• Ductal

    Asked by Schu on Friday, March 22, 2019

    Ductal

    I have a 2 mg tumor. I’m estrogen & progesterone positive HERT negative. I scored a 10 on the oncotypeDX so chemo was not necessary. One lymph node out of three tested positive. Onc prescribed Arimidex but I’m very hesitant to take it. I took the an onlline cancer test ( if that can be believed) and it stated I would live 3.5 years less. Radiation is not an option as I had Hodgkin’s disease in my 20’s which is why I have the BC. It also destroyed my ovaries at that time. I have osteopenia due to the radiation. I’m 67 now. I also have an auto immune disease (vasculitis) and get infusions which take out my immune system for 6 months at a time over the next 1-1/2 years. I am freaked out by the side effects. I have an active and great life and am weighing this against vaginal dryness, weight gain, hair loss, but most especially bone loss and joint pain. Many of these symptoms seem to crop up after a year or two when stopping would not reverse them. Thoughts, please. Thank you so mu

    14 Answers from the Community

    14 answers
    • Carool's Avatar
      Carool

      Hi, Schu. I’m a b.c. survivor, too, but with a triple-positive cancer that was 1.7cm. I did not have a medical history similar to yours, so I did take Femara without fear (I was 52 then; I’m now 70). I wish I had some info to give you, and I’m writing just to say I’m glad you found WhatNext and I wish you well. Maybe another b.c. survivor will have some good information.

      27 days ago
    • Schu's Avatar
      Schu

      Carol, thank you.

      27 days ago
    • lujos' Avatar
      lujos

      Hi Schu! I can see you have a hard decision! I don’t have your complex medical history, but took femara (letrozole) for 4 years , then my bc recurred anyway. I’m having chemo again now, then they recommend exemestane (Aromasin). I don’t have much faith that it will keep the cancer away, as the letrozole didn’t!

      I’m 65, quality of life key to me, so I’ll try this drug, but if it makes me feel too bad I’ll stop. You should know soon after starting it whether you can tolerate it well, so maybe decide then?

      27 days ago
    • cak61's Avatar
      cak61

      Is it possible for you to take tamoxifen?
      It actually increases bone mass.
      Also has side effects.
      Increases risk of uterine cancer and blood clots. These risks are low, but if you are already risk you may not be able to take it.
      It acts different from the AI's.
      Research and talk with your doctor.
      I tolerated it better and saw an improvement in my bone density test after the arimidex caused osteopenia.
      Best regards.

      27 days ago
    • Horselady46's Avatar
      Horselady46

      I had a similar bc and had a mastectomy then chemo. I was then put on arimidex and got some bad reactions and stopped it. They then put me on Tamoxifen. I was on it for 5 years and the side effects were tolerable. So you might try it and see.
      Good luck.

      27 days ago
    • Sunshine777's Avatar
      Sunshine777

      I had BC cancer 6.5 years ago. I was on Tamoxifen for the first five years. (I believe that Tamoxifen is for pre-menstrual women. I read about other cancer risks that may be influenced by this drug.) Then, a new doctor prescribed Femara, which I took for 6 months and endured leg cramps and tough hot flashes. For a year now, I've been taking Arimidex, with less leg cramps and easier hot flashes. I take a calcium supplement daily. I hope you find what's right for you!

      26 days ago
    • cak61's Avatar
      cak61

      @Sunshine777, premenopausal can only use tamoxifen, post menopausal can use either.
      Prior to aromatase inhibitors all used tamoxifen. AI's offer a slight improvement in recurrence rate, but if you can't tolerate them tamoxifen is still a potential option.

      26 days ago
    • Catlovercarla's Avatar
      Catlovercarla

      My tumor was similar to yours but I had no nodes and was able to have radiation. I decided to give anatrozole a try. I had headache and some nausea in the am and joint pain really bad in my hands. Because I was becoming osteopenic I was switched to tamoxifen, even though I am post menopausal (67).
      I too am a big fan of “quality of life”! Although tamoxifen is a little better, I am not sure if I can stay on it. I so understand! I would ask your oncologist if tamoxifen is an option. A bone fracture would not be good at our age. And I also did not want to have infusions of more drugs for my bones. Let me know what you decide to do. Good luck!

      26 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Only you can decide how much quality of life you're willing to exchange for some (hypothetical, statistical) extra years, and how much extra time is enough to make it worthwhile to impact your quality of life.

      If you're talking about the UK "Cancermath" test, my results showed that adding an AI would improve my recurrence-free survival chance by 2% over tamoxifen alone, and give me an extra year or so of life. (Adding chemo would have given me maybe another 6 months, tops). As I age, a year becomes more and more significant. So I decided that as long as the effects are tolerable, I'll stick with the letrozole for the recommended length of time--but I may revisit my decision if the effects become intolerable.

      And remember, those tests are based on statistical algorithms. They're not a guarantee of infallibility.

      26 days ago
    • FayefromTassie's Avatar
      FayefromTassie

      I had early stage ductal adenocarcinoma in 2005 aged 56. I had no lymph involvement at all, and my pathology was HER 2 positive, as well as oestrogen and progesterone positive. Following bilateral mastectomy, I had 4 rounds of AC chemotherapy, and started on Arimidex immediately after. I also had both ovaries removed, as my BC is familial, with a very high incidence in my family. 8 months after treatment I was offered and subsequently received, 12 months of Herceptin infusions, for my HER 2 status. I stayed on Arimidex for the full 5 years, with no side effects whatsoever. I was closely monitored for possible heart muscle damage, which thankfully turned out to be a non-issue for me. I also had a bone density test prior to starting Arimidex, which showed normal for age results, and had a test immediately after finishing the 5 year course, which only showed normal for age results also. I should add that throughout my treatment and continuing on until the present day, I have been active physically, walking most days for at least an hour, as well as swimming a couple of hours 3 times a week. I believe this has contributed to my good bone density, as well as my well-being. Its been my experience though, that every Breast Cancer survivor has their own unique set of circumstances, and its not a "1 size fits all". But regarding Arimidex, I can only say that I believe it has been a very important part of my survival, and that I found it to be very easily tolerated. I hope this helps and I wish you the best of luck with your journey

      26 days ago
    • Cynderbrik's Avatar
      Cynderbrik

      Good comments about talking to onc about tamoxifen, but in addition consider getting a second opinion. With your varied issues consider a major center like Mayo, Hopkins, Cleveland, Anderson, etc. Your onc or PCP might be able to suggest which place is best. Obviously, insurance, job, financial ability, distance, etc. factor in. Good luck.

      24 days ago
    • DarcyLeigh's Avatar
      DarcyLeigh

      I don't have any answers, but can share my experience to compare. I had two masses. Same breast. Onco of 15. Her2 neg, ER & PR positive. Mother died of breast cancer. After surgery, 0 lymph out of 7, I had radiation. Began AI immediately after. I've tried all 3, currently on Arimidex for 2 years now. I also struggle w an immune type disorder (sweet syndrome) which has brought its own set of issues and meds. The only side effects I have experienced are some joint pain in my hands and some exhaustion if I don't get enough sleep. Nothing else. On the others, symptoms for me appeared within weeks and were horrendous. If it was listed, I had it. Side effects w the others did go away when I stopped taking them. I'm going to try and stick it out- promised my children. I don't want to lose any time, even if it's only 1 more year. I'm in year 4 and was 54 when diagnosed. Talk to your Dr. If you're not comfortable w the advice you're getting, perhaps you should speak to someone else. It's your decision but you should be comfortable with it so your daily life continues as you want it to without doubts. Best of luck to you!

      24 days ago
    • Vaughnn's Avatar
      Vaughnn

      I have no answers either. I am similar to your diagnosis and had 2 masses removed in close proximity in 1 breast. I had the lumpectomy with minimal scarring . No lymph nodes were affected. I had clear margins from the surgery. My onco was 45. I declined chemo as I have been weak and falling since a car accident prior to my diagnosis (my mobility). My quality of life is important to me. I fear hair loss as well. I choose to build my strength up and go to radiation. I just started radiation this week. I will schedule my bone density scan by the end of April/beginning of May as I am post menopausal. Blessings on your continued journey. Keep your doctor up to date on your concerns.

      23 days ago
    • Schu's Avatar
      Schu

      Thank you for every response. Nancy

      22 days ago

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