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kykeon22
08-31-2011, 08:15 AM
Hi everybody,

I have some doubts that are hunting me and keep me in a thoughtful state. Can I share them with you? maybe someone on this forum could help me in disentangling them or at least get rid of them.

Does aynone knows estriol vaginal cream? I have read that in USA it's not on the market, but here in Europe it is available. My mother used it to cure the dryness of the endometrium. Now I have a doubt about it being safe. On the leaflet accompanying the cream it's written clear as the light of the day that the cream shouldn't be used by patients suffering from a breast cancer hormone receptive. The cream was given by the gyno to my mom. We didn't trust her, because nearly 10 years ago she gave my mom hormones therapy to alleviate the symptomes of menoupause though my mother always said to her that her breast felt as swollen and hard as soccer balls the gyno always told her that the pills were safe and that she should take them. As a result five years later my mom was diagnosed with a breast cancer stage IV with nodules as large as 5 cm in the left breast and metastasis in the lung and in the liver. Strangely enough the cancer was strongly sensitive to the hormones. And my mother has given birth to 9 babies, she has been pregnat for nine times nine months. Theoretically she was safe from breast cancer because everybody knows pregnancy acts as a proteciont against breast cancer. But she was diagnosed with a very advanced breast cancer anyway. Luckily enough herceptin and arimidex did their magic on her tumor and she went NED. Then last year she changed therapy and went on tyverb and navalbine for a recurrence in the lung. She wasn't taking arimidex anymore. I was a little concerned because her tumor was strongly receptive to the hormones, i was thinking that we were not using all the tools available to kill the tumor. But luckily enough again the therapy proved its efficacy and she went NED. In May ot this year her PET Scan was clear and the tumor makers showed no activity of the tumor. We were all very happy and life was nice. Then my mom had little drops of blood coming down her vagina. Concerned and very reluctantly we went to the gyno (we were trying to avoid her). The gyno af first suspected a tumor of the endometrium which scared the hell out of us, but then furher analysis showed she was wrong. The endometrium was just dry because of lack of estrogen. She then gave us this cream containing estriol, a type of estrogen far less potent and far less harmful than estradiol, the hormone which on the contrary is hold as responsable for breast cancer. Of corse we couldn't trust her, and so before applying the cream we asked the onco about the safety of the cream. to me the onco appeared quite skeptical and maybe not wanting to contradict the opionion of a colleagues doctor reassured us about the safety of the cream. He said that the amount of estriol was very very very little, and that it would be absorbed locally not reaching the breast. To me he didn't appear much convinced of his own words, in fact he then added. "but don't use it too much, i mean, just one month, and then stop. See if the bleeding stops".

My mom applied the cream, she was feeling well, though sometimes she felt her breasts were slightly harder. My doubt about the cream never stopped, but I trusted the onco. She used the cream for about 2 months, from mid june to mid august when the last tumor marker test showed that the tumor was back. Scared from that she stopped the twice a week application of the estriol vaginal cream. The last Pet Scan showed a local progression of the disease at the level of the lungs. The onco changed the therapy, adding an antracycline and aromasin to the pills of the tyverb.
So why does he add aromasin now? why now does he think that we need to stop estrogen from feeding the tumor?

During our last meeting I told the onco tha my mom had stopped applying the cream because she was worried it had caused the tumor to grow back. He didn't answer directly, but told us that it was okay to stop with it, he appeared relieved that we had taken the decision by ourselves and then told us, almost insisted, that we should see the gyno again for a check. Though my mom doesn't feel the need for a check and she is scared and angry with her gyno to the point that she is pondering about seeing another gyno.

For my part I'm almost convinced that the estriol cream contributed to the tumor to grow back, though I cannot telll it for sure. The onco behevior seems to comfirm my suspects. I know that in this field there is nothing for sure, and that most of the time is just a trial and error procedure. I don't blame the onco, he thought that the estriol was safe which it wasn't. But I'm angry with the gyno. Why prescribe hormones therapy to alleviate the symptom of the menopause? The menopause is just a natural process of life. Why do the gyno feel the need to disrupt that natural process by giving hormones that by now are well known to be very harmfull if not perfectly well balanced? Human being has done without hormone therapy for millions of year and they have just done fine.That's crazy. That's illogic and very stupid.

snolan
08-31-2011, 08:34 AM
My onco suggested Replense, which helped me. I didn't have to use it often.
I feel once you have lost faith in a Dr, try another. It doesn't sound like the gyno is stearing your mom in the right direction.

hutchibk
08-31-2011, 03:25 PM
My Onc requires me to use Estring estrogen ring, and not Estrace cream. He believes the cream has too much of a systemic increase in estrogen. The ring doesn't.

kykeon22
09-01-2011, 01:49 AM
thank you for your advices and support,

we are going to push the gyno for some cream without estrogen, like replense.

snolan
09-01-2011, 08:51 AM
You can purchase replense at the grocery store.

Debbie L.
09-03-2011, 04:49 PM
A few comments on this thread.

First -- Rich, how do you make the quote/comment thing work? You must know some programming language? I participate in forums where I can get the quote boxes, but this forum is not one of them (mac/firefox).

Even the estring can cause transient elevations in measurable systemic estrogen, upon first use (the estrogen-starved tissue is an efficient sponge, apparently). The creams (estradiol, etc), IF USED IN TYPICALLY-PRESCRIBED DOSES, do increase systemic estrogen more than the estring. But the advantage to the creams (in my opinion) is that they can be titrated. You can use just a dab, rather than the applicator dose, for example. You can stop using entirely when things seem to be okay, and start up again (cautiously) as needed. For son-of-Ha's questions, I'd say it depends a LOT on the amount of cream used.

I tried ALL the options, short of the estrogen preparations. Replens may be fine for garden-variety menopause, but it was not nearly enough for the vaginal desert I experienced, caused by Arimidex.

It is, alas -- more than just lubrication. In the total estrogen starvation that comes with AI use, the tissue itself thins and changes -- becoming so-easily damaged that moisture/lubrication is only part of the trouble.

I don't have any answers, but I encourage those who are having issues to speak up. If we are not honest and upfront about this issue, how can we expect researchers to investigate and (perhaps) find answers to help us?

That said, son-of-ha raises the other perspective. Maybe there is not an answer to this issue that would allow us to have both a fulfilling sexual life, AND to control our cancer. At least not at this time. But if that is the case, that choice should (imho) be on the table. We should be told that this treatment might save our life, but on the other hand, this treatment might ruin our ability to participate in intercourse as we previously knew it. Probably most people would still choose potentially life-saving treatment. But it would be true informed consent, and we would be more eager to push for answers (treatment) that could leave us both alive and sexually-functional.

rondo
09-06-2011, 01:15 PM
ESTRIOL vaginal cream is not the same as ESTRADIOL cream. Estriol can be obtained with your doctor's Rx from a compounding pharmacy. The standard warnings are attached to all estrogen products although those relating to breast cancer really are only pertinent to estradiol, which stimulates breast cell growth. Estriol has not been found to stiulate breast tissue and so theoretically at least it should be much safer than estradiol for bc survivors. This is,, of course controversial, especially among docs who don't bother to differentiate between different estrogens but lump them all together. Estriol cream has been really helpful for me for vaginal problems. You can monitor your levels with lab testing and prove to yourself it isn't absorbed systemically. With my history I feel quite safe using this product and my doctor monitor me closely but it's a very personal choice.

Hopeful
09-07-2011, 06:49 AM
First -- Rich, how do you make the quote/comment thing work? You must know some programming language? I participate in forums where I can get the quote boxes, but this forum is not one of them (mac/firefox).



I am not Rich, but I can answer this question. The automatic quote response feature is not active on this BB. You need to write it in html.
Before the quoted language, you type the word QUOTE enclosed in brackets. At the end of the quoted language, you type /QUOTE, also enclosed in brackets. Hope this helps.

Hopeful

AlaskaAngel
09-07-2011, 10:10 AM
Not providing true informed consent is a very insidious form of lying. In regard to this issue, it is particularly vicious because it comes in the form of medical providers who are wearing the sheild of their license and educational qualifications, which provide the trojan horse for them to deal dishonestly and carelessly with intensely private matters under a trust relationship to begin with.

Given that it takes much organized developed research to come up with the treatments, is there any really good reason why, for example, they have not cared enough about the outcome to have adequately done the accompanying research for us to ameliorate the physical dryness problem? Or why, for example, there has not been research done to identify our personal pheromones prior to treatment so that possibly some manner of replacement to assist us afterward would be possible?

As suggested, they are unlikely to address this adequately unless WE make it a basic essential requirement for the development of treatments.

AlaskaAngel

AlaskaAngel
09-07-2011, 10:47 AM
I'm sitting here looking at the handout that was provided by my cancer center to me when I attended the orientation "pre-chemo" Q/A session this past year (as a postchemo patient now 9 years out).There are several Q/A's dealing with S/E's in the handout, but still not a single Q/A mentioning any potential sexual aspects, and nothing other than vomiting, fatigue, etc.

When I attended the session, the nurse conducting the session commented that perhaps my "situation" was uncommon.

I think I will create a redesigned identical-appearing Q/A handout, to include some Q/A's about these intimate issues, and send it back to the department conducting the session, with copies to ALL oncologists at the cancer center AND the psych support center that limits appointments to those no more than 2 years out from treatment, AND to ALL the OB-GYNs connected to that hospital.

Anyone who might have similar concerns might try doing the same.

A.A.