Hair Loss and Tamoxifen

[joyink]

I had a lumpectomy and radiation for breast cancer, Stage 1 and started on Tamoxifen a month ago.  Since then my hair has been falling out by the handful.  Has anyone experienced this as my current oncologist insists that there is no way Tamoxifen could cause hair thinning or hair loss. I went to UCLA for my surgery and follow up care and was told that if I just had the surgery alone, my chances for a long normal life was 94%.  Radiation upped that by 4%, or 98% and that Tamoxifen only added 1% to this.  I am wondering if I chould just stop the Tamoxifen and not take any estrogen related drugs.  I was fine throughout my surgeries and the 7 weeks of radiation, but this sudden hair loss has reduced me to depression and long bouts of crying.  Has anyone got any ideas?

[CCF-RN,MSN-rf]

Dear joyink:  Hair loss is an uncommon side effect of tamoxifen that is temporary according to the literature.  In addition to the benefits of reducing recurrence in the lumpectomy breast, tamoxifen may also reduce the risk of developing cancer in the other breast.  You might want to discuss this further with your oncologist to see if there may be other options if the side effects of tamoxifen are unacceptable.  You may also want to consult with a dermatologist about other possible causes of the hair loss or treatment options.

[carme]

I participated in the Tamoxifen trials that proved this drug can help many. I too had hair loss, but not as drastic as you're talking about. I went off the trial in 1997, had bilateral mastectomies 12/03. No radiation or chemo. The areas where my hair thinned, have come back...with more hair than I had before...go figure. My mom took Tamoxifen for 5 years and it staved off cancer reoccurance for 7 years before it came back as Ovarian cancer.
No matter how bad you feel or think you're gonna feel...choose life, it beats the alternative.

[boninclyde]

Do you mind if I ask why you decided on the bilateral? Were you not into menopause after the end of your 5 years on tamoxifen? Or did the cancer come back? I am trying to decide between tamoxifen or having the ovaries removed. Thank you.

[carme]

I did NOT have cancer when I took the Tamoxifen during the trial. I CHOSE to participate because of my family history and the fact that I have 3 daughters. I wanted to help and will continue to help to find a cure for this horrible disease.
The tamoxifen did not put me into menopause. While it gave me alot of menopausal symptoms like night sweats, swelling, lack of libido, I still had my period every 28 days, I still PMS'd, still had the monthly acne. I was 44 years old.
I have the BRCA2 mutation, so when they found cancer in one breast, I had the bilateral mastectomies. Ten months later I had 'total' hysterectomy performed by a gynecological oncology surgeon on more than 3 doctors recommendations.
I have witnessed breast cancer since I was a child. I will fight it with everything I've got and everything that is available to me, and I'll do it if it hurts, makes me feel like hell and look like hell too. (I lost my implants and choose not to wear prosthesis now). Like I said before, choose life now, because you cannot change the alternative.

[cyn17]

You are a fighter and an inspiration to us all! You remind me to live each day with grace and gratitude. Thank you.

[boninclyde]

I thought I had remembered your posting here before. Wow you have been through allot. Thank so much for sharing. It's hard to believe tamoxifen did not put you into menopause. But I have read it does not stop the estrogen for some women thats why I am considering surgery to remove the ovaries.

[joyink]

I called another oncologist about my hair loss and he said that what he can do is to give me a shot every month to induce menopause and try me on another aromotase inhibitor as the hair loss and severe lack of appetite is making my life unbearble.  As this new oncologist is with UCLA and has a great reputation and has options for me, I'm going to see him.  I didn't like my oncologist for negating what I said and making it seem like my hair loss was 'all in my head' as it is a real and signficant side effect.  As I found an oncologist who has alternatives, I am so relieved.  How many of you would go off Tamoxifen if you had severe side effects?  I want quality of life and not quantity.

[carme]

You have every right to want 'quality of life' over 'quantity'... my hair grew back and so did my mom's. We chose 'quantity', she for her kids and grandkids, (they gave her reason to live). I for my spouse, girls and grandkids...they give me reason to live.
No one said fighting cancer is a breeze, but it sure beats the alternative!