Tamoxifen with Herceptin

NotVeryBrave

My MO is talking about starting me on Tamoxifen in 6 weeks - allowing for further recovery post op. For some reason I thought that would start after the Herceptin was done. What have others done?

Also - he ordered a bone density scan. Is there anything else I need to check? Seems like some have talked about uterine lining. No periods since February with chemopause.

Meow13

I think they want to get that hormone treatment as soon as possible. Should be effective on er and pr positive cancer. I know that they want to finish chemo first since that is usually wrapped up between 3 to 6 months.

Good that you had a complete response kind of reassures you did the right thing.

SpecialK

In the time I have been on BCO I have not seen patients wait to start anti-hormonal therapy until after they complete Herceptin. I'm not sure it is wise to ignore one aspect of the type of cancer while treating another.

notverybrave - I would have a baseline TVUS prior to starting Tamoxifen so you know the status of your uterine lining. Bone density status is also good - if you are premenopausal Tamoxifen usually doesn't improve bone density, but Tamoxifen allows circulation of estrogen while blocking the receptors to help preserve bone health. If post-menopausal, bone building can occur on Tamoxifen.

NotVeryBrave

Thanks for the responses. I'm pretty sick of medicines and, given the number of problems that I've had, concerned about SE's. Also - with a great response to the chemo - I guess I don't feel the need for more drugs while I'm still on one that worked so well.

I was not exhibiting any s/s of menopause before chemo except for the occasional hot flash at night. Since chemo stopped my periods, they really don't know whether I'm truly in menopause or not. The plan is to start with Tamoxifen and wait to see if periods resume. Later down the road they will do some testing to determine if I'm permanently in menopause. If so - then they would want to switch me to an AI.

SpecialK

notverybrave - it is an apples and oranges thing - Herceptin will have zero effect on estrogen fueling of any remaining breast cells - that is why you would need to start Tamoxifen even though you are still receiving H only infusions. Chemo generally does not have a super great effect on estrogen enriched tumors, your response was more likely driven by the targeted therapies, so the anti-hormonal med is important.

Kicks

AI's/estrogen blockers and Herceptrin are for 2 different issues. AIs/estrogen blockers are given to those who are ER/PR positive (well at least for ER+ as it is possible but not common to be PR- though ER+). Herceptrin is for those who are HER2 positive. It is posssible to be positive to both (ER/PR and HER2), positive for one or the other or negative for both.

When to start AIs can vary a lot depending on the individual DX and the Dr. For me, I started Femara (wasn't yet available in generic form - letrozole) a week after starting rads. As I had started rads a week after last adjuvant Taxol, it was 2 weeks after last Taxol. (Timeline - 4 neoadnuvant DD A/C, UMX 2 weeks after last neoadjuvant A/C, 3 weeks post UMX started 12 weekly adjuvant Taxol, 1 week after last Taxol started 25 rads and a week after starting rads started Femara.) So my TX plan was quite different than the vast majority will do but there is no 'One Size Fits All' when it comes to what anyone's TX plan will be.

Added: Request a referral to a LET (LymphEdema Therapist) for a baseline evaluation and education about the possibility of LE (LymphEdema) after any surgery (doesn't have to have lymph nodes removed for LE to develope). Also will give you information about what it Is and dealing with it in case you do develope it at some time in the future. Unfortunately, many/most Drs are woefully uneducated when it comes to LE.

burner

notverybrave- I am just about a month behind you, but almost the exact same diagnoses and treatments. My MO gave me the option of going on Tamoxifen since she felt that my cancer was largely driven by the HER2+. And that if I had not had a pCR, she would say standard of care says to go on it

I know it is a personal decision, but I just don't know how to make the decision at this point. I am leaning towards not taking it, but the guilt if I have a recurrence may be crushing. As it is, I am mentally and emotionally not doing well with what havoc treatment has wreaked on my body, so anti-hormonals is a tough pill to swallow. (Pun intended)

I am trying to find the study that indicate statistics about the benefit (or lack thereof) of Tamoxifen after neoadjuvant yields a pCR...

NotVeryBrave

Kicks - I've had a LE evaluation and am currently seeing a PT with that experience. I think that PT has a made a huge difference in how I feel and what I can do these days.

burner - Let me know if you find those studies! I go crazy with all the options. On the one hand, I wish everything was standard and there were no options. But on the other - we're all such individual cases.

Maybe somewhere down the road they will decide that those that have a PCR don't need surgery at all or any further treatment. Who knows? I just hate to risk some potentially scary SE's for a possible benefit. And I know that feeling of "what if" and worrying about kicking yourself later, too.

Kicks

Good! My LE does not limit me at all in what I do. Actually the more I do the better. My LET guy is an OT.

burner

NotVeryBrave- I haven't found the study yet... I think my MO is going off the NCCN guidelines here, and saying that since there was no evidence of cancer in my lymph nodes before or after neoadjuvant therapy and mastectomy, that endocrine therapy was "an option" for me...

https://www.nccn.org/patients/guidelines/stage_i_i...

I can't say that I've made up my mind for sure. My MO said that some women take it as a precaution against developing another hormone-positive primary cancer, but that she doesn't necessarily see it as a benefit in my case for guarding against recurrence of the original cancer. Who knows? Good luck with your own personal decision! I think I have another week to consider it...

NotVeryBrave

Hmmm ... I came across that same table the other day. With an initial tumor of 2.8 cm - guess that explains why they want me on the hormonal therapy.

Even when all goes relatively well, you can never feel like you're done. :-(