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Uterine Carcinosarcoma, any survivors out there?

cbotts
Posts: 6
Joined: Feb 2010

Hi everyone,
My mom was diagnosed with carcinosarcoma in Dec '08, she had a total hysterectomy and removal of pelvic lymph nodes (cancer was found there). Since then has done chemo and radiation, finishing in the summer of '09.
She's doing ok now, but I was just wondering if there was anyone out there with a similar experience (I actually just found out what her diagnosis was a few weeks ago and am seeing how rare it seems to be).
Any feed back would be much appreciated because I really don't want to continue looking up survival stats as they seem pretty dismal.

esperanza44
Posts: 2
Joined: Mar 2010

Hi Chotts, I agree with you. When I look the stats, I get pretty upset since for my cancer they say is 50% survival rate. I had endometrial cancer stage IIIa. I have been in remission since last december. I hope your mother can go through all this with no recurrence at all. I am sorry if I dont express very well. English is not my mother language. Thanks and be strong, have a lot of faith ok?

3generations
Posts: 1
Joined: Apr 2010

My mom was diagnosed in late Sept. 2009. She did chemo, which worked for a while, but then the cancer returned. She had surgery (hysterectomy plus) about 8 weeks ago. She is going to start radiation probably next week. She's only 70 ... seems younger every day. I would love to hear from some survivors of similar cancer situations. And I would like to know what to expect with mom's radiation treatments.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

There are many women with endometrial carcinoma and other uterine cancers that post on the UTERINE CANCER discussion board of this same website. Just click on 'Discussion Boards' on the menu to your right here, and look down the list for 'UTERINE CANCER', and click there. You'll find lots of expertise and survivors there, and would be warmly welcome. I have endometrial cancer myself, Stage III-c, and had my big hysterectomy back in Oct. 2008 and tons of chemo and radiation; and currently show no evidence of disease but am being closely monitored. I feel wonderful and still work full-time and have a full life, so there is hope!

INKY1
Posts: 1
Joined: May 2012

I JUST found my childhood friend's post on Facebook telling me she is having a total hysterectomy today for Uterine Carcinosarcoma and I'm heartbroken. I lost one schoolmate about 10 years ago to brain cancer (same as her Mom had died from about 10 years before her). And I've had several friends at work have cancer, some have died. I've had another childhood friend how battled breast cancer, a daughter-in-law who had a tonsil become cancerous about 10 years ago which is survived and continues to be cancer free today.

I have just been reading everything I can on this horrible uterine cancer. There is no history in my own family of cancer at all but I'm terrified, for my friend today having surgery and for myself.

I'm now wondering if I might better have a hysterectomy as well. I have a very large uterus caused by 3 huge fibroids... but since there is no cancer in my family, I've thought it okay to put off a hysterectomy and wait for menopause to shrink them down. I've been in menopause for 3-4 years now and have several "power-surges" a day. My fibroids are so big that they weigh down on my bladder and the gyn says it's like carrying a pregnancy. My fibroids are in the lining of the uterus type so I know I would have to have my uterus removed, not just the fibroids, and I worry about having to lose my cervix which I understand holds up all your abdominal organs in place.

My fibroids also cause pressure on my lower intestine which interferes with my bowels as well so I was given a pessary to position my tilted cervix better.

So, I'm writing 1st to find out about my friend's condition and how I can support and help her through this as best I can...we live in opposite ends of the country unfortunately.

Please have everyone you know, and everyone they know, pray for my friend Sheila who is only 56.

Hugs, Inky

sue K
Posts: 18
Joined: Apr 2010

Hi
just to let you know that I was diagnosed with this type of cancer last year- and what a total shock it was! I am 65, and eat healthily and keep quite fit with a lot of hill-walking in Scotland where I live. It was discovered that I had a very large tumour in my uterus, so I had an immediate radical hysterectomy. Then the pathology said it was malignant, carcinosarcoma, fortunately only stage 1c, but the cancer is grade 3, which means that they cannot predict what the outcome will be. I had chemotherapy - carboplatin and paclitaxel, followed by radiotherapy, during which I ended up back in hospital with radiation enteritis, which was very painful. However, that was finished in October last year, and I am now free of cancer. I do have on-going problems with severe pain in joints and muscles, and am now on gabapentin which seems to be helping.
Thats all about me- so sorry to hear about your Mom, and I do hope she gets on ok with the radiation- I think most people do ok with it, but pelvic radiation can cause more problems that in some other areas.
Good luck to your Mom, let me know how she gets on.
Sue

cbotts
Posts: 6
Joined: Feb 2010

Hi,
Thanks so much for posting, it is much appreciated.
Mom's last CT was clear, she seems to be doing well, follow up CT in a few weeks so we'll go from there.
I hope all is well with you.

Mary Jo
Posts: 2
Joined: May 2012

A family member has been diagnosed with this type of cancer and I am wondering how your Mom is doing now almost 3 years later.

Thank you

Mary Jo
Posts: 2
Joined: May 2012

I have just signed up for this web site. a family member has just been diagnosed with this type of cancer and everything I read is pretty dire. I am wondering how your Mom is doing at this time. The last comment I have from you is Feb of 2010. what has happened since.

Thank you.

slpjohns
Posts: 1
Joined: Mar 2013

It was July 2011 and I was 47 years old when I found I had stage III-C Uterine Carcino Sarcoma. I had a complete Hysterectomy, Gall Bladder (not Related to Cancer), and 29 Lymph nodes removed with the Davici Robot. The cancer was found in 3 of my Lymph nodes. I turned 48, 4 days after starting Chemo. I had 6 treatments of Carboplatin and Paclitaxil, once every three weeks. I then had 6 weeks of external radiation, every day Monday through Friday, and then two treatments of Brachytherapy (Internal Radiation). 

I was very Healthy before this. I am from Spain originally and followed a Mediteranian Diet because that is what I grew up on. This included olive oil, garlic, and tons of colorful vegatables. I used to run 4 miles a day. Cancer runs in my family, but in the latter years of life. I was the first to get cancer pre-50.

I opted for this treatment because I knew that this was extremely aggressive. I had inspiration and a Priesthood Blessing that this is what I needed to do. If you think of the Human body like other living organisms like trees, they need to be pruned to flourish.

It was painful, you don't take poisen into your body and expect happiness. 

I finished my last chemo December 28th 2011, and last Radiation March 29th 2012. Due to the extensive treatment I have had two Insufficient Pelvic Fractures caused by the radiation in Agust 2012. This is still an issue because it takes up to 15 months to heal. I was happy when I found this out because it wasn't cancer spreading to my spine! This was the original thought. I have to use a Vaginal Dialator, or be with my husband 3 times a week  for the rest of my life, to prevent scaring and the vagina closing. My husband and I prefer the latter, Smile. I have mild Peripheral Neropathy in my extremities. You may say to yourself "Is it worth it?".To me IT IS! Without it I would most assuredly be dead by now. I look forward to the times ahead with my Hurband, Kids and Grandkids. 

As of todays date I am no longer being examined by my Radiologist Oncologist. I am examined by my Gynocologist Oncologist every 6 months, and my regular Oncologist every 3 months with a CT Scan every six months. My Oncologist wants me to alert her of any changes in my body, due to the aggressiveness of this cancer.

The 29th of March 2013 will mark 1 year being cancer free. When I make it to July, my Gynecologist Oncologist said it greatly increases survival rate. Looking forward to many more years to come....HOPE YOU ALL DO TOO!

 

GG1955
Posts: 4
Joined: Jul 2014

I too was diagnosed with carcino sarcoma stage 3c.  You give me much hope.  I am very positive that I will beat this.  I have a lot to say and cant think right now

 

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

When you are ready, come over to the Uterine Board!  Lots to read about and great, helpful people there, too! Debrajo

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