Tamoxifen 10mg vs 20mg

@wellgirl Well, it's really great that you persevered with the Tamoxifen & found a way to tolerate it! Most people would have just given up! Especially because you were also juggling depression, which can't be easy. Hormonal imbalance is definitely no joke! We each have to find our own path. I absolutely agree with you about thr importance of preventing a cancer recurrance. I'm willing to jump through a lot of hoops for that!

@jmab
Unfortunately I don't have early stage cancer. My cancer was diagnosed in 2019.
The tumor wasn't found by a lump or mammogram. It was very deep in the tissue and by the time it was found (by MRI) it was 6 cm, which is considered large. It had also spread to my lymph nodes, putting me at risk of recurrence or new cancer. Some women are able to just take Tamoxifen or AIs for five years. My oncologist said there is no question about it, I am in the "ten year plan". They aren't taking any chances. .

I'm genuinely happy that there is this promising study but I won't be able to benefit from it.
Thanks for the information though. I'll mention it to my oncologist.

@wellgirl Glad you're doing ok! It's also hopeful that there are currently clinical trials underway studying 10 mg (half-dose) of Tamoxifen & whether it is adequate for early-stage invasive breast cancer. My oncologist is following these trials & says that they are promising.

The study, called the Baby Tam study was specifically for women with DCIS or Ductal Carcinoma in Situ. It has shown that women with this specific cancer do well on 5 mg. There haven't been studies done on women, such as me, who had invasive ductal carcinoma. That said, it doesn't mean doctors aren't prescribing 5 mg Tamoxifen for women who can't tolerate a higher dose. Any woman who has had a hard time on AIs should ask for a break before starting up on Tamoxifen. You need to know what is doing what to you. AIs and Tamoxifen did the same thing to me. I became very depressed. For your information, Susan Love, MD wrote (Dr. Susan Love's Breast Book) that women who have had a "hormone driven" depression such as post partum depression or PMS, have a tendency to suffer depression on these hormone blockers. It doesn't matter what symptoms you have, AIs and Tamoxifen for some women is horrible. We belong to the club no one wishes to join.
My medical oncologist lowered the dose to 5 mg and slowly increased the dose over months. First I took 5mg. Then he raised the dose to 10 mg. Then 15mg... He pretty much let me be in control, telling him if I were ready. I think that losing our autonomy can make our symptoms worse. We need to be partners with our oncologists. I switched oncologists twice because the first two were dogmatic and snarky with me. Because of the size of my tumor and the fact that I had lymph node involvement, I am on the "ten year plan", in other words I'm on this stuff for ten years. Hormone blockers are bad enough. I did not want to have appointments with a doctor who didn't respect me. Since none of you are complaining about depression, I won't go into details of the "cocktail" I take to tolerate the Tamoxifen without being unbearably depressed, but inching up on the dose of Tamoxifen I've been able to tolerate it at 20 mg when at first it was unthinkable. I recommend that you include your PCP or a rheumatologist in your cancer care team because sometimes you can take medications or supplements that will help your symptoms, which will help you tolerate the Tamoxifen. I know, it's a lot and your taking more pills, but you really want to do whatever you can do to prevent having cancer again. I have mild hot flashes but nothing unbearable. My mood is much better. I think my body slowly got accustomed to the Tamoxifen. When my oncologist found out I was finally tolerating Tamoxifen at the correct dose, he did a "happy dance" in the hallway! Good luck to you.

@melo777 you can try the 20mgs of Tamoxifen & if you have issues, drop down to a half-dose, 10mgs. I started with the half-dose in January & I'm doing ok. Some minor side effects but nothing I can't handle. Ongoing trials seem to suggest that a half-dose of Tam is adequate for most people, according to my oncologist. (But final results are still pending.) Might be an option for you!

@malebreastcancer47 This doesn't make sense to me. Oncotype scores are designed to analyze whether or not chemo would be beneficial. Their risk of recurrance scores (with & without chemo) assume the patient is taking endocrine therapy. I find it frustrating that's there's so much confusion about oncotype testing. It almost seems to defeat the purpose.

@melo777 I took Tamoxifen for 5 years straight. IT IS MISERABLE. I can’t prove anything, but I was left with fibromyalgia after finishing Tamoxifen. They are all poison, but what choice do we have? I was cancer free for 27 years, but did get a different breast cancer on the other side. Best wishes

@jardinera25 I take super beets for high blood pressure. They work well.
As for taking Tamoxifen, my side effects are different than your but 10 mg is working for me.
Not all med play well together, some do more harm long term.
None of the meds will prevent cancer from returning, but only minimize.

What is your oncotype score? Mine is 34.

My doc is disappointed that I'm only willing to take 5 mg of Tamoxifen a day, but I'm exhausted by side effects that impact my quality of life severely. First it was the AI's that raised my blood pressure so much in 4 months that I now live with labile Hypertension every day. Second was the Fulvestrant, another hormone blocker, that in 4 months gave me very achy legs, and left me with some vein insufficiency and a capillary rash called Petechiae. I will not go on Verzenio. I'm willing to try Tamoxifen, but at 5mg I still have joint pain & seeming slippage , hot flashes, headaches some days. Very disheartening these drugs they have for us.

I also had two other medications before I was switched to Tamoxifen. It had fewer side effects for me. After a few weeks I started having terrible leg cramps. So now when it gets to bad I just stop it for 2 days and then start back up. After time I think my body is adjusting better because I don't have to take a 2 day break as much as I did in the beginning. It is so very important to take the estrogen blockers. Hang in there! And good luck!
Kristine