Uterine Carcino Sarcoma

Inapants

Hi All,

 

About 2 months ago, I began to get stabbing pains when "evacuating".  I found myself bracing every time I had to go.  My husband could hear me trying to breath through it.  In the beginning, it would happen every now and then.  It was exactly the type of pain I had endured when I had endometriosis.  That took 3 laporoscopies, the use of Depot Lupron to put my body into menopause in an attempt to stop the endometriosis in its tracks.  Unfortunately it did not work so my doctor did a partial bi-lat oophorectomy (in 1996).  That definitely helped.  He thought I would go into menopause as he only left a teeny bit of each ovary (I had chocolate cysts).  Right after the surgery, he put a hormone patch on me to help combat hot flashes etc.  Come to find out, I still had plenty of estrogen (probably way too much) and didn't need the patch.

 

Back to the present - I had a teeny bit of very light spotting about a week apart and the stabbing pains were occuring almost daily so my doctor had me get the internal and external ultrasounds.  They found a mass and he referred me to a gynecologist that would do the biopsy/D&C.

The biopsy was on 8/5 and the mass was malignant.  He immediately involved a gynecologic oncologist.  They said that they thought it was Stage 1 Uterine Carcinosarcoma (UCS). I had CT scans of my chest, abdomen and pevic areas.  All fine.  I had the hysterectomy and node sampling done on 8/11.  

As of today (9/28) the pain upon evacuating is just about gone (PHEW!).  Healing is slower than I'd like but it's coming along.  I spoke to the oncologist a week ago today and he said the pathology report showed that the UCS had gone though the lining of the uterus and was present on the top right of the uterus.  It had also spread to both fallopian tubes. The nodes were all clear.  He said he would discuss the treatment protocol in more depth during my post-op but his thought was 3 to 4 months of chemo, then radiation and possibly chemo again.

I had early stage breast cancer at the end of 2004 but declined to take Tamoxifen because of everything I read about the side affects plus all the problems I had with endometriosis made me wary of the drug possibly causing more issues.  Oddly enough, what I've read about UCS is that some women that have had breast cancer and took Tamoxifen, have ended up with UCS.  I still ended up with it and would love to know how that happened!  

To add insult to injury, we had a big layoff at work the week that I had my first surgery so I went into the office that Monday and was told I would still be employed during Short Term Disability but when that ends, I will go back into the office to be laid off and sign all the paperwork, etc.  I would have been with the company 28 years this coming November.  I'm very sad and anxious about this.  My husband has had chronic pain for over 4 years and isn't working so I feel pressured on all sides.

I'm going to get a 2nd opinion as my breast oncologist recommended I get a 2nd opinion at City of Hope Hospital.  I am very interested in hearing what treatment protocol they suggest.

Between endometriosis, breast cancer and breast cancer reconstruction, I've had about 23 surgeries  so far.  I chose the wrong surgeon for breast reconstruction (after having consults with 3 surgeons).  After 3 surgeries, I ended up with two huge wounds on my breast that communicated under the skin.  My sweet husband had to pack my wound once a day and then bandage me twice a day due to constant oozing. My primary doctor asked if the surgeon did a culture....he did not.  My doc did the culture and it came back as pseudomonas aeruginosa and I ended up going to the Infectious Disease Center for 3 months of daily IV treatments which did nothing for the wounds.  A few months later, my breast oncologist found out about a wonderful surgeon who has done a wonderful job (Lat Flap recon), but because of how extensive the damage was, he has been doing surgery every year (since I first saw him in 2007) - trying to fix all the problems created by the other "so called" doctor.

I am glad to find this forum as being able to discuss and share everything that's involved with UCS is very important. When I've seen the oncologist at COH, I will post again to let  you know what their take is on my DX.  I know everyone is different but it's still good to be informed in every way.

Sleep well and be strong,

Nancy

 

 

 

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