Prophylactic/preventive Tamoxifen and other breast cancer prevention?

[Princesca]

Not asking for medical advice, just interested in hearing about other people's experiences/decisions.

I would love to speak with people who have started taking Tamoxifen, or other measures, based on a family history of breast cancer. I don't want to put my whole medical history out here, but I have some questions about the decision/experience and would love to talk to other people who've been through it. (Whether you decided to do it or not! I'm not decided yet, which is part of the issue.) Feel free to DM me or just post here if you'd be willing to share.

 

[anricat]

So I haven't started Tamoxifen yet, but I'm about to. Here's my history:
2019 - abnormal mammogram, stereotactic biopsy, diagnosed with ADH, lumpectomy
After this, I started alternating mammogram/MRI every 6 months
2020 - abnormal mammogram, stereotactic biopsy, benign calcifications
2021 - abnormal mammogram, stereotactic biopsy, benign calcifications
2022 - normal mammogram in June (YAY), MRI, however, in late December showed a 6mm lump, ultrasound guided biopsy, confirmed cancer: Stage 1 Invasive Ductal Carcinoma, ER/PR positive, HER2 negative.
I have surgery next week to remove it and also 2-3 lymph nodes. I will then have radiation. I'm negative for BRCA mutations. No family history. Chemo likely not necessary but still on the table depending on pathology findings.
Now looking back, would I have taken the Tamoxifen knowing that it may have prevented my ER/PR positive cancer? I don't know. I mean, the good news is that I was doing the alternating mammogram and MRI. They will be starting me on it after my radiation treatments are done. I'm not looking forward to the side effects. I've been told that the other risks (blood clots, uterine tumors) are very rare and it's worth the tradeoff in my case now.

Not sure if this helps, but there it is.

 

[Princesca]

Thanks so much for sharing your experience! I keep telling myself I'll deal with all this as soon as I get past my first preventive colonoscopy. I am definitely in 'drinking from a firehose' stage lately.

 

[anricat]

Thanks so much for sharing your experience! I keep telling myself I'll deal with all this as soon as I get past my first preventive colonoscopy. I am definitely in 'drinking from a firehose' stage lately.

I'm due for my colonoscopy but I asked if I could wait until I'm done with all this other mess. I don't need another thing to pile on top! Definitely feeling that same firehose.

 

[MaggieBags]

Hi Princesca -

I’m on Tamoxifen after a cancer diagnosis, not because of family history. If you are looking for accounts of how people have faired on the drug, I can tell you I’ve done well. I was scared to start after hearing stories from other women but my side effects have not been drastic. Like Anricat mentions above, Tamoxifen does come with risks but they are low. The extra percentages of staving off a recurrence is what I concentrate on.

I wish you the best of luck in your decision!

 

[Princesca]

Hi Princesca -

I’m on Tamoxifen after a cancer diagnosis, not because of family history. If you are looking for accounts of how people have faired on the drug, I can tell you I’ve done well. I was scared to start after hearing stories from other women but my side effects have not been drastic. Like Anricat mentions above, Tamoxifen does come with risks but they are low. The extra percentages of staving off a recurrence is what I concentrate on.

I wish you the best of luck in your decision!

Thank you for sharing that! I have a couple of hurdles to get over, then I'm going to schedule a follow-up with the cancer center to discuss. My mom's cancer turned out to be stage 0 in one breast and stage 1 in the other, her lumpectomy went great and she'll start radiation soon. I guess my feeling is that if I knew my experience would be same as hers, I wouldn't feel as pressured to do the Tamoxifen, with the risks, especially given that I won't be my mom's age for another 3 decades and who knows what treatment will be like by then. But if it's more my sister's experience, that's a different story... she was first diagnosed at stage IV :/ She's doing well, given that, but that is very scary.

 

[MaggieBags]

Hopefully your appointment can give you clarity. It’s a big decision for sure. Hope your Mom and sister are both doing well!

 

[LiDa]

Not asking for medical advice, just interested in hearing about other people's experiences/decisions.

I would love to speak with people who have started taking Tamoxifen, or other measures, based on a family history of breast cancer. I don't want to put my whole medical history out here, but I have some questions about the decision/experience and would love to talk to other people who've been through it. (Whether you decided to do it or not! I'm not decided yet, which is part of the issue.) Feel free to DM me or just post here if you'd be willing to share.

I didn't take Tamox as a prophylactic, but after DCIS. Took it for 5 years & literally danced when my onc told me I could stop. I've actually never heard of taking it as a prophylactic -- too many side effects, I would have thought.

 

[Princesca]

I didn't take Tamox as a prophylactic, but after DCIS. Took it for 5 years & literally danced when my onc told me I could stop. I've actually never heard of taking it as a prophylactic -- too many side effects, I would have thought.

I'd have thought so too, but apparently it's quite common. :/

 

[tetera]

Family history of BC here- Doctor brought it up as an option; ended up having a prophylactic double mastectomy. One of the best decisions I ever made.

 

[LilyJC]

After seeing both my mom and aunt go through chemo, I opted for the prophylactic double mastectomy and reconstruction. Definitely thankful to be able to have it done at a state of the art facility. Now just waiting to be old enough to remove my ovaries unless any issues arise with ultrasounds/blood test.

 

[Thomas42]

So I haven't started Tamoxifen yet, but I'm about to. Here's my history:
2019 - abnormal mammogram, stereotactic biopsy, diagnosed with ADH, lumpectomy
After this, I started alternating mammogram/MRI every 6 months
2020 - abnormal mammogram, stereotactic biopsy, benign calcifications
2021 - abnormal mammogram, stereotactic biopsy, benign calcifications
2022 - normal mammogram in June (YAY), MRI, however, in late December showed a 6mm lump, ultrasound guided biopsy, confirmed cancer: Stage 1 Invasive Ductal Carcinoma, ER/PR positive, HER2 negative.
I have surgery next week to remove it and also 2-3 lymph nodes. I will then have radiation. I'm negative for BRCA mutations. No family history. Chemo likely not necessary but still on the table depending on pathology findings.
Now looking back, would I have taken the Tamoxifen knowing that it may have prevented my ER/PR positive cancer? I don't know. I mean, the good news is that I was doing the alternating mammogram and MRI. They will be starting me on it after my radiation treatments are done. I'm not looking forward to the side effects. I've been told that the other risks (blood clots, uterine tumors) are very rare and it's worth the tradeoff in my case now.

Not sure if this helps, but there it is.

Very interesting! Thanks for sharing!

 

[anricat]

I just wanted to circle back on this one. I finished my radiation treatments a few weeks ago and started on Tamoxifen 20 mg and Zolodex injections on May 1. My only side effects so far are a little bit of fatigue, occasional headaches (more than I used to have) and I'm already gaining weight (yikes) but it's hard to know if it's the Tamoxifen or the Zolodex. At this point, to not have reoccurrence hanging over my head, it's worth it. Honestly, looking back NOW after finishing treatment, I do wish I had started on the Tamoxifen after my ADH was discovered in 2019.