endometrial cancer - Page 3

Toots192 · 07-27-2009, 09:20 AM

So sorry Christina. I'm praying for you. Please let us all know how it turns out.

dlj1972 · 07-27-2009, 01:02 PM

Quote:

dlj1972- my thoughts are with you. Have you gotten your results yet?

No Christina, I haven't received my results yet. My gyno said that he'd phone them through but not to stress if I don't hear from him (easy for him to say!!). Anyway, I thought I might give him a call tomorrow to see what he can tell me. I'll let you know as soon as I know.

Thanks for your kind words and thoughts.

reggyosu · 07-28-2009, 12:18 PM

In my experiences with test results and biopsies it's taken about a week for results. So if it's past that time frame, I'd call. My brother in law is a doctor and after every test he began pushing me to call for results a day or two before that week mark and they were always in. My MRI and CAT Scan were actually back that same day but I had to call for the results.

finallymrsvb · 07-28-2009, 12:49 PM

Just wanted to say that I have been reading through this thread and am keeping you in my thoughts and prayers. I hope that you get some positive news and until then, stay strong.

dlj1972 · 08-05-2009, 04:10 AM

Got my results yesterday from my hysteroscopy and biopsy. There were some pre-cancerous cells which my gyno said weren't cancer yet but will develop into cancer in the future. He has put me on provera for 6 months. I have to go back in 3 months for a check up and another hysteroscopy to see how things are going. I'm relieved but also still a little nervous that the provera won't work. Has anyone else been put on provera and if so, did it work for you?? Thanks in advance.

berkana_thurisa · 08-05-2009, 03:35 PM

It worked for me deb!

reggyosu · 08-06-2009, 11:01 AM

Anyone follown Ethan Zohn's cancer battle on People.com? This AM he revealed the cost of his chemo treatments and how that is the scarier part of the whole ordeal. I had my hysterectomy due to the endometrial cancer and was initially told I'll need some radiation... my follow up is a week from tom (friday)... that's when I'll know more about the radiation. But I'm already freaked about the bills from my surgery, now I'm freaked about the radiation bills.

blessedblogger · 08-07-2009, 03:07 PM

I have endometrial cancer.

We started TTC in 2004. I had normal cycles until I was about 19 and then I'd have long stretches of no period followed by long stretches of heavy bleeding/clots/cramps (like 3-6 months long). In 2005 I was diagnosed with PCOS and since we were TTC I was put on Metformin and Clomid. No tests were done, no other options were offered. I tried Met/Clomid for three months and had two life threatening incidences of Lactic Acidosis to I had to stop the Met. At the time I was dealing with other health problems and just put TTC on the back burner. I spoke to several docs (we moved several times in the last few years) about the constant bleeding but they all said it wasn't anything to worry about. No one EVER told me that it could lead to cancer.

In 2008 after several months of terrible bleeding my husband begged me to see someone because I was so weak from blood loss I looked and acted like a zombie. I saw a GYNO who did a pap which came back as abnormal. She referred me to a PCOS specialist. The guy was a huge jerk but I did take his suggestion to get a biopsy since he was convinced I had cancer. I went for the biopsy and the results came back that I had endometrial cancer. It was in the very early stages. The jerk doc told me I had no choice but to have a hysterectomy emmediately and I pretty much had a meltdown when I got home. I'm only 29 and I have no kids and now I have to go through menopause and all the serious health risks (like bone loss and heart disease) that come with that? No way. So I saw a reproductive oncologist who said I should do the hysterectomy. When I pushed him he said technically I could try some medication that may or may not work but that the meds would make me gain weight and the side affects were aweful and then I'd likely never have kids with PCOS anyway so why take the chance?

I had a long talk with my husband we felt like we needed a third opinion so I saw another reproductive oncologist who was much more hopeful and said if I was willing to do the hard work the meds just might do the trick. So I had a D&C to clean me out and the tissue was tested to see if it would be responsive to the meds (Megace, a type of progesterone) and then I was put on the meds. He said it usually took about 9 months for the cancer to disappear and I would have to have a biopsy every three months to check the progress. So I took the meds for three months (I also switched from the relatively healthy diet I was on to a very very healthy diet, started some vitamins, started exercising and taking meds for hypothyroidism). The Megace triggered some headaches for me, I was more hungry, I was very dry vaginally and I would be moody for awhile after each pill but I managed. After three months I had LOST about thirty pounds despite what the so-called experts said but I also felt much better and when I went for my 3 month biopsy there was NO CANCER.

I have to come back every three months for a new biopsy (which I hate with a passion) to see if the cancer is returning but I've been given the go ahead to TTC. Right now my RE, also from UPenn, has requested that I stay on the Megace for another three months to try to lose a little more weight while we do testing (hormones, semen analasis, checking my tubes etc) but in three months I'll come off the Megace and we'll start trying. My RE doesn't want me on any meds (like Met, Avandia, Actos) because she thinks it will hurt me more than it will help me and feels I'm doing a good job on my own. Is it risky? Yes it is. The cancer could come back and could spread. I only have a limited time to conceive which is already difficult with the PCOS but if I manage to get pregnant the pregnancy will provide the progesterone I need. Then if we want more kids I have to have them right away. At some point a hysterectomy will likely be inevitable. And yes, it is a LOT of hard work. My diet is very specific and time consuming and the exercise us a painful but at the end of all this, whether we have a baby or not, I'll know that I tried everything possible and worked as hard as I could to have a child and I won't have any regrets.

So please, if you have early endometrial cancer or precancerous cells, talk to several docs. Afterall, it's your life, your reproductivity and your health, isn't it worth it? Don't let anyone make a decision for you or push you into something you think is wrong. It's your body and your choice. Mostly, I hope that if you are experienceing long periods of no bleeding or long periods of heavy bleeding that you will get to a doctor asap and insist on a biopsy! If I had known years ago that this is where I could end up today I would have been much more vigilent about treating my PCOS. And finally, I just want to say not to give up. Even in this condition with all the tings that are wrong with me and all the time I've been dealing with all of this I still have hope that we'll have a child. Maybe we won't and we'll move on to adoption but I won't quit until I know I've done everything I possibly could. I don't have much money and my insurance doesn't cover fertility treatments so it may well be that my TTC days are almost over but I will decide when that happens, not some doctor. I'll be praying for all you ladies and wishing you lots of caring doctors and baby dust.

dlj1972 · 08-22-2009, 03:27 AM

Quote:

Originally Posted by berkana_thurisa

It worked for me deb!

Out of curiosity, I asked my gyno for a copy of the patholgy results from my hysteroscopy and biopsy. I was absolutely stunned to find out that I was graded as "complex endometrial hyperplasia with atypia". I couldn't believe it and was a bit annoyed that I wasn't told this in my last consultation with him. I've read a bit about this now and I am really concerned about what may happen if the Provera tablets I have been taking don't work.

Has anyone else out there been diagnosed as complex endometrial hyperplasia with atypia and been placed on Provera (10mg twice a day)?? If so, did this work?? I understand that the next course of action if the Provera doesn't work is a hysterectomy. I am only 36 so you can imagine that I am not keen to go down this path just yet! Thanks in advance for any advice.

Deb

blessedblogger · 08-22-2009, 11:59 PM

I don't know much about provera. It's a type of progesterone right? Anyway, when they do the biopsy or D&C they test the cancerous or precancerous cells to see if they're hormone receptive (whether or not the respond to hormones). I don't know how it works for everybody else but when I was diagnosed they told me that the cancer basically feeds off estrogen and responded to progesterone and this meant it was hormone receptive. Taking progesterone works to counteract the estrogen and keep me from building a new lining so new cancer cells can't form. If your doc put you on provera I'm assuming you were hormone receptive and in all likelihood the provera will stop the cancer cells from growing but there's no guarantee. After three months on progesterone my biopsy was cancer free. If I go off the progesterone (which I'll be doing in November to TTC) the cancer can return so it definitely has it's risks. When are you scheduled for your next biopsy to make sure the provera is working?

dlj1972 · 08-23-2009, 01:40 AM

Hi blessedblogger. Thanks for your info. I go back at the end of October to see my gyno and he will schedule another hysteroscopy while I am there. It will more than likely be within a week of seeing him. He is also my surgeon.

From what I have read about provera it is a form of progesterone. He said I had some precancerous cells. I have to take the provera for 6 months. I'm just really confused about stuff because there is so much info here on the internet that is conflicting. I might even see if I can schedule an earlier appointment to talk to him about this stuff.

Thanks
Deb

anxious2bmom · 08-25-2009, 09:52 AM

I'm so sorry to hear this, You will be in my prayers, and I hope everything goes well.

Mschin · 08-25-2009, 04:37 PM

My prayers are with every lady in this thread that is going through testing and treating cancer!

I have a question...now my BF's aunt was recently diagnosed with cancer (phase 4

) which has got me a bit scared because all my reproductive years I have had issues with my AF's! I either didnt have it for months or had it for weeks with heavy bleeding!
Now I dont remember if I have ever had a biopsy done because its been years but I do try to get a pap smear at least once a year and they come back ok!
I haven't had my AF (well a full couple days of bleeding) since December 2008 (because I was on BCP) and am worried!
I had a couple days of brown spotting and one day of red blood about 38days ago but nothing since (I am on Vitex BTW)!

Should I go get a biopsy done?
I dont have cramping... but do have a lot of gas (maybe what I eat at times)
What do you ladies think?

reggyosu · 08-26-2009, 12:42 PM

I had my biopsy after a bad pap test result. Talk to your doctor and tell them your concern. Your BCP may be too high of a dose which could be why you're not bleeding when you should. It may only take an adjustment to that. My roommate takes a high dose because of fibroids and she hardly bleeds. Its only when they lower her dosage that she does.

melinda31 · 08-27-2009, 05:51 PM

I had a 24hr urine and a endometrila biopsy done after this thread started. Believe it or not i just got the results in August. I called numerous times for results, but nothing. They kept saying, we would have called if something was wrong. A nurse came back off maternity leave, and were really good friends, she pulled my chart and stated the biopsy was fine(THANK GOD) however, i had high amounts of protein in my urine, going to see a kidney DR., in 3 weeks...UNBELIEVABLE, seriously.