Hormonal therapy ?

[Rarlod]

Hi, I was diagnosed with extended DCIS with ER+, PR+.I had a total mastectomy with a diep flap 2 weeks ago, My surgeon referred me to medical oncology for hormonal therapy. I am curious do I still need hormonal therapy as I already had a mastectomy, as far as cancer recurrence and preventing cancer on another breast, I can check at intervals by MRI and Sono.Any suggestion?

[mathematics]

Hi sorry to hear that you have had such a hard time lately with cancer. They usually offer hormone therapy as adjuvant therapy to ensure that the cancer does not come back. I had tamoxifen and then letrozole for a total period of 10 years after I had cancer, which was a grade 3. If you can tolerate the side effects it is a good idea. Take care and all the best.

[Rarlod in reply to mathematics]

Thank you.

[Lulu427 in reply to mathematics]

At what age were you diagnosed? How did you do on the tamoxifen? Are there any tips you would give anyone going on tamoxifen ? I’m supposed to start it soon and really really nervous about it. I am 48.

[Rarlod in reply to Lulu427]

I am 42 diagnosed with DCIS with Er+Pr+ on my left breast had a mastectomy with a diep flap in Feb and started Tamoxifen last month. Tamoxifen side effects cause uterine cancer and it affects the eyes too so an annual check with Gyanocology and ophthalmology is important. I don't have any side effect now it started recently.

I hope this helps you some. Best of luck.

[mathematics in reply to Lulu427]

I was diagnosed when I was 47 and after a lumpectomy with left underarm lymph node clearance and tac chemo and radiotherapy they put me on tamoxifen for 5 years then letrozole another 5 years. Do not be nervous about the tamoxifen I found the side effects doable, especially after having tac chemo. I wish someone had told me to go to a slimmers club however where you can get support for keeping your weight down. Advice on free foods and what you can eat to fill up on without piling on the pounds would have been useful. Also hair shampoo such as growme which helps with hair loss would also have been useful. I personally felt that the adjuvant therapy to stop cancer coming back outweighed the negative side effects. Take care and all the best

[Warrio]

Hello, I also am Er/Pr+ I am on hormone suppression therapy (shots) it was explained to me that this is needed to help prevent recurrence as the cancer was being fed by the hormones. Cancer can be a tenacious beast. I was given the option of having my ovaries removed in place of the ovary supression shot. I chose to take the ovarian and hormone supression shots. I did this because the ovaries are not the only body part that produces hormones and I didn’t want another surgery. Originally it was proposed that I would be on the anti-hormone therapy for at least 5 years. For me the side effects are mild. I am on Faslodex and Lupron.

I hope this has helped some. Big hugs. Happy recovery.

[Rarlod in reply to Warrio]

Thank you

[Jack2019]

I think something to consider in making this decision is if anything was found in the lymph nodes. I had stage one, ER+ PR+ HER2-, in each breast over a two year span, 2018 and 2020. I had clear margins and clear lymph nodes both times. I received lumpectomies, and lots of radiation. I did take the hormone drugs after the first bc but chose to stop them after the second. They obviously were not working for me. I had follow up scans every 6 months for about three years after and now just once a year mammogram.

[Rarlod in reply to Jack2019]

I’m 40 pre menopause. I had a left mastectomy for DCIS, the margin is clear, lymph nodes are negative and the genetic test is negative, I am nervous about taking hormonal therapy because of side effects I am also thinking of doing a scan every 6 months.

[Jack2019 in reply to Rarlod]

I feel for you, you are very young. It has to be a personal choice for sure. I think you maybe could contact a support group, or do you have a care nurse assigned to you, Maybe they can help you get a second opinion on medication risk reduction for your situation. By all accounts I think you would be classified as cured, especially since you had not had an invasive situation. What I learned myself, after I got the second bc was the medication is not as effective if you are carrying extra weight. Nobody mentioned that to me, if they had I would have worked very hard to lose weight. Apparently fat makes estrogen. If you are Her2 negative that is also going to work in your favour.

[Hidden in reply to Rarlod]

I hadDCIS. My margin had a 0.3 cm cancer in right breast. I had lumpectomy and radiation. I chose not to take Tamoxifen because of side effects and my cancer was so small. 3.3 years later my annual mammogram showed cancer. I had a 1.5 cm cancer in same area, both times node negative. I wish I had taken the Hormone therapy. They offer Letrozole now for post menopausal women( I'm 72) and I'm taking that.

[KindArtist]

Hello Rarlod, my pink ribbon sister,

I was just prescribed the hormone blocker Letrozole yesterday as a follow up to my Stage 1A invasive carcinoma and lumpectomy. My tumor was estrogen and progesterone positive and HER2 negative, which is a good thing as the risk of recurrence can then be treated and lowered with hormone blockers. The risk of recurrence for my particular type of cancer is 10-12% and the hormone blocker pill (taken daily for 5 years) will starve any possible micro cells lurking and keep them from developing - they could metastasize anywhere in the body otherwise, which is a significant life-threatening non-localized risk. As you probably know by now, cancer is complicated and each individual ‘s situation is different. The doctors look at the tumor size, location, grade, Oncotype score from 1-100 (mine was 19), your genetics test (I did not have the cancer-causing genetic mutation), etc. Tamoxifen is one option, but because I have a history blood clots (2 PEs) in the past, Letrazole was a better fit for me (there’s a risk of clots with Tamoxifen).

I got great news yesterday in my second appt with the radiation oncologist: with taking the hormone blocker therapy, I won’t have to do radiation!! This was totally unexpected as I thought for sure I’d have to do at least five days around the tumor site from a pre-surgery consult. But since my margins were clear and I’ll be taking the hormone blockers starting in a day or two, she advised no radiation (!) It boils down to risk based on previous studies. In my case, with all factors taken into account, radiation would not lower the recurrence risk that much, so the benefit of radiation would be minimal. Although recurrence in similar cases to mine is 9% (with taking the hormone blocker), the risk when we are talking radiation treatment is LOCALIZED recurrence risk, meaning the risk of another lumpectomy, not the more significant risk of it metastasizing to other organs (which is what the hormone blocker will handle); in my case, the radiation, with its associated risks, is not justified because it would only lower my recurrence risk by about another 4% from the current 91% odds of no recurrence. I feel confident that the hormone blockers will prevent recurrence, even though they do have the downside of possible bone density loss. I met a woman this week that had been on them for years with no side effects (hot flashes/joint pain). Everyone’s body tolerates them differently. I’ll take it over cancer coming back! Hope this adds insight and helps!

[Rarlod in reply to KindArtist]

Thank you so much for your information. It will help me to make decisions.