Bye Bye Tamoxifen - Shifting Gears

It's almost been a month since I said bye, bye tamoxifen and decided that although it's suppose to stop additional breast cancer, it was creating problems elsewhere - so I was complete and ready to be off it after less than a year of taking it.

I had spent quite a bit of time doing research and being the true forum voyeur to see what others were doing, what they were thinking and potential other paths.  What I learned is that "we" have such a great FEAR of being diagnosed with breast cancer again that most of us do what ever our medical oncologist has said is the "right thing" to do without questioning their wisdom or why despite additional studies and choices tamoxifen or the estrogen inhibitor of choice was chosen for you.

I also noticed that there are a significant group of women out there mixing and trying more holistic approaches with tamoxifen but not going off it because they are afraid not to be on it due to potential cancer.

What I know to be true is that even though I didn't want to take Tamoxifen, I did, and each time I read the full write up that came with my monthly prescription which outlined that the drugs results were:  7 out 1000 women who don't take Tamoxifen have reoccurring breast cancer, and "only" 4 out of 1000 who take Tamoxifen have reoccurring breast cancer. and it states that Tamoxifen decreases the chance of recurrence by 43% (but that is only 4 / 7) - but I was afraid to say no, and what else, but suddenly it was really bugging the shit out of me.

BUT, I kept hearing those voices in my head about doing "what is right" and I like every one else was afraid that if I went off it and got breast cancer again - I would be riddled with guilt, especially if it metastasized and I died and left my husband and child because I was being bull headed about taking the damn drug.  And for what ever reason I just couldn't get past the "potential guilt" and "fear" of being diagnosed again. 

AND, unfortunately or is it now fortunately, I am one of the ones that has side affects and "due to my genes" of having a sister that had early stage ovarian cancer at about the same age although no mainstream genetic test has verified anything - they (the doctors) recognized that the way the drug was reacting there was a potential to get ovarian cancer (by the way which is one of the side affects).

So after 3 pelvic ultrasound's, one D&C, some ovarian cysts that keep growing and potentially another D&C merely months after the first one - I decided (and of course conferred with a couple doctors and my husband and did my own research) decided that Tamoxifen wasn't for me.

So what's next?

Well as you know I didn't really like what the oncologist suggested, and it's not that I'm a gluten for punishment or anything, but I just kept thinking, is this the only way?  Would something be better?  How would I know?  Could I live with what ever decision I made?

The choices I've been pondering, in addition to the ones by my medical oncologist laid out are by the naturopathic that specializes in cancer came up with:

1. go off Tamoxifen and do nothing (a choice but not recommended)
2. go off Tamoxifen and do a full holistic cancer prevention protocol
3. go off Tamoxifen and go on an aromatase inhibitor
4. go off Tamoxifen, have my uterus and ovaries taken out and go on an aromatase inhibitor (potential initial suggestion by my oncologist)
5. go off Tamoxifen, go through a series of shots to induce medical menopause and go on an aromatase inhibitor (potential initial suggestion by my oncologist)

So I immediately went off Tamoxifen and have been sitting with what will I do?  My over active imagination has come up with all sorts of scenarios from death to full health.  And guilt over my choice felt like a huge cloud, sometimes very dark and antagonistic and sometimes quite nice wrapped in self love.

I kept hearing the naturopathic's words, "this is a spiritual, emotional and physical journey and there is no one right choice...you could choose any of these and either be diagnosed with some form of cancer or not...but ultimately it's important that you feel like you've made the right choice for you."

Then I realized what I was most afraid of is death.  And since being diagnosed with breast cancer and going through with the treatment plan, in the back of my mind fear of death was always there.  Knowing this is allowing me to come to peace with it.  I'm not saying that fear doesn't creep in, but I realize that I don't want to live my life coming from fear.  Or from ego which shows all being victims of my death.  At some point we all die.  I remember my dad after being diagnosed as terminal said - he had finally become comfortable knowing, and he lived his best life until then.

It is the self actualization that each of us gets to make the choice of how we want to life our life and more importantly how we want to feel about  it.  I choose to enjoy my life, my family, my husband, my child, my work, sharing stories, and listening deeply to what wants to be said.

Next post will be on the choice.

Have a good one. Michele Corey

Comments

[Marilyn D.]

I am where you are - for the second time. I am 48 and premenopausal. Almost 6 years ago I was diagnosed with DCIS and started tamoxifen. I had no really bad side effects. I did have hair loss, terrible leg cramps at night, and was an emotional wreck during withdrawal at my 5 year mark. Three months later I was diagnosed with a second primary cancer in the other breast. My gut always told me I would go through this again when I stopped the tamoxifen, and now looking at old MRIs, my radiologist cousin says she can see signs of the 2nd tumor. She believes the tamoxifen kept it in check. I recently had a bilateral mastectomy and had clear nodes. My oncologist and husband are insisting I go back on tamoxifen. I haven't filled the prescription yet, and not sure I will. But I do thank God for the tamoxifen keeping me healthy for five years.

[Barbara Keating]

Thank you for sharing-it means alot.