Dr said it’s up to me if I take tamoxifen. ??

Faith1111

I need to made a decision and it's hard. Found out at I had 2.5 mm, invasive ductal carcinomaestrogen/progesterone + tumor in May. Had lumpectomy with clear margins and clear lymph nodes. HERs negative. don't carry breast cancer gene. Turning 49 shortly. Premenopausal. Don't smoke or drink alcohol. 24 BMI. Still doing radiaton.

Drs actually talked me out of double mastectomy with recon because my tumor was so small and it's low risk grade.

Chief oncologist says it's up to me if I want to take tamoxifen because my tumor was so small and other details I mentioned. She said overall without tamoxifen my recurrence rate would be 8%. That's 4% for left side cancer breast, 3% for other breast and 1% for remainder of my body which gives you the number 8. If I take tamoxifen my risk is 4% total. I didnt know they added up risks this way. It makes it seem bigger.

She said many of her patients elect to not take it and she wants me to be fully informed. She said if she thought I really needed it and my risk was higher she wouldn't be afraid to twist my arm into doing it if I objected. I asked her what she would do for herself if she had my situation and she said she would take it to see how bad the side effects were and if they affected her quality of life she would discontinue it.

I am concerned about endrometrial cancer since my grandmother had it but she said the risk was less than 1%.

I am very afraid of cataracts, endromrtrial cancer and hearing loss the most. (I have slight hearing loss already.)

I also am upset about the thought ofhaving thinning hair, vaginal atrophy, older looking skin due to lack of estrogen, fat redistribution to my midsection, depression, blood clots, etc.

I'm divorced and don't want to look older sooner since my goal is to get married again and we know how shallow men are to us women who aren't 25 anymore.

So if I don't take it, I would be gambling with cancer. It's acary. I'm actually surprised I get to make the decision. The radiologist oncologist is letting me skip the boost because my turmor was so small and she agreed they was okay. So I already feel like I'm cheating on the treatment even though it was approved for me to do so.

Another thing. In Jan I started taking vaginal estrogen cream at the prompting of my gynecologist because she thought it would stop my bladder infections. I stopped taking it after 5-6 weeks because I was so scared of getting breast cancer even though she insisted it wouldn't do that. So it's funny how my tumor grows on estrogen, huh? All the doctors are saying they don't think it's related but who knows? I only found my breast lump because I was so paranoid about the estrogen cream. So it either gave me cancer or saved me because it made me pay attention. The estrogen made my hair thin by the way. I know it will regenerate since I stopped taking it.

What would you do if you were me? Would you take the tamoxifen?

kec1972

For that small of a potential benefit, I personally would not take it in your situation.

Faith1111

thank you for your reply

AC1965

I don't think I would take it either if I were in your position.

DorothyB

I wouldn't take the full 20 mg. I might, maybe choose to take 5 mg. What I would do is make sure that my lifestyle is one that helps keep me from getting a recurrence.

With your BMI, sounds like your weight is good.

Regular exercise (at least 30 minutes of moderate exercise 5 x per week and some strength training exercises).

Diet that has a LOT of whole foods - berries of various kinds, apples, stone fruits, carrots, mushrooms (cooked), tomatoes (cooked), leafy greens, spinach, cruciferous veggies (broccoli, cauliflower, brussels sprouts, cabbage), whole grains, sweet potatoes, plant-based and grass-fed proteins, etc.

Working to keep stress down.

Sjacobs146

I had no SEs with the Tamoxifen. You could try it and see how it goes.

ShetlandPony

Faith, the tamoxifen endometrial cancer concern is only for postmenopausal women, since the lining of the uterus is regularly shed in premenopausal women. Your doctor might recommend a daily low-dose aspirin to protect against blood clots. As far as vaginal atrophy, get some good lube and keep in shape, so to speak. I agree with your onc; it’s ok to try it and see how you feel. Personally I did not notice any skin or hair problems or depression, though I did change shape a bit.

SummerAngel

I was in a similar situation except that my tumors were larger and there were two (well, more than two because of one being multifocal). I have a very low risk of recurrence, normal weight, eat well and take good care of myself. I tried Tamoxifen, had terrible side effects, tried a half dose, had terrible side effects, then quit after about 4 months with my Oncologist's blessing. It was worth a try for me. So if I were you I would try it and see how it goes.

KBeee

I would take it and see what the side effects are for you. Many women have zero side effects. Knowing you are low risk, if the side effects are hard, you could discontinue it. This is to reduce your risk of distant metastasis, which is not curable, only treatable, and if you skip it, then you have not addressed that risk at all. These are hard decisions though, with no clear cut right or wrong answer; it has to be what's right for you.

flashlight

Hi Faith1111, I know this is a difficult decision for you. Most of us wish we were given an option of not having to take this medication. The unknown is what scares us the most. You are stronger than you know.....we all are. I think you should give it a try at a low dose and see how you feel. You are probably in or starting perimenopause. Many of the side effects are the same for menopause. Unfortunately, we all have to go through it. My eye doctor said she doesn't see any side effects from the 20mg dose of Tamoxifen. Everyone will gets cataracts by 60. Do you see your eye doctor routinely? I am postmenopausal and had thickening of my lining. I had a D&C last Thursday and she removed a large fibroid, which I had for years, that she thinks was the problem. I am waiting for the results. As far as vaginal dryness at first it was terrible and my GYN suggested Replens glycerin 3x a week. After being on the tamoxifen for a few months that issue has resolved. I haven't read anywhere about hearing loss. I think blood clots are about the same odds as birth control pills. I am concerned about my liver. My insurance will only pay for a liver function lab every 6 months. I take a few more supplements then I did in the past and I am trying to get myself back in shape. Give yourself some time to heal.

Good luck to you in whatever you decide to do. Those shallow men don't deserve you!

Faith1111

Thank you for your kind words and great suggestions. I do get my eyes checked. I think I will ask for baseline tests to make sure there are no dangerous changes. You’re right I do already notice perimenopause symptoms so maybe it won’t be a drastic difference. I will probably try the drug although I have time to wait until radiaton is over.

Faith1111

Thank you. I think I will try it. You know my doctor didn’t tell me I had the risk of distant metastasis so this is actually a surprise. She mentioned the 1% chance for the rest of my body yesterday and that surpised me but I started taking about side effect so it dint sink in. I thought I was in the clear due to clear lymph nodes.

Faith1111

Thank you

Faith1111

Thank you Summer Angel

Faith1111

Shetland Pony thank you for letting me know it didn’t affect your skin or hair and your other info!

Faith1111

Well, I replied to several people before realizing you have to mention their name in the post it doesn’t automatically say their names. But thank you to everyone who replied to me. I think I will try it and see how it goes.

I talked to a skin care person and she said try taking collagen skin firming supplements by HUM nutrition for example. It has Hyaluronic Acid and it is supposed to help with skin elasticity. My oncologist said it was safe to take.

I also might try the Mona Lisa Touch laser for the female issue side effects should there be any.

I guess there’s always cool sculpting for the mid section?

I will get baselines on my eyes and all the other organs I’m concerned about.