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Jul 2, 2009 07:38PM Rachel_BC wrote:
Trish- I misunderstood/misread your post about the nurse not understanding you wanted to discuss whether to also add the ovaries to this surgery, I thought your GYNO was not taking time for you. Yeah, that's the kind of thing that makes me less enthused about signing up for an ultrasound- those cruelly insensitive staff members. I know how long the wait is for the mammogram, if I had to wait like that for the water drinking sonogram...and since none of the docs wanted this... I figured fugetaboutit, it will be what it will be. Oh and my shrink gave me a tip about the ultrasounds, she said not to drink all they say, just enough to feel full. I can drink more at the office if its not enough. Yeah!
OK the Tamox SE's, this is very ACS...
The Breast Cancer Prevention Trial
A quick search on the ACS site brings up loads on the Breast Cancer Prevention Trial, way too much for this post, as I probably already screwed up the fonts. But here's one summation from the ACS page:
"Does tamoxifen have other possible side effects?
Like most medicines, tamoxifen causes side effects in some women. The side effects most often reported by women in the BCPT study were hot flashes and vaginal discharge. There were other side effects, but these were no more common in the women who took tamoxifen than in the women who took placebo. They included:
- vaginal dryness, itching, or bleeding
- menstrual irregularities
- loss of appetite
- nausea and/or vomiting
- weight gain
- severe tiredness (fatigue)
Treatments that could reduce or do away with most of these side effects are available."
When I read that, it really didn't help me, even the " these were no more common in the women who took tamoxifen than in the women who took placebo"
part... it wasn't until I looked at the actual figures in the first link... I saw all these women with these side effects and was freaking, until I saw the figures of the placebo group right beside them... and they were the same. It feels like they are dismissing me out of hand when they say "you'd be having those side effects anyway at your age", but when I see the data from 13,000 women proving the point, it really helped me!
Coincidentally, when i was doing the search on the BPCT on ACS, one of the links was:
That's one of the cousin drugs for Tamoxifen that's not an AI, Raloxifene. I remember my ONC brought that up, and one other I can't remember. I don't remember much about it, just that it was a cousin of Tamoxifen.
I also didn't know you had the hot flashes at the start and then they went away. That's also what everyone reports and what I am hoping for, and why I am waiting (with my ONC's approval) for September to start Tamox. It's so damn hot already and I have to lose some weight (even though statistically the weight gain is no more than placebo), my hope is that I will start as the weather gets cold, be more comfy with hot flashes during the winter, and hope they'd subside by next summer. I was totally bummed when he said I'd just as likely still get my period on Tamoxifen. Well, at least it will be sluffing off cells.
The part about taking a break for a couple weeks is totally not ACS. That's totally BC.org. I told my ONC about it and he said if I have a problem I could try that. Helena is one of the canaries in the coal mine there, she's had good success so far with her break. Everyone I read about who tried it did great.
Now that I know you and your GYNO are comfortable with the hysterectomy, I am with you totally on wishing it a Bon Voyage, ta ta, farewell, and don't let the door hit it on the way out. Buh Bye.
I am clueless on the part about whether to take the ovaries at the same time, so I will keep my mouth and typing fingers shut there.
A question... a lot of people talk about what % ER+ they are. I don't know if I ever saw anything like a percentage for my hormone positivity? I just know I am strongly both ER and PR positive. What test shows the percentage?
2 more things... have you talked to your ONC about Zometa?
and did you see this cool presentation from the head of Breast Cancer at Sloan Kettering? YOTH posted it (from DDLat) and it's really wonderful. Made my day.
For Heidi Ho & WendyV ... I am doing all I can to show I appreciate my life, my kid, the whole shebang OncotypeDX 17 No Chemo, Lump & RADs & Tamoxifen & Dark Chocolate... soon ZometaDx 1/26/2009, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-