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Mixed clear cell and endometriod endometrial cancer -28 years old

DoxieNLuv
Posts: 6
Joined: Sep 2011

Hi all,

I joined here last year but only posted once. I am looking for support. I am 28, married, and live in NJ. I have no children....sadly
I have mixed Clear cell and endometrioid endometrial cancer. I have recently been staged as 3c with only 1 positive node of 27.

Last September I was diagnosed with endometrial cancer. It was thought to be low grade 1-2 endometriod type. There was no spread as confirmed by contrast MRI. I had a D&C in early Nov, and had a Mirena IUD inserted just after beginning 200mg of Prometrium daily. The plan was to spare my fertility and have the lesion reverse from the Prometrium. This would give me a window to get pregnant, and once done I would have a hysterectomy.

Everything has gone the opposite of what was I told would happen. My biopsy in March was odd, appearing to be a higher grade 2, there was concern it was a more invasive UPSC or clear cell. After 3 long weeks and an MRI I was told that another lab read my pathology and it was not a higher grade cancer. However despite the D&C and 5 months of hormones the lesion had returned, but there was still no spread outside the endometrium. A few weeks later I hemorrhaged, had to go to the ER. My IUD dislodged. I was switched to 80mg of Megace twice a day. My doctor was giving hormones another shot...my last shot before s hysterectomy was in order. Fast forward to June snd I am hemorrhaging again. I lost so much blood I was out of breath. I needed an emergency D&C to stop the bleeding. The D&C worked but the results came back that I maybe had a clear cell component of cancer. It was a maybe....Not good.

I had a da vinci Hysterectomy on Aug 13. My ovaries were spared because the plan was to do in vitro and freeze after surgery. I was staged at 3C, mixed clear cell and endometrioid cancer with 1 positive node of 27. The node is a paraaortic node. There was nothing found in my pelvis. This has changed my life. I am doing 6 cycles of taxol and carboplatin, followed by 4 weeks of paraaortic radiation. They do not plan to radiate my pelvis which is good. I just finished cycle 1 and am doing ok. The doctors told me that MAYBE i can do in vitro after treatment when my ovaries wake up again. They said i am young so it should be ok.. My surgeon wants to take my ovaries out after treatment...and of course after in vitro if i am alowed to have it.

I cut 10 inches of my hair off in preparation of losing it soon. Sadly i love my short hair and am still upset i will have to lose it. Is there anyone out there that has gone through the ringer like this? How do you make it through....?

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

This is one of the best places to come for support and just to vent as all the women on here know and understand what you are going through. Maybe not as young as you are, but at least the cancer part. I was 55 and post menopause and had my one child who is now your age. Cancer does change a person's life. It makes you more aware of what is important. You do not sweat the small stuff anymore and the big stuff just take it one day at a time. I also cut my hair off before chemo it made it easier for me when it did start falling out. When it started coming out by the handfuls I used a electric razor to shave my head about 1/8". Man my head was white under all that hair. I later used shaving cream and shaved with a new razor. Me personally I tried hats and scarves but it just felt wrong and made my head sweat, so I just went bald. To me it was no big deal. I would take the ovaries out after treatment and in vitro, just to be on the safe side. Try to take everything one day at a time, rest when you need to, drink plenty of water, take Metamucil to help keep regular, eat when you can and try to keep a positive attitude. I found that helped me a lot. If you need help doing things ask for it. With lots of prayers, positive attitude, family, friends and faith in God, you will get through this. Adding you to my prayer list. Keep us posted. trish

ConnieSW's picture
ConnieSW
Posts: 627
Joined: Jun 2012

At 66 with a grown daughter and grandchildren, I am not in your peer group. From reading earlier posts, I know you have some out there and hopefully they will respond so I am pushing your post to the top again. I know how lonely it felt to not know anyone with UPSC. Finding the women here who share my diagnosis has helped me so much. Good luck and remember your life is the priority.

Connie

DoxieNLuv
Posts: 6
Joined: Sep 2011

I know. I have not met or heard of anyone my age with mixed clear cell/ endometrioid cancer. Everyone tells me I am too young, as if i dont already know that. This isnt supposed to happen in my now in my prime. Its Depressing..

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Im so sorry you have to go through this. I was 45 when dx and my Dr said I was to young have this cancer, I can only imagine your fustration. I do find that coming here and talking to the other ladies comforting. When I first started this journey I read a quote from Winston Churchill... "When you're going through hell, keep going". Right now you are doing everything you are suppose to be doing, so keep going xoxo
Laura

ConnieSW's picture
ConnieSW
Posts: 627
Joined: Jun 2012

I know some ladies on this site also hang out on the ovarian board so I started visiting there occasionally. There is a 20 year old who posted there 9/24 under "new member". Since she is close to your age, I thought you might want to consider posting there too.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

I know how awfully this diagnosis has affected me, us all for that matter, but being the age of your grandmother,or just a bit younger, I am personally saddened withy of and for you. But that ain't enough!
But your internal GPS is making the right choices. I have worded with the burgeoning genetics field for years. This year I worked on a Pilot study for PGD four year olds.
PGD stands for Pre implantational Diagnostics whereby the egg and sperm are 'joined' outside the mom and genetic diseases that once made it impossible for a birth of a healthy normal child is now possible. The good news is you are young and this science is changing daily. Make sure you are tested for Brcas and Colorectal Cancer genes so they won't be passed down to your kids in the future. the definition of 'having' children is changing as we speak. This avenue is not closed for you.
But NOW you must concentrate on healing your body , now today. Listen to the wise women on these lists, change in diet--Servan -Screiber'sbook Anti Cancer, is a reading must. So is Yoga, or alternative excersizeing, walking etc. contolled serious studies, mainly on Breast Ca Pts. On Chemo have shown that this a)increases the effects and affects of the Chemo and b) sense of well being if one does excersizeing five or six times a week During this time.
I remember practical lying crawling to the treadmil I bought in my bedroom and started with five to ten minutes and by the end of the week doing twenty to thirty minutes.
I did have muscle pain from the chemo but the hospital offered reflexology and surprisingly to me, it really helped.
So here we are at all different stages of life, trying to prolong the length but more so the quality of our lives.
Go for it!
Sara Zipora

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So sorry. I also am a senior - not in your peer group. I can't imagine what you are going through. It's bad enough to have cancer without the issues you are facing as a young woman. I hope you have lots of supportive people in your life.

It's sounds like you are doing the very best you can. Loss of hair is small potatoes in the scheme of things. I dealt with my bald head just fine.

I send you my love and caring and best wishes,

Mary Ann

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