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decision not to take hormonal therapy

Hi, I'm Donna K.

Has anyone chosen not to take recommended hormonal therapy with a very small tumor removed and with negative lymph nodes removed and very slow growing and 1 on oncotypeDX but with positive ER & PR?

  • Post #1
  • Mon Jan 8, 2018
I'm Phyllis M., and I'm a survivor of Stage 2 Breast Cancer

I did not do the recommended hormonal therapy. I had the tumor removed, had 36 rounds of radiation. I had no chemo. I had negative lymph nodes, my onco score was 23. So far for over a year I have good results. I changed my diet also and stated using a product from the health food store called Dimm, its short for a long name but it helps to regulate estrogen. But you “must” research and come to know what will be right for you. This was right for me.

  • Post #2
  • Tue Jan 9, 2018
Hi, I'm Angela C.

I did not choose to take HRT because of your same results.

  • Post #3
  • Sat Jan 13, 2018
Broken crayons still color

I was ER+ with Onco score of 21, no nodes. After lumpectomy & 20 Radiation therapy treatments decided against Aromatase Inhibitors. I changed diet to Whole Food Plant Based (no meat, no dairy, no processed, no oil), have list 19 lbs, began exercising & retired at age 64 from my job. BTW…. I just completed radiation the first wk of Jan 2018 & began the way of eating late 11/2017, when I made the decision to refuse the AIs. The side-effects were not worth the % for me, when my research indicated I would likely get better results from changing my lifestyle. BRCA 1& 2 negative.
I also had dx of colon cancer in 03/2017 early stage with ascending colon resection, no chemo. Non-related cancers….but BIG wake up call regarding my diet & stress-levels & overall lack of taking care of this body. Retired after 32 years from high-stress job.
Best wishes to both of you!

  • Post #4
  • Sun Jan 14, 2018
Hi, I'm Pamela S S.

I tried 2 AI’s and Tamoxifen before deciding to forgo anti-estrogens due to side effects. I was stage 1a, negative lymph nodes, and oncotype was 7. My overall improvement in risk with them was around 4% and there was a 90% chance that I did not need them. I know it’s a little bit of a risk but I knew I would struggle for 5-10 years if I stayed on them.
I did change my diet to mostly fruits, veggies, and lean meats. I’ve lost 35 lbs in the last year due to diet changes & exercise which helps reduce estrogen production. I also take calcium D-glucarate , DIMplus, and I just started using ground flaxseed. I also try to exercise 30 minutes everyday. My hope is that maybe my diet and exercise are cutting that 4% risk down to maybe 2%.
Best of luck to everyone!

  • Post #5
  • Sun Jan 14, 2018
Hi, I'm Sage

I’m so glad to read this. I had an oncotype dx score if 6%. Bilateral lumpectomies and negative lymph nodes. DCIS on one side and invasive cancer on right. Due to start estrogen suppressant but am scared. I ride horses everyday and do barn chores. It’s a given I will fall sometime and/or otherwise be injured.The estrogen suppressant can cause osteoporosis, joint pain and hot flashes…none of which I need. Have lost 40 lbs and am active everyday with the horses. I’m seriously considering not taking the drug. Any thoughts? I had stage 0 DCIS and stage 1 invasive. Help! Don’t know what to do. Have had fractured femur 10 years ago and am considered osteoperetic.

  • Post #6
  • Sun Jan 14, 2018
Hi, I'm Samary M.

Greetings, I am 35 years old at the time Cancer survivor of the DCIS stage 0 and the negative nodules Diagnosed in May 2017. They made me genetic tests and it is not genetic. Despite being DCIS in state 0 I decided to have a bilateral mastectomy with reconstruction at the time. I did not receive either radio therapy or chemo therapy and in my visit to the lay oncologist I decided not to take tamoxifen treatment. I decided not to do it because of all the side effects of using this ormonal treatment. I try to take good nutrition, exercises and natural treatment. And perform the checks every 6 months. It is a very personal decision to perform each treatment but it took me a while to make the decision. Good luck and always see what you understand is best for you.

  • Post #7
  • Sun Jan 14, 2018
Hi, I'm Donna K.

Thank all of you for your response. This is the best info I have received and will certainly help me in making my decison

  • Post #8
  • Mon Jan 15, 2018
Hi, I'm hydeparkgal

Hello!

In 2015 I was diagnosed with DCIS of the left breast. Oncotype score of 17 if I recall. I had lumpectomy and radiation but refused Tamoxifen. I didn’t want side effects and met a woman who had taken tamoxifen and still had a reoccurrence. When I went for my yearly check up in 2016, not only did I have DCIS in the right breast, but also IDC with lymph node involvement which was diagnosed as Stage 3.

At this stage (2017) I had chemo, bilateral mastectomies with lymph mode removed and radiation. I am now taking Arimidex and Lupron shots which are estrogen blockers. I was Triple Positive ER, PR and HER2 positive.

Not until I got a 2nd opinion at UCLA did I really understand the role
Estrogen plays in breast cancer. I might have taken tamoxifen and it might not have made a difference. I now have an understanding how the cancer fed off the estrogen off my body and grew.

Estrogen is also present in extra weight, and biggest source is your ovaries for pre menopausal women. I wish I had known prior to this but again it may not have made a difference.

I’ve been a vegetarian for years prior to the cancer and tried to exercise and eat well. I’ve also struggled with my weight off and on over the years. I was 42 at my initial diagnosis with no gene or family history.

My main side effect is stiffness in the joints and some body aches from the arimidex. I take yoga and exercise and it helps. Otherwise I carry on with my usual life.

Make the best decision for you. Many women have forgone hormone treatments and have been fine. Others like myself ended up with another bout with cancer that precluded abstaining from hormone treatments. Btw, my cancer was Stage 3, but Grade 1.

Best wishes on your decision.

  • Post #9
  • Mon Jan 15, 2018
Dee
Dee
Hi, I'm Dee
Dee

Hi Ladies
In July I was diagnosed with Invasive Ductal Carcinoma grade 1,stage 1.. I had a lumpectomy with clear margines and clear lymph nodes. I had 35 treatments of radiation where I was burned badly, had to lay off for 7 days with pain meds and anibotics. I have been taking the hormone treatment since November 1 and now the side effects are awful. I am 70 but feel like 120. The side effects are awful. I have been reading this site for a few days and see this test I did not have oncotype. I am upset that this was not offered to me. I’m trying to read everything I can get my hands on to see if this treatment is really necessary.

  • Post #10
  • Mon Jan 15, 2018

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