It was my second visit to the oncologist, Dr Deven Moodley, today.
The aim of the discussion was to establish whether or not I should start taking Tamoxifen.
I decided about a month ago not to do chemo and now I need to think about long term treatment to reduce my estrogen levels.
I had specific questions that I wanted answered. If Deven had better answers than mine, I would consider his treatment protocol.
His plan was that I would take Tamoxifen for 5yrs. Tamoxifen blocks estrogen receptors on all estrogen sensitive tissue, as well as breast cancer cells that are either still in the breast area or have moved to other parts of the body.
Estrogen stimulates cell division of estrogen sensitive cells so blocking estrogen reduces breast cancer cell division.
Once the cells are not getting any estrogen, they send a message to the brain saying 'We are not getting estrogen so make some more'.
The body then makes more estrogen and after 2 years of taking Tamoxifen, a woman usually has very high levels of estrogen circulating in the blood that can cause blood clots, osteoporosis, and uterine cancer.
After 5 yrs of being on the drug, the risks out way the benefits, so it is advised that women stop taking it.
There is a large study that has been going for about 12 years where researchers have followed the same group of women (about 700 odd) with all the variations of breast cancer, and various allopathic forms of treatment (NSABP).
From the study, it can be seen that there is a 'decrease in breast cancer recurrence' benefit that increases from year 1 to year 5 of taking Tamoxifen.
However, if a women dies from a side effect of Tamoxifen, ie. other than breast cancer, she falls off the study. If she gets healthy enough to prevent a recurrence, she also falls off the study.
My questions to Deven were the following:
HEIDI: I am 35 yrs old now. I have not been through menopause. After 5yrs on Tamoxifen, I have to stop taking Tamoxifen. I will then be 40yrs old. If, and when, my ovaries start up again, they may still produce significant amounts of estrogen. I may only go through menopause at 45yrs old ie. 5 years after stopping Tamoxifen. What was Deven's plan for after 5yrs on Tamoxifen?
DEVEN: The plan was to induce early menopause now with Tamoxifen to block estrogen receptors and another drug to stop my ovaries producing estrogen. After 5yrs, he would just reverse this state to prevent any long term side effects of the drugs. He did not have a plan beyond that - I would be on my own.
HEIDI: So if breast cancer did not get me in the next 5-10 yrs, a side effect of Tamoxifen or playing with my endocrine system, very well may.
HEIDI: If I took the Tamoxifen, would Deven monitor my estrogen levels using saliva, blood, and urine tests during the 5 yr period?
DEVEN: No, he would not do any tests at all, not even blood tests - he would only treat side effects of the drugs.
HEIDI: During this 5 yrs, and after I have stopped taking the Tamoxifen, how would Deven detect a metastasis?
DEVEN: He would not scan for metastasis periodically (thereby detecting any early on) - he would wait until I got symptoms (which is usually quite late).
HEIDI: I asked Deven whether he would be willing to review my periodic saliva, blood, and urine tests done by Dr Craige Golding over the next year while I tried more natural treatments? Could Deven tell me whether there were any warning signs I should be altered to?
DEVEN: He agreed to this.
I left Deven's office in a better state than when I went in. I decided not take Tamoxifen, at least not for the next year.
I want to try more natural treatments first - ones that build up my immune system, block estrogen receptors naturally, aid the breakdown of strong estrogen to weak estrogen in my liver, and that reduce my cortisol levels and bring me back from a state of burnout.
Even if I had however long left to live, I don't want to live my life enduring side effects of a drug that does not have all the answers.