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Recurrence Question Recurrence Question

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  #21  
Unread 05-11-2004, 09:43 PM
Recurrence Question

Hi Samie and Jclmsmith,

HPV is human papillomavirus, a virus that is thought to be responsible for anywhere between 80 and 99% of cervical (but not endometrial) cancers. It is believed to be primarily sexually transmitted. There are over 70 types of HPV, and some cause cancer while others don't. As for the paps, follow-up paps every 6 months is fairly common after a hyst.

Sorry I can't help with other questions, as I'm a cervical cancer person rather than an endometrial cancer person. Good luck to you both .

Beth
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  #22  
Unread 05-12-2004, 03:29 PM
Recurrence Question

Hi Beth,

Thanks for the info. I had not idea what HPV meant. Shows how dumb I am!

Thanks again.
  #23  
Unread 05-12-2004, 04:00 PM
HPV

AnnaBee-

you are not dumb at all! Everyone knows that the smartest people ask lots of questions .

Beth
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  #24  
Unread 05-13-2004, 10:56 AM
Recurrence Question

I just want to say that I love my Dr., and appreciate him more every time I see him and/or read about hystersisters who have had less than ideal experiences.

My doctor says (again, talk to your own doctor and make decisions you are comfortable with)
endometrial cancer is most likely to redevelop in the vaginal cuff. A distant second in terms of likelihood is in the lungs.

He also said that he thought that given the stage and grade of my cancer (1a1) its type (endometroid adenocarcinoma: there are other kinds of "endometrial adenocarcinoma" that have higher risk of redevelopment) and my age at the time of my hyst (31) the risk of osteoporosis and its complications were probably higher than my risk for additional development of endometrial cancer and hormonally driven breast/colon cancer, as long as we are careful to keep the dose as low as possible. Women my age are supposed to have some estrogen, after all. There are risks when hormone therapy is used after having had a hormonally driven cancer. He agrees, as does my compounding pharmacist, and as do I, that my quality of life is improved enough to warrant taking the risk.

I hope that makes sense...

On a tangentially related note: I had my 1 yr post-hyst checkup today, and he couldn't find anything unusual! No granulation or funny bumps anywhere! Yay! (Now I just wait for the lab work...)
  #25  
Unread 05-13-2004, 11:27 AM
Recurrence Question

Dear Hammi,

Thanks! If you don't mind me asking what dosage are you on? I'm 40 years old and had my two hysterectomy's this year. My Onc. put me on 0.625 Premarin and said it was the most common dose. I see him again in three weeks and I have already decided to ask him to decrease the dose. If he wants me off of it in six months I thought it would be better to "wing" myself off of it than D/C it all at once. I am willing to stop the Premarin to see if I can handle it - we never know until we try it right?

I too also love my doctor and have the world of trust in him. We are different as my cervical adenocarcinoma was in my cervix but I had the same invasion as you 1a1. It's hard isn't it waiting on lab reports? I hate the wait as I have always said waiting is the hardest.

You are in my prayers and thoughts,
Donna
  #26  
Unread 05-13-2004, 12:30 PM
Recurrence Question

I apologize in advance for the length of this post. I know that hormone therapy for cancer survivors is a hotly debated topic, so I want to show why I am doing what I am as far as hormone replacements go.

I'm actually on compounded hormones. That way, I don't "lose" part of the hormone to the digestive process.

I'm on 25 mg/day progesterone and 1.2 mg bi-est (a combination of estradiol and estriol that is supposed to be less likely to cause cancer redevelopment) Both are in a cream base that I apply to my inner arm and/or my inner thigh. Progesterone goes on at night with part of the estrogen, and the remainder of the estrogen goes on in the AM.

The good thing is that both the progesterone and bi-est are bioidentical. Hopefully this will avoid some of the problems found in the study of Prempro last summer, since both forms of estrogen in bi-est are nothing like horse estrogen and the same as my body would have produced if I had ovaries, and the progesterone has a different chemical structure than the "pro" part of Prempro, again the same as what my own body would have produced. The progesterone was added in the hopes that it would take care of 3 primary problems: 1) total absence of anything resembling sexual function 2) daily crying jags and 3) the general sense that something was fundamentally out of whack.

The mixed blessing of compounded hormones is that you can infintely "tweak" your dose, so that you get what is right for your body. The "tweaking" is good, the "infinite" can be frustrating. (I've been working toward a balance for 5 months now.)

Again, as always, check with your own doctor and make decisions that are right for you and your situation
  #27  
Unread 05-13-2004, 03:53 PM
Recurrence Question

Hammie,

Don't worry about being lengthy, 'cuz you just gave me a world of information.

I ran across the word bio-identicals somewhere on this web, and I was hooked. I wanted to find more info. I finally found a book that I have been reading and re-reading about bio-identicals, and finally after much searching, found a compounding pharmacist that gave me some names of DR's that worked with him. Long story short, I have seen the DR, had blood work, and am now waiting on the results. This DR told me no estrogen, and maybe just a very low dose, but with progesterone, and she mentioned estradiol and estriol. She told me that my endometrial ca was probably from too much estrogen in my body, and since I am at a high risk for breast ca, she really did not recommend any estrogen at all. But here again, we will have to see what estrogen level I have in my body.....I may need some. The hot flashes are bearable, but its the depression that gets to me. I find myself weepy at anything, and I don't want to come home at all. The compounding pharmacist also suggested evening Primrose for my depression. Have you heard of that?

I did not ask my surgeon about the bio-identicals, and am beginning to wonder if I should mention it to him. After my surgery he told me he didn't want to put me on anything, but yet I feel my body is depleted of "something", if you know what I mean.

I'm sorry if I seem scattered brain with all of this. There is so much information, and it seems I just can't grasp it all.

Thanks so much for the info, and keep up the good work.
  #28  
Unread 05-13-2004, 03:58 PM
Recurrence Question

Its me again, Hammie, and I just wanted to say congratulations on the 1 year mark! And you're right, waiting on labs is too much, but something that we have to do.

I was graded as a 1a endo and my DR said that for my age (45) and the type of ca and the grade I have a 3-5% chance of recurrence, and just like you said, if it does recur it will be in the vaginal cuff.

Thanks again.........
  #29  
Unread 05-14-2004, 10:03 AM
Recurrence Question

You're not scatterbrained, it is confusing. There is also a lot of conflicting information, which makes it difficult to make a decision!

I think I do know what you mean by the vague notion that "something" is missing. If you haven't talked to a compounding pharmacist, you might consider it, if for no other reason than the information. (You may have to pay for the consultation.) My pharmacist gave me a list of about a million questions, and I rated how bothersome particular symptoms were, as well as creating a list of symptoms that are the most bothersome. From those questions, she was able to recommend a starting place for hormone treatment. Make sure that you tell him/her that you are a cancer survivor, because that does fundamentally affect some of the considerations. (My sense that something was fundamentally "out of whack" went away after we added progesterone.)

I have heard of primrose and other herbals for some of the side effects of surgical menopause. However, it is generally considered to be a good idea to only change one thing at a time. For example, if you change your hormone dose and add herbal remedies, you never know what it was that made the difference. Then, if you need to adjust something, it is harder to know what to change. The down side of multiple changes at a time is that if you have a bad reaction to something, there is no way to figure out what you reacted badly to, except trial and error. My pharmacist recommends 3ish weeks to adjust to any change in "the plan".

BTW- estradiol and estriol are forms of estrogen. Those are the same 2 that I'm on. (There are 3- estrone is the 3rd) I seem to recall that some women have estrone added to their compounded estrogen mix. However estrone has the reputation (I seem to remember) for being involved in cancer cell development, which is why I don't have it in my mix.

Another confusing thing- all of the hormones, be they progesterone, testosterone, estrogen what have you, can switch into others. For example, progesterone can break down into testosterone as well as estrogen. The various forms of estrogen can convert around. ("Cascading" is a term that gets used, and I think it refers specifically to the process of one changing into others.)

In case you couldn't tell, when I was in school, I was the geeky kid who knew all of the weird stuff about where things come from, and odd trivia that make me a ferocious couch competitor for shows like Jeopardy and Who wants to be a millionaire. I'm also an academic, which means I am a research junkie.

As always, check with your doctor, and make the decisions that are right for your body and situation.

Hammi
  #30  
Unread 05-14-2004, 02:49 PM
Recurrence Question

Hi, Donna and AnnaBee--

Boy, did this thread take off! I'm on vacation in Las Vegas and have only been on the computer every few days or so to check email. (I'm out here celebrating the 5th anniversary of my endometrial cancer diagnosis which was May 12th).

It doesn't look like anyone else has answered your question on how long it took to level off hormonally after surgery. My gyn-onc would not allow me to take any hormones whatsoever because of the extent of my endometrial cancer. I was at an elevated risk of recurrence because of a number of risk factors.

I would say it took me a good year to get back to "normal," assuming I was ever normal before surgery and cancer. I think there was a tremendous shock to my system from surgery and radiation. I was thrown into surgical menopause by the surgery. I also think receiving a cancer diagnosis was a double whammy to my psyche. I did not sleep for the better part of six months, was anxious and had difficulty concentrating (probably from lack of sleep).

I ended up having to take something to break the no-sleep cycle, and was put on an anti-depressant, Remeron. However, I still was having problems sleeping, so I was prescribed Ativan, an anti-anxiety drug, to take before bedtime. This enabled me to finally begin sleeping regularly again. I slowly weaned off the Ativan over the course of several months. I also stopped taking the Remeron shortly after beginning the Ativan. Since then, I've been fine, take no medication whatsoever, and now I sleep like a newborn baby every night!

I hope this helps to answer your question.

Take care,

MoeKay
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