Communication with your oncologist is KEY to a healthy recovery and ongoing management of this dreaded disease. Until cure is found, we must be willing to put up with the best effort and judgement available to us by our oncologists. Also, there is nothing at all wrong with seeking out another oncologist if you are unable to communicate well with your current physician. Your best care is a team effort between you your oncologist, and their staff. Good luck to you!

Jump to this post

@lisman1408 I'm going on exemestane now for about a month. Bone pain doesn't seem as bad as on the other two aromatase inhibitors. I have joined a therapeutic water exercise class and go two times a week and finding that is very helpful. Still having fatigue and some weakness, but learning to cope with that.

Liked by lisman1408

REPLY

5 years ago at age 64, I was diagnosed with Stage 1 mutifocal invasive dcis. For that reason, I very unhappily had to have a mastectomy instead of lumpectomy. 2 sentinel lymph nodes were removed and were clear.
Arimidex was strongly suggested to me by one oncologist. I wasn't comfortable hearing about all the side effects. I got a second opinion from one of the top oncologists at the University of Pittsburgh Medical Center. He does extensive research and reading of all the global studies. To make a long story short, he said that all the studies showed little to no difference in survival rates if the cancer were to return in my remaining breast. He said many women choose not to take it for that reason. After much thought, I decided against Arimidex. I obviously am closely monitored, and have been happy with my personal decision. The survival rates were the deciding factor for me.

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@trixie1313

@lisman1408 I'm going on exemestane now for about a month. Bone pain doesn't seem as bad as on the other two aromatase inhibitors. I have joined a therapeutic water exercise class and go two times a week and finding that is very helpful. Still having fatigue and some weakness, but learning to cope with that.

Jump to this post

Anne72, very encouraging that you are doing so well! Thank you for posting your positive success!

Trixie, glad to hear that Exemestane is seemingly better for you! That gives me hope that I’ll do well on it too!

Liked by trixie1313

REPLY
@anne72

5 years ago at age 64, I was diagnosed with Stage 1 mutifocal invasive dcis. For that reason, I very unhappily had to have a mastectomy instead of lumpectomy. 2 sentinel lymph nodes were removed and were clear.
Arimidex was strongly suggested to me by one oncologist. I wasn't comfortable hearing about all the side effects. I got a second opinion from one of the top oncologists at the University of Pittsburgh Medical Center. He does extensive research and reading of all the global studies. To make a long story short, he said that all the studies showed little to no difference in survival rates if the cancer were to return in my remaining breast. He said many women choose not to take it for that reason. After much thought, I decided against Arimidex. I obviously am closely monitored, and have been happy with my personal decision. The survival rates were the deciding factor for me.

Jump to this post

@anne72
From what I understand, there is a difference between recurrence rate and survival rate. At our age, in light of national statistics, our likely demise will be from heart disease. Recurrence rate, on the other hand, is another kettle of fish… that taking an AI helps reduce the risk of breast cancer returning, either in its original setting or in the other breast.

REPLY
@roch

It is a very difficult decision between quality of life and chance of recurrence of cancer.

I suggest you have an discussion with oncologist about pros and cons of medication and options. If oncologist is not willing to discuss options, maybe time to find new dr.

The first drug my oncologist put be on gave me terrible side effects, but I stayed on for 6 months because did not think there were options. I stopped taking prior to surgery and felt better within days. After surgery I told my oncologist I would not take again. He reviewed the percent of recurrence with and without drugs. I agreed to try a different hormone suppression drug, and the side effects are less.

Wish you the best

Laurie

Jump to this post

Thank you Laurie for your response. I am new to this and very grateful that many of you responded. After meeting with my oncologist, whom I like very much, And after further discussion, I decided to go on anastrozole and try it out. I hope it works for me. Thank you again!!!
Rabab

Liked by farmgirl1556

REPLY
@lisman1408

I also had a stage 2 cancer but did have one sentinel node involved. I have tried anastrozole. My side effects were not pleasant with joint pain and cognitive function issues. Anastrozole caused me some pretty severe memory problems to the point that I thought I was sliding into dementia. Then my oncologist switched me to Tomoxifin, the joint pain was better, but I still experienced brain fog. My oncologist has been wonderful through this whole process, and recently changed my meds again to Exemestane. I’ve been on that for a little over two weeks and so far, so good!!! It seems that all of the breast cancer medications have some potential side effects. Do some research on each of them. There is a LOT of information available with just a google search. If I had an alternative choice with the same reduction in recurrence, I wouldn’t take ANY of the meds!!! My Ob/gyn found the lump in my breast during routine annual exam, and referred me for a biopsy. The biopsy revealed cancerous cells. I was diagnosed as stage 2 following surgery as a sentinel lymph node was involved. I then sought out the very best oncologist I could find in my area. I am very open and honest with her about my feelings, side effects, etc. She is the expert, has made oncology her life’s work, and I feel I need to listen to her expertise. Communication with your oncologist is KEY to a healthy recovery and ongoing management of this dreaded disease. Until cure is found, we must be willing to put up with the best effort and judgement available to us by our oncologists. Also, there is nothing at all wrong with seeking out another oncologist if you are unable to communicate well with your current physician. Your best care is a team effort between you your oncologist, and their staff. Good luck to you!

Jump to this post

Super pleased with my oncologist. I am lucky enough to be 3 hours away from Mayo Clinic in Rochester, MN and I like the team that I work with.
I discussed integrative nutrition and he was very open and set me up with a nutritionist as well.
I am so sorry that you’re going through all this. I am new and it’s been very encouraging to see how everyone really cares.
Thank you and good luck to you as well!!!

REPLY
@anne72

5 years ago at age 64, I was diagnosed with Stage 1 mutifocal invasive dcis. For that reason, I very unhappily had to have a mastectomy instead of lumpectomy. 2 sentinel lymph nodes were removed and were clear.
Arimidex was strongly suggested to me by one oncologist. I wasn't comfortable hearing about all the side effects. I got a second opinion from one of the top oncologists at the University of Pittsburgh Medical Center. He does extensive research and reading of all the global studies. To make a long story short, he said that all the studies showed little to no difference in survival rates if the cancer were to return in my remaining breast. He said many women choose not to take it for that reason. After much thought, I decided against Arimidex. I obviously am closely monitored, and have been happy with my personal decision. The survival rates were the deciding factor for me.

Jump to this post

I so badly prefer to NOT take any medication at all. I am worried a bit about all the possible side effects. I’ll give it a shot and see what happens. I still prefer quality of life than the quantity of the worthless years I’ll live.
Thank you for your input

REPLY
@lisman1408

Anne72, very encouraging that you are doing so well! Thank you for posting your positive success!

Trixie, glad to hear that Exemestane is seemingly better for you! That gives me hope that I’ll do well on it too!

Jump to this post

This medication will be my next choice if anastrozole doesn’t work.
Thank you Anne

Liked by lisman1408

REPLY
@roch

It is a very difficult decision between quality of life and chance of recurrence of cancer.

I suggest you have an discussion with oncologist about pros and cons of medication and options. If oncologist is not willing to discuss options, maybe time to find new dr.

The first drug my oncologist put be on gave me terrible side effects, but I stayed on for 6 months because did not think there were options. I stopped taking prior to surgery and felt better within days. After surgery I told my oncologist I would not take again. He reviewed the percent of recurrence with and without drugs. I agreed to try a different hormone suppression drug, and the side effects are less.

Wish you the best

Laurie

Jump to this post

Which drug worked for you?

REPLY
@rabab101

Which drug worked for you?

Jump to this post

I am taking Letrozole,
Laurie

REPLY

It's a tough decision, and one that I struggle with every day. I had invasive mixed ductal and lobular
carcinoma stage 2v, and lobular carcinoma in situ.
I had a double mastectomy with all of the sentinel and axillary lymph nodes removed. I know I have a higher risk of recurrence than you do, but here's my experience – I've been on Arimidex for 4 years and Zoladex for about a year, and it's been a nightmare. I started taking Taurine supplements which greatly reduced the joint pain. 20% of women on the hormone blockers quit taking them due to the side effects. I have no criticism for anyone who chooses to do that! The thing that makes me continue them was watching my grandma die of breast cancer. I don't know if you have an oncology rehabilitation medicine physician, but they might be able to help you manage the side effects. I know it's hard and I'm so sorry you're suffering!

REPLY
@elizm

@anne72
From what I understand, there is a difference between recurrence rate and survival rate. At our age, in light of national statistics, our likely demise will be from heart disease. Recurrence rate, on the other hand, is another kettle of fish… that taking an AI helps reduce the risk of breast cancer returning, either in its original setting or in the other breast.

Jump to this post

I really wish doctors did a better job at explaining this!

REPLY

I was diagnosed with Stage 1 invasive ductal carcinoma. I had a lumpectomy and radiation and have now been prescribed Tamoxifen. I, too, have been very conflicted about taking this medication due to the side effects. I am awaiting an appointment with a nutritionist to determine if a serious change in diet will provide a similar reduction probability to the tamoxifen. I had initially agreed to try it but still have not. Treatment for breast cancer is a very difficult but personal choice and you must do what you feel is best for you both in regards to treating your cancer and your quality of life. Good luck!

Liked by rabab101

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