Recently dx with endometrial cancer age 37 devestated.......

sad sam · Guest

4 weeks ago I was diagnosed with endometrial cancer, I am devastated as the only treatment is a TAH/BSO ...this of course means no children for me ever...I have just turned 37 and my husband is 42, we have been married 5 yrs and have been trying to conceive since then. I can't stop crying I am worried about the cancer, the operation, menopause, and most of all the un-ending sadness of never having children..

I have always had irregular periods but have had DUB since 1996. I was referred to a consultant then that but all they seemed to be worried about was cervical cancer, so they checked me for nothing else I was sent home and told I'd probably had a it of endometriosis and it shouldn't affect me having children, !!...(despite not being on the pill, not having regular ovulation and having unexplained DUB !!) by 2000 I was suffering badly with bleeding so went back to doctors who put me on the pill, it didn't stop the bleeding so after a few months I was out on northisterone which did regulate the bleeding but I wasn't sent to be checked for anything else...

I got married in 2000 and wanted to try and get pregnant straight away becuase of my bleeding history...so I stopped taking the northisterone (as can't take when trying to get pregnant) the bleeding didn't return for some time but as no pregnancy after 2 years of trying went back to doctors....(I was told by someone that you have to have tried for 2 years before you'll get referred to the infertility unit') I was then referred to infertility unit at the hospital, who immediately sent me for all checks possible not just to find cause of infertility but also to find cause of bleeding which had returned...

They were shocked that I had never been sent for any of the tests they read out to me before in previous referrals, so in Nov 2004 I started to have appts to and fro from the hospital for scans, biopsies, and finally had a hysteroscopy and a D&C on 6 June 05.

They told me they found polyps and an enlarged uterus and thickened endometrium, both they and I becuase of my age and lack of other symptoms thought it was going to be non-cancer polyps (as cancer ones are very rare) or hyperplasia that could be treated with progesterone and then they would try and get me pregnant....they had already told me before the D&C that this was what they expected me to have...

Hence the results of cancer were a total shock... I don't know what to do with myself, I was stressed and upset already having waited 3 weeks since the D&C for the results. I guess like anyone I never thought he was going to say cancer, but cancer and hysterectomy, causing infertility and surgical menopause it's a triple whammy ! and I just don't know if I can or will ever be able to cope with it all... I don't have much time, to look into what can be done fertility saving wise, if anything I'm hoping they can give me egg stimulation, but I only have time for one go of that and it might not work...

The consultant wants to remove my ovaries aswell as my uterus and cervix as this is gold standard treatment he said for my endometrial cancer (stage 1A) but I would rather keep my ovaries so I can have future egg stimulations and have them removed at a later date if necessary...of course this only gives me the surrogacy option which we can't afford...I have no one who I could ask to do it for me...

I desperatly want mine and my husbands baby....

I'm not looking forward to any of it I can't have HRT after the op and will be thrust into menopause at age 37... everyone is sympathetic the cancer nurse at the hospital and my doctor have been great but can ultimately do nothing to stop me feeling so devastated.

I just feel so sad and angry and I swing between this and denial and all sorts of silly things go through my head, I just can't imagine not having a family, what sort of a married life is it without the joy of children....I am constantly thinking about never having a baby, life feels so unfair....

Anyway my question is I've been told I can't try long term treatment with progesterone to try and reverse the cancer (stage 1) becuase my cancer cells are not progesterone receptive .. this has confused me as I have previously taken progesterone and it did work in stopping bleeding, also I thought that my cancer was due to too much oestrogen and cancer arising from this is usually progesterone receptive ? am I just unlucky ? I have also read about and spoken to women who have had early stage endo cancer reversed thru use of progesterone whose cancer cells were also not progesterone receptive, surely it's worth a try as I am so desperate to save my fertility ? I don't mind if it returns after I have had a child, or I end up having to have a total hyst and ooph...

I'm desperate to preserve my fertility, apart from demanding that they save my ovaries and I accept the risks this poses of further cancer spread or ovarian cancer until I have tried several rounds of egg stimulation to get as many emryo's as possile for IVF with a surrogate host I don't know what else to do I sound desperate and I am desperate....I have loads of northisterone tablets still and feel sorely tempted to start taking them without even asking my consultant...

I've read so many articles about it working to reverse endo cancer....I suppose endo ablation is also out of the question as opposed to hyst? and what about me getting pregnant with IVF before I have to have a hysterectomy if endo cancer is slow growing ? has this happened in other women before ? please help me...
Sam Crying or Very sad

benni · Regular Joined: 08 Aug 2005 Posts: 10

Hi Sad Sam,

I can't answer your questions regarding cancer but I wanted to give you a website where you can go regarding infertility issues. http://www.inciid.org/article.php?cat=forums&id=381 This will take you to a list of message boards dealing with infertility and the women there have been through it all and can give you the information you need about what would be the quickest and best route to go in dealing with your infertility. I'm so sorry that you are facing this. I know how hard it is to want a child and have medical issues come up that may prevent that dream, but I just wanted to say that miracles can come true. Keep faith and I am sending you many many prayers.

BTW, when you register for the above website it will ask if you can donate anything at this time (it's a non-profit organization), you do not have to donate to be able to participate on the boards so if you are strapped for cash, please don't think you have to donate to get the support you need while dealing with the infertility issues.

Bless you and prayers your way,
Brenda (who dealt with secondary infertility for many years, had many losses, and who the doctors told to have an abortion every time she got pregnant)

DD · Guest

Hi Sam!
I have just read your message and I'm almost in tears. I too have endometrial cancer and was diagnosed a week after my 29th birthday, in January 2005.
I was bleeding abnormally for about 2 years, was put on a different contraceptive, then on norethisterone and finally diagnosed almost a year after the consultant had looked at my ultrasound scan, seen the tumour and told me I had fibroids. I kept telling doctors how ill I felt but they treated me as though I were some sort of silly, hysterical woman.
I'm sure it's of very little help to you but I just wanted to say I understand. I am also very angry, have always dreamed of having a family and am devastated by the prospect of a future without children. It is something I am still trying to come to terms with nearly 10 months after my diagnosis. The pain is not as raw as it was but it still hurts beyond anything I've ever felt.
On a more positive note, I have had surgery, finished chemotherapy (mine had spread) and have a week and a half left of radiotherapy. Hopefully it will all then be over, will not come back and I can start rebuilding a life. I have survived this much, am told I am strong (like I have a choice) and so am hoping to deal with the future as it comes.
It sounds like such useless advice but the only thing that has kept me going is taking each little step at a time. If I think about my entire future I find it overwhelming. It crushes me. Try to keep your ovaries, hope for surrogacy and wait and see. It is very unlikely that my ovaries will ever work again but I need a tiny corner of my mind to tell me they will. Perhaps I'm in denial but we all need hope!
Good luck with everything and take courage in the fact that you are not alone.
x
Dawn

Been there · Guest

Sam,

Two years ago I was diagnosed with a stage 1 endometrial cancer similar to yours. I had a total hysterectomy followed by radiation, and was repeatedly told that I was most likely 100 per cent cured, and needed no further concern or need for an oncologist...... WRONG...

The Gold Standard of care was not given to me---IT INCLUDES REMOVAL OR AT LEAST BIOPSIES OF THE ABDOMINAL LYMPH NODES> Currently I have one of the top doctors in the US and he explained the following:

One third of all women with endometrial cancer who do not have the lymph nodes removed or biopsied following a complete hysterectomy continue to have cancer in their body or will have it return....surfacing in other lymph nodes or organs

That happened to me ( other lymph nodes near my aorta are cancerous and now I have Stage 3 endometrial cancer, have just finished 8 challenging chemo treatments and I am fighting for my life. I NEVER thought that this would happen to me.

I know how badly you want children, but you have a life threatening disease, and if you do not do EVERYTHING to get rid of it, chances are it will not be eradicated and you will be fighting cancer in other parts of your body as well.....soon. You are better off doing everything you can to stay alive than taking a chance in keeping the ovaries and trying to conceive and then not living to raise your baby. Adoption is always there, and many babies need a healthy, nuturing mother. My heart is with you......please put your body and your health at the forefront of all your decisions.

sunflower670 · Guest

Hello,

I am new to this board and I was reading your stories of Uterine cancer...I am 33 and for the last couple of years have been having some problems similar to what you have talked about. I have no medical insurance and so I have not seen a doctor in 5 years for anything. I have been having very heavy and painful periods for some time now. I have a lot of abdominal pain almost all of the time...I put it down to IBS or just really crampy periods...I have from time to time lost like a pink discharge in between periods. And when my period begins I cannot urinate properly or move my bowels...it hurts so bad. But, now I feel tired all the time, and yesterday I started another very heavy period after only just finishing one a week and a half ago. My fatigue is getting worse, and my abdomen feels swollen most of the time and it is strange for me because I am very thin so I feel bloated all the time. People tell me it is cause I haven't had kids yet and I have never taken birth control pills and my hormones are just causing the irregularity. What symptoms prompted you to go see a doctor. I have lost a lot of weight so people say that may contribute...Any information you could post that describes the symptoms you had before being diagnosed..becuase they sau women under 50 just don't get this type of cancer...which I know is not true and obviously you are all a testimony to that too...thank you so much

Dawn · New User Joined: 17 Oct 2005 Posts: 3 Location: England

Hi!
I just read your letter in which you ask about symptoms. Please go to a doctor! Of course I don't know what's wrong or whether it is any kind of cancer but please check.
I have now (hopefully) finished my treatment but remained undiagnosed for a long time, as I've already said. I lost a lot of weight, though I have always been thin and thought it was just due to running around and being busy. I had abdominal pain, discharge (though not pink), and very heavy bleeding which became more than my monthly period and was eventually everyday and with blood clots. I also had night sweats and felt constantly tired, despite normally being full of energy. As you say, it's nonsense that only older woman get endometrial cancer. I am 29 and I had it.
Please just check to make sure. Woman don't have problems simply because they haven't had children. It could be something easily cured but it's better to be safe. If it is cancer then the sooner caught, the better. I'm just waiting and hoping my treatment was successful.
Dawn.

matynne · Regular Joined: 14 Dec 2005 Posts: 23

Hi,

Sad but true.
It does take you some time to soke up the news. Its certainly disheartening not to have children. Who says so? Your job now is to identify various methods of conception .

Good luck with it and I wil let you know if I find something from my OBG colleague.

Until then keep searching for answers.
_________________
Dr. Mateen provides hope,help and support to Mesothelioma Victims and shares his knowledge at his site www.mesothelioma-cancer-guide.com.
Visit www.mesothelioma-cancer-guide.com/mesothelioma-symptoms.html and
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fosterscreations

I too received the EC diagnosis today. I just wanted to say I am feeling the same things you are.

I do want to add that unfortunately women who are in their late 30's that haven't conceived are at a greater risk for uterine cancer due to the increase in estrogen production.

I also have PCO so that is another risk factor. My GYN was just as stunned as I was as when he did the D&C on 8-17-06 he said there was very little tissue but lots of blood. He said generally when cancer is present that there is a large amount of tissue.

I am waiting to hear from the University of Iowa hospitals about a consult appointment with the Onc/GYN.

I have been reading conflicting information from 60%- 90% success rate by doing TH.

I will having them also take the ovaries and lymph nodes. My husband and I had decided several years ago that if we couldn't naturally conceive by the time I was 40 we would look into adoption.

I am going to ask and see if harvesting my eggs and the possibility of a surrogate is an option. I am sure my sister would do that for me. She may even be willing to do a donor egg if mine aren't viable. But we will have to see as I have this first hurdle to get over first.

Please update us on your progress.
_________________
Shannon
http://www.fosterscreations.us

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