1. < Breast Cancer

Conflicted on taking medication

Posted by rabab101 @rabab101, Oct 11, 2019

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:-)

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rababkoepp | @rababkoepp | Mar 28, 2021
In reply to @anne72 "5 years ago at age 64, I was diagnosed with Stage 1 mutifocal invasive dcis. For..." + (show)
@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 really enjoyed reading your post and wondering how you are doing?

REPLY
cerwin | @cerwin | Apr 16, 2021

I was diagnosed with Stage 1 BC, Grade 2, invasive Ductal Carcinoma (IDC) with 2 small tumors in right breast. ER+PR+HER2 negative. 1 lymph node out of 5 was + for small area of metastasis. Ki 67 proliferation rate 50%, Oncotype 27, just two digits over into the “will benefit from chemotherapy” category.

I prayed about it since my Oncologist at Mayo Clinic Jacksonville had to recommend it based on the stats. I needed to make a decision and was conflicted, so I had another appt with him. I made the decision to say no to IV chemo based on my borderline stats and how challenging it would be to not have bad side effects because of current health issues in exactly the areas the chemo would hit. He understood my concerns and how my already-difficult quality of life is. He did say he would be ok with the decision, but I would definitely need hormone chemotherapy, to which I agreed, so I start on anastrozole 1 mg tonite, for 5 yrs. I also signed up for a research study on what dosage would benefit patients with ER+ tumor profile, with fewer side effects. Did your Dr prescribe depression, pain or anxiety meds? Is there another drug besides tomoxifen you could try? I know it’s a hard decision to make and I’m not saying what your decision should be; just sharing my story which may help you. I do think it’s important for you talk with your Oncologist again. Wishing you the best!

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 21, 2021
In reply to @cerwin "I was diagnosed with Stage 1 BC, Grade 2, invasive Ductal Carcinoma (IDC) with 2 small..." + (show)
@cerwin

I was diagnosed with Stage 1 BC, Grade 2, invasive Ductal Carcinoma (IDC) with 2 small tumors in right breast. ER+PR+HER2 negative. 1 lymph node out of 5 was + for small area of metastasis. Ki 67 proliferation rate 50%, Oncotype 27, just two digits over into the “will benefit from chemotherapy” category.

I prayed about it since my Oncologist at Mayo Clinic Jacksonville had to recommend it based on the stats. I needed to make a decision and was conflicted, so I had another appt with him. I made the decision to say no to IV chemo based on my borderline stats and how challenging it would be to not have bad side effects because of current health issues in exactly the areas the chemo would hit. He understood my concerns and how my already-difficult quality of life is. He did say he would be ok with the decision, but I would definitely need hormone chemotherapy, to which I agreed, so I start on anastrozole 1 mg tonite, for 5 yrs. I also signed up for a research study on what dosage would benefit patients with ER+ tumor profile, with fewer side effects. Did your Dr prescribe depression, pain or anxiety meds? Is there another drug besides tomoxifen you could try? I know it’s a hard decision to make and I’m not saying what your decision should be; just sharing my story which may help you. I do think it’s important for you talk with your Oncologist again. Wishing you the best!

Jump to this post

@cerwin, it sounds like you have a great partner in your oncologist. Every treatment decision is so individual. May I ask what other health issues contributed to your decision making?

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positiveinma | @positiveinma | Jun 18, 2023
In reply to @roch "It is a very difficult decision between quality of life and chance of recurrence of cancer...." + (show)
@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

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@roch which drug worked best for you and how are you doing now?

REPLY
1 reply
positiveinma | @positiveinma | Jun 18, 2023
In reply to @anne72 "5 years ago at age 64, I was diagnosed with Stage 1 mutifocal invasive dcis. For..." + (show)
@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 How are you doing now since you chose not to take the hormone blocking drug? Did you change anything else in your diet?

REPLY
1 reply
Mentor
Laurie, Volunteer Mentor | @roch | Jun 18, 2023
In reply to @positiveinma "@roch which drug worked best for you and how are you doing now?" + (show)
@positiveinma

@roch which drug worked best for you and how are you doing now?

Jump to this post

positiveinma | @positiveinma

After trying 3 different AI drugs, and discussion with oncologist, I stopped taking everything due side effects. Because I had surgery, chemo and radiation, my reoccurrence rate is low. I do rechecks every 6 months. Now over 5 years since first diagnosed.

My sister had small tumor, stage 0 or 1, she just had a lumpectomy, her reoccurrence rate is higher because she just had lumpectomy. She stayed on AIs.

I had genetic testing, and no genes that indicate it was inherited.

Everybody has to weight risk vs side effects and discuss with provider.

Laurie

REPLY
1 reply
positiveinma | @positiveinma | Jun 18, 2023
In reply to @roch "positiveinma | @positiveinma After trying 3 different AI drugs, and discussion with oncologist, I stopped taking..." + (show)
@roch

positiveinma | @positiveinma

After trying 3 different AI drugs, and discussion with oncologist, I stopped taking everything due side effects. Because I had surgery, chemo and radiation, my reoccurrence rate is low. I do rechecks every 6 months. Now over 5 years since first diagnosed.

My sister had small tumor, stage 0 or 1, she just had a lumpectomy, her reoccurrence rate is higher because she just had lumpectomy. She stayed on AIs.

I had genetic testing, and no genes that indicate it was inherited.

Everybody has to weight risk vs side effects and discuss with provider.

Laurie

Jump to this post

Thank you for this info. It is really helpful to hear different stories to gain more knowledge. Take care!! Holly

REPLY
dick61 | @dick61 | Jun 19, 2023

I have the CHEK2 gene and have had proton radiation for prostate cancer, a mastectomy, 3 positive nodes and more proton radiation and have been taking tamoxifen for 2 years. First year was a struggle with daily headaches, a general feeling of malaise and a lack of caring about all that was important to me. At the end of one year, I decided that half the symptoms were psychophysiological and decided to change my attitude. I became less type A, didn't finish every chore in one day and just cooled it. I am convinced that many of the symptoms of my fellow breast cancer patients are in part emotionally caused. I am much better, 83 and still active and back to playing bridge, etc. Please start re-taking the med and do a deep dive into your psyche. It will get better. Bless you.

REPLY
anne72 | @anne72 | Jun 19, 2023
In reply to @positiveinma "@anne72 How are you doing now since you chose not to take the hormone blocking drug?..." + (show)
@positiveinma

@anne72 How are you doing now since you chose not to take the hormone blocking drug? Did you change anything else in your diet?

Jump to this post

9 years later, I am still cancer free. I’m happy with my decision not to take Arimidex.
I have made no changes in my diet nor anything else in my life. All of my doctors continue to agree with my decision.
Research continues to show that the survival rate in early stage post menopausal women is the same with or without Arimidex.

REPLY
librarymom1 | @librarymom1 | Jun 19, 2023
In reply to @rabab101 "Super pleased with my oncologist. I am lucky enough to be 3 hours away from Mayo..." + (show)
@rabab101

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!!!

Jump to this post

I am meeting on July 6 with my oncologist at Mayo Clinic in Jacksonville. I chose a bi-lateral mastectomy for IDIS in both breasts, 2 tumors in each , grade 3 and grade 1. Lymph nodes were clear and margins were also. I am looking at nutritional options also. At 73, I really don’t want to go through chemo or heavy meds. I am a 25 year survivor of non-Hodgkin lymphoma and have been through the chemo and radiation. Praying for a good report on my hormone levels.

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