Anyone on Tamoxifen after double mastectomy and clean nodes??

Hi Tryinghard... did your doctor really prescribe 10 years of tamoxifen off the bat? Your diagnosis seems much "less" than mine (smaller tumor, lower onc score, older at diagnosis) and my ONC is still saying I'll be done after 5 years. Just surprised to hear they might be prescribing 10 to everyone? My ONC did say that I certainly could continue on another 5 years if I wanted to, but I just really don't see the point subjecting my body to increased toxicity being such an early stage and only maybe having a 1% benefit?

hi ladies,

just celebrated my 39th birthday. was dx with stage 2a BC last apr, had  bilateral mastec surgery with clean nodes, 4 sessions of chemo from may to jul and started on tam in sep. Dr has offered option to remove my ovaries. Am comtemplating whether to go for it, since it could mean me facing a new set of issues with menopause..

I'm in a similar situation....BMX for invasive carcinoma on one side and dcis on the other. My nodes were clean and I didn't need chemo or radiation. Since I'm premenopausal my oncologist recommended tamoxifen for 5 years. At that point I'll have blood work to see if I'm in menopause . More than 5 years on tamoxifen seems to increase risk of other cancers to an unacceptable level.

I've been taking it for two months now and I've noticed some side effects like heat intolerance and weird periods. I'm also tired but maybe that's the stress of the situation as well. I find myself blaming tamoxifen for everYthing which I'm sure isn't ac

accurate

Wlhockeymom: it seems with the knowledge we have now it is less risky to take the tamoxifen. I guess as research rolls on that answer could change or new meds could become available. I haven't had any intolerable side effects. The tissue expander bother me more than the tamoxifen to be honest

I'm also stage 1/grade 1, no nodes, BMX, and was told 10 years of Tamox. However, in 5 years, who know what new will be on the horizon. I'll ask for the breast index text in 2-3 to check and would perhaps change to AIs depending upon what else we learn and how Tamox. works for me. I haven't started it yet. Next week or so. Another MO appt next week.

Agreeing with Hercules -- TEs probably more bothersome than Tamox! At least here's hoping!!!! But TEs not going to be ten years worth of bother...

Hi Lokos:

Your breast surgeon is probably talking about the risk of local recurrence, which is typically quite low in patients with node-negative disease and adequate surgical margins after bilateral mastectomy. Please confirm it.

However, if you had invasive breast cancer (e.g., IDC, ILC), then there is an additional risk of distant (metastatic) recurrence.

Bilateral mastectomy is a local treatment only. With invasive breast cancer, it is possible that some cells escaped the breast before the tumor was removed. Tumor cells may have travelled to distant sites through the blood stream or the lymphatic system. This may have occurred even in patients determined to be node-negative. Surgery is not an effective treatment for cells that have already moved to distant sites.

Unfortunately, the presence of a few rogue cells or clusters of cells at a distant site(s) is NOT detectable by conventional tumor staging procedures (lymph node biopsy) or whole-body scans. To address the risk that such cells may persist and grow, leading to recurrent metastatic disease, systemic treatments like Tamoxifen are recommended.

In those with node-negative invasive breast cancer treated by bilateral mastectomy, the main benefit of Tamoxifen is in reducing the risk of distant recurrence. The benefit of Tamoxifen is proportional to individual recurrence risk. Therefore, do not hesitate to consult with a medical oncologist to request an estimate of your distant recurrence risk with (a) 5-years of Tamoxifen and (b) without Tamoxifen.

BarredOwl

I'm in for at least 5 years, probably 10. I highly suggest y'all at least try it. The majority of women have little or no side effects... most of us just never comment. I'm 9 months in and not one side effect- it's like a sugar pill to me. I'vE maintained my weight with little exercise. I feel 100% back to normal all on Tamoxifen. Tamoxifen reduces your recurrence rate by half on the oncotype score, so my percentage said 13%, which means without it, I'd be at 26% chance of recurrance. A huge difference!

Hercules, I lumpectomy first with idc, no nodes. My tumor was a bit shy of 1cm. But onco suggested 4TC with no radiation. I will be having BMX next month. Tamoxifen following surgery. My onco dx was 20. As for the tamoxifen, not sure if she'll want me on 5 or 10 years. Some have been saying it's now recommended for 10yrs

HI Kady, I know your post is from 2015 and it's 2019, so hopefully you'll find this. I'm just like you, I've done a lots of googling and came to the same conclusion. I had bilateral mastectomy in 2015, no chemo, no rad, my oncotoest was low, I'm 4 years on tamoxifen, no side effects, but I"m constantly questioning if I'm saving my life or filling somebody's pockets. I looked through a lot of studies tamoxifen vs placebo, tamoxifen vs Arimidex and I'm laughing at the results as well. Not only were the studies partially funded my the makers of the drug, but the difference is so minimal it could be also attributed to other factors like change of diet for example. When they did those studies and followed the women for 10 years, they didn't ask even once if the women changed their lifestyle. Wouldn't that be kind of important when you compare 2 drugs or drug and placebo? It seems to me as if the studies were flunked. My oncologist wants to switch me to Amiridex since Tamoxifen has stopped my periods, but I'd rather stay on Tamo or just nothing at all. I think my plant based diet could be just enough.

Hi,

Just read your post - my doctor is recommending

Chemo to be extra preventive (did a double mastectomy, it hasn’t spread in lympnodes) and then hormonal therapy but I think I may decline the chemo...I feel the hormone therapy might be enough..did you get any recommendations for chemo too?

Via, even if you don't have breasts, that doesn't mean your cancer is gone.  Science is discovering we all have cancer cells floating around our bloodstream and Tamoxifen is what will prevent them from getting our estrogen to grow.  When I started Tamoxifen I had mild join aches, but it disappeared after a few weeks.  I've been on for 3 years and have no real symptoms other than some mild hair loss (I had a ton of hair so no one can tell but me).   I suggest continuing on it if you can, especially if your cancer is highly estrogen positive. 

Hi Via,

It sucks but there are plenty of doctors who are good at medicine but not so good at education/communication. I wonder if your medical center has a nurse navigator or a social worker or something who could help find the information and sit and work through it with you.

Lisey's explanation matches my understanding.

Doctors know that even women with clear lymph nodes can get metastasis. That means that the cancer gets out of the breast not only in measurable ways through the lymph nodes but in other ways as well. As soon as they see invasive cancer (as opposed to in situ, like DCIS), they assume that it has gotten out of the breast and into the body.

Radiation/mastectomy are local treatment. They don't do anything for cancer that is already out and about in the body. (And mastectomy does always leave some breast tissue behind too).

Tamoxifen is the systemic treatment, like chemo, that treats the whole body. It seems to keep some cancer cells dormant. Like Lisey said, they don't get what they need to grow and become metastasized cancer. It's not 100%, some can take tamoxifen and still get metastasis or recurrence, but general estimates say that it improves your odds of staying cancer free by about 50%.

It can be a very hard drug to take for some people, though I'll second that you can't go too much by the early weeks. I'm struggling myself. I'd really like to stay on it though, so trying different brands and different times of day to take it.

No matter how poor of a communicator is, your doctor should at least be willing to sit with you and try to explain his rationale, or share resources with you so that you can make your own informed decision.

Good luck!