Starting Tamoxifen

We met with the oncologist yesterday to talk about the next step in my treatment plan with chemo off the table.   I was still worried about whether or not we were making the right decision about chemo based on some stuff I saw online about the Oncotype results being an "average" risk of recurrence but how a younger woman's risk could be much higher.   (Craig tells me I need to stay off the internet!)   Anyway, I brought this up with Dr. E (who was described as one of the more aggressive doctors in her practice) and she feels very strongly that we are making the right decision.    If I did have chemo and there was some sort of complication which landed me in the hospital, she would in no way be able to support giving me the chemo in the first place.   I feel better now and I am totally convinced we have made the right decision.  I got a copy of the Oncotype results and the 5% risk is after 5 years of Tamoxifen.  Chemo would only lower that to 4%.  I can live with 5%!

She wrote my prescription for Tamoxifen which can have the following side effects:

• hot flashes
• vaginal discharge
• vaginal irritation/dryness
• mood swings, which can lead to depression - Craig is in charge of looking out for this one because I won't even realize it.    I already have mood swings according to Craig, so he has a hard job!  ;)
• weight gain, up to 10 lbs - SO not happy about this one after my recent 20 lb weight loss, esp because I have put a few pounds on in the last few weeks.  I need to get back to watching what I eat and stop snacking.  That will get easier when I am back at work and not home all day!
• blood clots and stroke - less than 1% chance of this
• uterine lining issues which could lead to uterine cancer - less than 1% chance of this

Tamoxifen will NOT put me into menopause although my menstrual cycle might get messed up, more due to the stress of what I have gone through rather than the Tamoxifen.    I have to be VERY careful not to get pregnant while on Tamoxifen.    The label comments that pregnant women should not even handle Tamoxifen pills - the dust from it is very dangerous, even to inhale it.   (This is totally fine with us since the 2 children we have are enough for us.    Well, I am fine with it most of the time.   I know we don't want anymore kids but it pisses me off that cancer has taken away any possibility of another child.   I wish it were just our decision.)

Whatever side effects I will have should start at the 3-6 month mark.  I'll see her in 8 weeks for my first follow-up appointment.  She did examine me yesterday and says everything looks good and I am healing well.   She might send me for some physical therapy after I get my implants to make sure I get all my range of motion back in my shoulder area.  It has gotten way better but I am still stiff.

In case you are curious about Tamoxifen and how it works...  it is a SERM or Selective Estrogen Receptor Modulator.  My specific type of cancer cells have a protein to which estrogen will bind and cause the cell to replicate.   The Tamoxifen will bind to these receptors but not allow them to replicate.   There is not room for estrogen to bind to the cells with the Tamoxifen there.   Therefore, the cancer cells are eventually killed off by my immune system.    I will likely take it for at least 5 years but there are other drugs I might switch to which we will discuss later.

We quickly discussed whether or not I should have my ovaries removed.  She wants to wait before doing anything about my ovaries since ovary removal causes sudden and rather harsh menopause.  I am okay with avoiding that for now.

For now, she said to get back to living my life and to do the following:

• eat a diet low in fat (which I generally do)
• get some exercise (which I need to be better about)
• try to live a lower stress life (which I also need to be better about)
• get an annual physical (which I always do, except for our 3 years in Finland)

As for future cancer risks, there have been links shown between breast, ovarian, uterine and colon cancer.   There are no real screening tools for ovarian and uterine cancer but I maybe should get a baseline pelvic ultrasound in the near term (to be discussed with my gynecologist in July).   As for the colon, she would  not recommend a colonoscopy now but maybe a few years earlier than normal - say 45-ish.    My breast surgeon will teach me how to do self-exams on my new breasts after I have the implants as I do still have some breast tissue left.  I WILL be good about doing those self-exams unlike my prior history of never having done them.

So, for now, I consider myself to have won the cancer lottery.   My cancer was very non-aggressive and was caught very early. Yes, I still had cancer and had to face all the uncertainty and worry up front but now I can get back to living life.   There will always be that worry in the back of my mind about recurrence but I will do my best to keep that voice quiet and far away!

Tomorrow, I have my hopefully final expansion with the plastic surgeon.    Wish me luck as I am hoping not to repeat my performance at the first expansion three weeks ago!