Uterine Carcinosarcoma

I am sorry you have had to find us, but welcome.  Your mother is right that the web is a scary place so that she has a child willing to go and search out information says a lot about what her child thinks of their mother. 

I am sorry I didn't have the same type of cancer your mother does but hopefully some of the other wonderful women on the board with chime in.

I did find the following article which mentions your mother's specific cancer and thought you might want to read it:

http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=842

That would make sense.   I had stage 3/4 as the cancer had gone through the uterus into the bladder.   I had radiation only.      That was nearly 7 years ago.  I agree totally with your mum. I took one look at the internet...saw the prognosis...that really annoyed me and I have had no desire to find out anything more.  I figured that the specialist knew what he was doing and I would get on with my decision that I was going to be fine.   I told 3 close friends as I had to be away from home for the radiotherapy - and I also did not want family to talk about it/worry as I just wanted to get on with the hiccup in my life.  My son was brilliant.  Practical, no fuss, there when I needed him and totally understood that for a while other people were in control of my life and I wanted normality.    I wish your mum all the best and applaud her decision.

Your Mom is lucky to have you. My "baby girl" set up this  for me. I have to go next week to brachytherapy follow with 6 cycles of chemo. Two years ago I had double masectomy, with chimo. Not fun, but what can we do?  Year later my right thyroid was taken out, but that one have no cancer, but huge mess. This time my cancer was golf size too, my uterus. Stage IA endometrial carcinoma. Since I had breast cancer I have to go with my doctor advise. I'm scare to death, but we just can't give up. Better us, then our children. When I see kids with cancer on the TV, I always cry like a baby, now actually understand too, because my cancers. Find anything to help Mom. Every day is a present, remember. Today is a good day to be alive. I wish all the best and pray, to your Mom and you too. Gaby.

Teamkelly said:

How can I help you, help your Mom?

My name is Nicki, I am sorry to hear about your Mom's cancer.  My sister-in-law also is not interested in using the Internet for information or support, so I do it for her. Kelly was diagnosed in August 2012 and had surgery in September, She was stage 3C, we went to Sloan Kettering for a second opinion after the initial surgery they suggested that she follow her doctors advice as he was one of their top surgeons in California. Kelly had 25 treatments of carbotaxol following the surgery and then nothing but a follow-up every six weeks. She went on with her life and normal routine. In January 2014 she began slurring her words and being unsteady on her feet she was rushed to the hospital and diagnosed with METS on the brain, three of them. She underwent brain surgery where all three were removed 2 completely one partially then cyber knife therapy to treat them. At the time of the brain surgery it was discovered that she had a tumor in her abdomen as well as one on the wall of her chest cavity. It was decided to remove the one in her abdomen and treat her with 20 rounds of radiation to the abdomen. When her doctor removed the tumor in the abdomen he placed something in her abdomen to protect her from the radiation not sure what this is but some type of mesh shield. The tumor in her chest cavity as far as we know remains today, it was decided that she would have no more treatments the doctor had nothing else to offer her. In February 2014 she decided to try medical marijuana, she lives in a state where it is legal. She saw the doctor who wrote her a prescription and then someone came to her house with different forms of the marijuana. At this point Kelly was losing weight on a regular basis was extremely fatigued and did not look well at all, she was unable to exercise which had been something she had done even through chemo and radiation. She decided after we did a lot of research to use the marijuana oil which is a highly concentrated form of the cannabinoid that is in the marijuana ( for more info go to Phoenixtears.ca/ , use the From Rick drop down button). Kelly immediately was able to sleep through the night without medication, was able to majorly reduce her pain medication and is now completely off of it, and started to regain her weight even though her appetite has not come totally back, she was able to eat. She will have another brain scan next week and if there are more tumors they will treat with cyber knife, her last brain scan showed that there was no tumor activity and that the places that had had surgery were starting to fill in. She will have a full body PET in about a month. This week Kelly started back with weightlifting and is getting to exercise on a regular basis, the marijuana does make her extremely relaxed and she started sleeping a lot in the beginning but is now adjusting to it and it does not affect her as much as in the beginning. She will take a gram a day of the oil for six months which is the recommended dose for those who have had chemo and radiation. By the way Kelly is 66 years old and has never had any health problems, she also has never had children. 

As far as finding out about this disease the statistics are not good but each person is their own statistic as many of the ladies on the site will tell you, don't go by the statistics go by what your mom is able to do and tolerate. I hope this has helped you, God bless you and your Mom.

Thanks for the update on Kelly.  Glad to hear she has found relief with the marjuana.   glad she is able to get back to exercising.  I hope she continues to gain weight.  I thought marjuana increased the appetite, but I guess not for her.   I hope her next scans come back with no new tumors.  Kelly is lucky to have you for support.  You both remain in my prayers.  

Ro10 said:

Nicki

Thanks for the update on Kelly.  Glad to hear she has found relief with the marjuana.   glad she is able to get back to exercising.  I hope she continues to gain weight.  I thought marjuana increased the appetite, but I guess not for her.   I hope her next scans come back with no new tumors.  Kelly is lucky to have you for support.  You both remain in my prayers.  

Thank you Ro! Yes, it has increased her appetite, her problem is something happened to her tongue when she had the brain surgery, so she is having a hard time enjoying food because it just does not taste the same. Without the marijuana she would still be losing weight, But she is gaining now. We are hoping the tongue will get better over time. I can't believe the difference the marijuana has made in her attitude, in the beginning she slept so much while her body was adjusting to the high dose, but I actually believe that this sleep without the anxiety about the cancer has really restored her energy.

Teamkelly said:

How can I help you, help your Mom?

My name is Nicki, I am sorry to hear about your Mom's cancer.  My sister-in-law also is not interested in using the Internet for information or support, so I do it for her. Kelly was diagnosed in August 2012 and had surgery in September, She was stage 3C, we went to Sloan Kettering for a second opinion after the initial surgery they suggested that she follow her doctors advice as he was one of their top surgeons in California. Kelly had 25 treatments of carbotaxol following the surgery and then nothing but a follow-up every six weeks. She went on with her life and normal routine. In January 2014 she began slurring her words and being unsteady on her feet she was rushed to the hospital and diagnosed with METS on the brain, three of them. She underwent brain surgery where all three were removed 2 completely one partially then cyber knife therapy to treat them. At the time of the brain surgery it was discovered that she had a tumor in her abdomen as well as one on the wall of her chest cavity. It was decided to remove the one in her abdomen and treat her with 20 rounds of radiation to the abdomen. When her doctor removed the tumor in the abdomen he placed something in her abdomen to protect her from the radiation not sure what this is but some type of mesh shield. The tumor in her chest cavity as far as we know remains today, it was decided that she would have no more treatments the doctor had nothing else to offer her. In February 2014 she decided to try medical marijuana, she lives in a state where it is legal. She saw the doctor who wrote her a prescription and then someone came to her house with different forms of the marijuana. At this point Kelly was losing weight on a regular basis was extremely fatigued and did not look well at all, she was unable to exercise which had been something she had done even through chemo and radiation. She decided after we did a lot of research to use the marijuana oil which is a highly concentrated form of the cannabinoid that is in the marijuana ( for more info go to Phoenixtears.ca/ , use the From Rick drop down button). Kelly immediately was able to sleep through the night without medication, was able to majorly reduce her pain medication and is now completely off of it, and started to regain her weight even though her appetite has not come totally back, she was able to eat. She will have another brain scan next week and if there are more tumors they will treat with cyber knife, her last brain scan showed that there was no tumor activity and that the places that had had surgery were starting to fill in. She will have a full body PET in about a month. This week Kelly started back with weightlifting and is getting to exercise on a regular basis, the marijuana does make her extremely relaxed and she started sleeping a lot in the beginning but is now adjusting to it and it does not affect her as much as in the beginning. She will take a gram a day of the oil for six months which is the recommended dose for those who have had chemo and radiation. By the way Kelly is 66 years old and has never had any health problems, she also has never had children. 

As far as finding out about this disease the statistics are not good but each person is their own statistic as many of the ladies on the site will tell you, don't go by the statistics go by what your mom is able to do and tolerate. I hope this has helped you, God bless you and your Mom.

First of all, thanks for posting this! Your sister-in-law is an inspiration. My mom has recently been diaggnosed with this cancer as well (3B) -- has had full hysterectomy and is now exploring treatment options. Could you let me know the name of the surgeon or specialist your sister-in-law saw in California? We are also in Cali, and I'm struggling to find anyone who has a lot of experience with this; we want to make sure we get the best possible chemo/radiation treatment plan.

Thank you!