To Tomax or not to Tomax, that is the question...

wonderfullymade · April 2011

High risk 37 year old with 40% risk factor. Onco says he highly reccomends tomax for me and mri and mammo's ulternating every six months. I am having a fibroadenoma removed soon and have a couple of thickened areas under close watch. Looking for feed back on the tomax. I am finished with having children. I have two boys with autism and am hopefully fostering another special needs child in the mear future. I just am not sure whether or not to ake the tomax...need your input ladies:)

Anonymous · April 2011

I am high risk due to the combination of LCIS and family history of ILC (mom). I've been doing high risk surveillance for over 7.5 years now--alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months; took tamoxifen for 5 years and now have been taking evista for about 2 years. I tolerate both meds pretty well with minimal SEs, mainly hot flashes. My risk level is somewhere between 37% and 55%, they're not sure. I'm not interested in doing PBMs at this point, so taking the preventative meds is very necessary for my situation. My scans have been good, so the meds are working for me. Not a choice for everyone, but the meds and the scans give me peace of mind. Just be sure to get a yearly transvaginal US while on tamox to monitor both the uterine lining and the ovareis.

anne

SarahsMom · April 2011

High risk here as well - somewhere between 37 and 47% lifetime. I have focal asymmetry so the risk is much higher for the breast with the 50-75% density than the other which is clear, so I try to keep that in mind in terms of risk.

I am not sure on tamoxifen, it's an option for me, as well. My husband is away on business for a year, so I may start when he comes home. I've also considered a preemptive strike with a mastectomy on the left side, but not sure.

I rolled the dice with my ovaries - had an unexpected hyster last spring and had to decide. I weighed whether to take them out and go into early menopause and have to take estrogen, or keep them and let nature proceed at will. There is also ovarian CA in my family, paternal grandmother died from in in her 60s. In the end, I decided to keep them. My doctor presented evidence that a hysterectomy reduces your odds of ovarian cancer by 1/3 so I factored that in, as well.

We'll see if that was a good gamble or not. By the time ovarian is detected, it's often too late. 62% of women who are diagnosed with ovarian are already stage IV. Sometimes I think taking the ovaries and eliminating that issue, then rolling the dice with breast cancer and me being in the 6 month diagnostic club anyhow would have been a better decision.

Either way, whether we take tamoxifen, have a preventive MX, keep ovaries, eat organic, drink or don't drink soy milk - whatever - we just have to be at peace with our decisions and make a pact with ourselves not to second guess or beat ourselves up if something rears its ugly head.

Anonymous · April 2011

I was dx. with LCIS 6 years ago. My BS suggested I see an oncologist to explore Tamoxifin (I was pre-menopausal at the time and then, it was the only drug available). I tried it and wanted to stay on it, but it made me feel like I had a low grade flu and needed a nap every day. So, after consulting with the oncologist again-nothing else available at the time-I went off of it.

I will say, I know several women that have been on it and did NOT have any of the symptoms I had and really have stayed on it for some time. One woman was in the original study before it was FDA approved and another has been on it for about 10 years now. Her BS wants her to stop it and she doesn't want to. So I don't know that my experience is that commen. And maybe if I had stayed on it longer I would have gotten used to it.

Now, 6 years later, more excisions that confirmed LCIS, dense breasts and a family hx. have led me to a PBM rather than close surveillance, but that's a very personal and difficult choice.

dansbetta · April 2011

Hello

. Most importantly, the thickened areas under the supervision of a physician. The important thing now is not lazy, and in time to pass all examinations. Everything will be fine. Live and enjoy life. And about their diseases try not to think about. All of our thoughts may be material.

dansbetta · April 2011

And of course tamoxifen in this case is required .. Tamoxifen helps prevent cancer. The main thing is not self-medicate, and is under constant medical supervision while taking this medicine. Tamoxifen has many side effects, and it is a hormonal drug.

vmudrow · April 2011

When I was diagnoised with ALH the oncologist said that Tamoxifen was the preferred treatment. He said most of his patients don't have any side effects from it. I however found some ladies on it called them and they hated being on it -but felt they couldn't go off because they had breast cancer. I chose PBMX - now no Tamoxifen, no MRIs, my risk went from 40% to less that 5% - I see the surgeon once a year. Good luck - it's a hard decision. Maybe you could try Tamoxifen and see how it affects you - I was just done with all the worrying!!

Hugs, valerie

Rennasus · April 2011

I have been on tomox for 1 month. Oncotype 16, Stage 1B, grade 1, and I had BMX, so tamox is the only treatment I need. Side effects wax and wane. Initiallly I had increased thirst and peeing, insomnia, moodiness and mild hot flashes. Those have all since subsided. Now my problem is dry skin!

I think it takes the body time to adjust to the hormonal changes Tomox brings. Give it time. It is a powerful weapon against nasty cancer cells. I am embracing it!

To Tomax or not to Tomax, that is the question...

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