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Old 07-26-2007, 09:35 AM   #1
suzan w
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Location: Naples FL
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Unhappy

...my oncologist said "no" to estrogen in ANY form for me...
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 07-27-2007, 05:40 AM   #2
dlaxague
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Estrogen, more than just cream - should I start a new thread?

There have been some interesting articles recently about estrogen's effects on breast cancer. In JNCI, apparently there's an editorial by Don Berry and Peter Ravdin and they say (quoted from Eureka news)

" In an accompanying editorial, Donald Berry, Ph.D., and Peter Ravdin, M.D., of the University of Texas M. D. Anderson Cancer Center in Houston suggest that hormone therapy itself may not cause breast cancer. Instead it could promote tumor growth while its withdrawal may slow or stop it. They add that using individual-based—in addition to population-based—data would give researchers a better picture of relationship between hormone therapy use and breast cancer."

Then Craig Allred and someone else have an article called "The Estrogen Paradox", here: http://www.medscape.com/viewarticle/559611 .

The first sentence of that article begins: "A randomized controlled trial published in 2006 demonstrated that postmenopausal women who underwent hormone therapy with estrogen alone for a mean of 7.1 years unexpectedly had a decreased risk of breast cancer.<SUP>[" </SUP>
<SUP></SUP>
<SUP>Go figure! They go on to say that estrogen may promote tumor cell apopotosis (death) in some instances and fuel growth in others. (I'm having trouble with font format after the copy/paste. 'Hope this is legible. Anyway, read the rest of the article. I had trouble understanding why they think this paradox is possible, but I do not doubt that they know what they're talking about and that this is at least a plausible theory to explore. </SUP>
<SUP></SUP>
<SUP>So much that we do not (yet) understand. It makes it hard to make these decisions, but I agree that this is a very large qol issue. Brenda, as for the "use-it-or-lose-it" theory, my experience is that it only makes things worse, because the tissue keeps getting damaged and doesn't heal very well. That may work for garden-variety menopausal atrophy but I don't think it's enough to combat the conditions that go with AI use, at least for some of us. I'd want to see studies of women on AI's that showed that this approach worked - and I don't think that there are any. </SUP>
<SUP></SUP>
<SUP>Debbie L.</SUP>
<SUP></SUP>
<SUP></SUP>
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3/01 ~ Age 49, occult primary announced by large axillary node found by my husband. Multiple CBE's, mammogram, U/S could not find anything in the breast. Axillary node biopsy - pathology said + for "mets above diaphragm, probably breast".
4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
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Old 07-27-2007, 07:08 AM   #3
Hopeful
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Debbie L.,

Here is a link to a news release from December, 2005, regarding the discovery by Fox Chase Cancer Center researchers (Philadelphia, PA) who discovered that some bc cells once fueled by estrogen can be killed by the hormone: http://www.brightsurf.com/news/headl...he_hormone.htm

I have read some papers discussing estrogen deprivation and the ability of some ER+ bc cells to adapt to extremely low ER levels via hypersensitivity. The researchers in the above article took some of those cells, re-exposed them to estrogen, and killled them by doing so.

Our hormones fluctuate throughout life; it is not practical to assume that they will not continue to do so in light of intentional manipulation via deprivation. We need additional studies and better monitoring so that our medications can be constantly adjusted, the same way diabetics constantly monitor their sugar levels or those with hypertension constantly monitor their systolic blood pressure for medication adjustment. This is not a static situation.

Back on the main topic, I saw my onc yesterday and told him about my gyn's plan. He rolled his eyes at the weekly blood draws, and told me he thought I would "do just fine." I am anxious to get started on the treatment, while I still have all this Herceptin in my system (which looks like it will still be there, in varying degree, for the next 22-26 weeks). The fact that researchers found that reintroducing estrogen after a prolonged period of estrogen absence was helpful, rather than hurtful, to some bc cells has given me more confidence about the treatment.

BTW, my gyn was also telling me when I went to see her a year ago to treat VA pre-bc to keep having sex, to promote blood flow and keep the tissues from retracting further. I have read some papers on this, and apparently, women who have more active sex lives post-meno have less VA. I am wondering if this is a chicken and egg king of thing - do they have less VA because they have more sex, or do they have more sex because they don't have VA?

Hopeful
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Old 07-27-2007, 06:25 PM   #4
Becky
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Hopeful

I wanted to write this to tell everyone my experience with vaginal atrophy. I was hesitant to do this at first because I know that everyone really takes into consideration the things that I say and do. I am not 100% entirely certain of topical vaginal estrogen preparations but I did do my research - there's just not alot out there.

As many of you know, about 2 years ago I got an oophorectomy for at least 1/2 dozen reasons. A few weeks later, I started Arimidex. After about 2 months, I began experiencing UTIs and vaginal infections (both yeast and bacteria but not concurrently - I would get a bacterial from the ping pong effect of UTI/sex (or trying to)/vaginal). Antibiotics for the vaginal/bladder would cause vaginal yeast infections. I think you get the picture. I wanted to have sex and had no dryness issues but the lining was so thin that it would get damaged regardless of lack of dryness. In February, right before a well planned and alone with my husband only vacation in the Caribbean, I got another bladder infection. When I returned, I had a yeast infection again. My gyne recommended Premarin cream. 1/4 of a tube 2X per week. I started immediately. I contacted my onc (we "talk" on email) and did not hear back from him. I figured, if he said "no way" then I would stop as I only took one application. I felt the effects immediately since my vagina was so thin and damaged. My onc wanted me to use estring instead. He hadn't gotten back to me for 4 days because he was at a QOL conference where the safety of estring was discussed. I switched over. At 6 weeks we tested my estradiol level and it was the same as 6 months prior (I was in such agony I had him test it because I at least wanted to know if it was low). I am much better now. I still get yeast infections (not alot but it is a side effect of topical vaginal estrogen preparations AND I was plagued with them in my late 20's and early 30's) but I have not had a UTI since that February vacation (got a great tan though since Cipro warns to stay out of the sun and would you in that situation?!)

The estring is not perfect but even my gyne says my vagina is healthy now (since my annual pap versus all the times I went there because of infections and atrophy). I do know the risks are small but my gain is great as frequent and recurrent UTIs can cause future bladder cancer. I also had a uterine scan to make sure the estring isn't causing any problems there and all was well.

I probably should have shared this before but I wasn't sure what to really do. Have a great weekend. We are having a HUGE sweet 16 party for my daughter tomorrow night and I just finished making trays of ziti.

Love to all
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 07-27-2007, 07:29 PM   #5
Hopeful
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Thanks Becky

Becky, thanks for sharing your experience. I have been researching this issue since mid week, and have found that doctors are often more comfortable with prescribing topical estrogen therapy for bc patients than patients are with doing the therapy! As you point out, it is not just a QOL issue - repeated infections and irritation can lead to worse problems down the line, or, as with me, necessary cancer screening can't be perfomed because the doctor can no longer insert a speculum. This is another risk/benefit analysis, where it is quite possible for the benefits to out weigh the risks. My gyn intends very close monitoring to start, which gives her comfort and me the confidence to start treatment. As long as we remain under active supervision by our doctors, I think there are adequate fail safes in place for those who want to try this approach.

BTW, happy birthday to your daugher! Have a blast at the party - the ziti sounds mouthwatering right about now.

Hopeful
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