Uterine Carcinosarcoma, any survivors out there?

Actiquser said:

carcinosarcoma

Hi I was diagnosed with carcinosarcoma of the uterus stage 3c in October 2011. Spread was to the pelvic and para aortic lymphnodes. I had a radical hysterectomy and removal of all pelvic and para aortic lymph nodes. I had taxol and carboplatin 6 rounds with a further surgery to vagina lump (non malignant which grew during chemo!!!) after 3rd round. (I suffered sever side effects from chemo) Immediatly followed by 30 extended external field radiation and 3 internal brachytherapy. I suffered severe effects of radiotherapy treatment, total obstruction of small intestine 2 months after completing treatment complicated by multiple pulmonary emboli so surgery was delayed 8 months for removal of small intestine. I was fed intravenously for 2 years with a Hickmann Line. I suffer short bowel syndrome, pelvic radiation disease, regular bleeding from my bowel and bladder, peripheral neuropathy, lymphodema in my leg from toes to pelvic and constant lethargy. I had been on Actiq and fentanyl for 3 years for pain but now stopped that with severe withdrawal symptoms. I use hyperbaric oxygen therapy now. I basically had all treatment thrown at me as I was not expected to survive.

I am still cancer free but the cost has been immense. Not many of us survive this disease and there seems to be little current research in this field. Does anyone know of any current research or results?

You have been on an incredibale journey.  How strong you must be!  II think,that a lot of the.time we feel worse from the side effects from treatment then we did from,the cancer..  I am on immunotherapy at this time as compassionate use from the manufacturer.  I am having no side effects at all and I just had a CT scan that showed shrinkage in all but one of my tumors. My oncologist is very excited and hopeful that this is working.

Hugs and prayers to you brave lady, Lou Ann

EZLiving66 said:

I wondered about that

My doctor recommended the six rounds of chemo with "possible radiation."  I wondered what he was going radiate - LOL!  All my lady parts are gone and the CT scan showed no other tumors.  Maybe he's waiting to see IF a tumor develops he can go after it??

I hope I'm you in four years!!!  You are my inspiration!!

Take care,

Eldri

Hi I am here. I am now a 23 month survivor. 

So sorry you have been through so much. You have come to a wonderful group of informed and supportive women. I also have MMMT, staged at 3C, diagnosed in 2013 - but don't have any new information about our cancer.  Wishing you comfort and joy in the midst of your suffering. -j

Angelapo said:

Mother just diagnosed

Hello all, 

I came across this site and am finding some hope and strength in your posts. My mother was just diagnosed with Stage 3C II uterine carcinosarcoma. The statistics are hard to look at. She had the hysterectomy and that went well so we are meeting with the surgeon to discuss. It was found in one of her para-aortic lymph nodes. It looks like she will need to do 3-4 months of chemo followed by radiation. If anyone has a similar story or any words of wisdom, I would truly appreciate any. 

 

Angela 

this is always hard.  First do not pay attention to all,the statistics that are out there.  A very great lady on here used to say,  "we are a statistic of one", and that is very true.  I was diagnosed over four years ago.  I have stage four papillary Serous Endomedrial andocarcinoma high grade.  And I am still here.  I have many more good days than bad.  I have had surgery, radiation and 36 rounds of chemo and I am still here.  I am now on an immunotherapy drug that is giving good results.  There is hope out there.  You will be amazed at the strength that your mother will have through this.  She is blessed to have a caring daughter like you.

Hugs and prayers for both of you as you start this journey,  Lou Ann

DrienneB said:

Welcome Actiquser!

So sorry you have been through so much. You have come to a wonderful group of informed and supportive women. I also have MMMT, staged at 3C, diagnosed in 2013 - but don't have any new information about our cancer.  Wishing you comfort and joy in the midst of your suffering. -j

Hi DrienneB. My mom was just diagnosed with similar, stage 3C2. Am curious about your chemo experience and if you had to do radiation? Thank you. 

MAbound said:

Statistics

First of all, forget the statistics! They are not always consistent, may be outdated, and are numbers influenced by variables that may not apply to your mother. We are each of us unique with our diagnosis and treatments because there are so many variables. If there's one thing you'll find the more time you spend on this board is that there is a lot of reason to remain hopeful no matter how she is staged. Focus more on learning what you need to know for the next step after dianosis....like what to expect when she's has surgery because that will be her first step. Don't get ahead of yourself,  but be prepared for this taking awhile to get through. It's not easy, but it is doable and you won't be alone as you go through it. Hang in there!

Thank you!!

I agee  forget about the statistics.  They are not helpful.  I was diagagnosed with uterine carcinosarcoma stage 2 grade 3 back in May 2016 and just finished chemotherapy treatment two weeks ago.  The pathologist  found less carsinisarcoma in my cancer after surgery than they orriginally thought after my biopsy which was good news to me. It was scary to hear i had carsinosarcoma.  I wanted a cancer that wasnt agressive for sure. Accually i didnt want cancer at all.  Its normal to be scared. Sounds like your moving forward though and thats great.  For chemo I did it once every 3 weeks and I did it 6 times.  There is also another yahoo group just for carcinosarcoma (MMT) cancer that you might be interested in. There are others on this site who also post regularly and they are further along than me and hopfully they will have something to share.  Starting a new thread is also helpful. 

Janae

Hello everyone,

I've been reading this discussion board almost religiously. I just need more answers than what I'm reading online. I know carcinosarcomas are a scary thing. My mother was recently diagnosed through a biopsy. It all started out as her bleeding a lot down there and then hearing something about an enlarged uterus and as I've read these are usually symptoms from uterine cancer. She's been feeling this way since June of this year. I'm just really scared you know? Not cancer again, this hasn't been the easiest year as I just lost my brother to short battle with lymphoma last month. I just feel like it's not being taken as serious when this is a malignant tumor. Her surgery isn't scheduled till December 2nd and I keep on thinking to myself if this is a malignant one shouldn't it be considered an emergency or something? 

I need help on what I should do. I pay attention to my mother looking for any symptoms of this possibly spreading as I've seen with my brother and so far very little pain here and there. I know I'm beginning to bother her and even scare her sometimes but I'm just really scared myself. I don't know how you women do it, but I send my love and many hugs to each and every single one of you who is going through such a terrible thing. It's bad enough that we all go through so many bad things in our lives and then illnesses to top that off? Your responses are greatly appreciated and I wish you all a good day. 

Ashleig

Editgrl said:

I'm so sorry that you are

I'm so sorry that you are having to go through this again so soon after your brother.  Unfortunately, even though a cancer diagnosis is an emergency to those of us diagnosed, it's usually not so to those who are doing the scheduling.

May I ask if your mother has had a scan to determine if the cancer has spread?  I had a CT scan done before surgery and many, but not all, women do have some sort of diagnostic scan to try to determine the extent of the cancer prior to surgery.  Is your mom seeing a gynecologic oncologist?  If not, I would suggest getting a referral to one, as they have additional education and training in such cancers. Has her doctor mentioned chemo or radiation after surgery?  Because carcinosarcoma is a Grade 3 cancer, chemo and/or radiation is almost always recommended, regardless of stage.

I know it's scary but take a breath, and take things one step at a time.  If you've been researching online, you've no doubt seen a lot of dismal statistics.  Keep in mind that many of those stats are outdated, and there are new treatment options.  Most of all, welcome to this board.  I'm glad that it has already helped you and know that we are all here to support you and your mom as you go through this journey.

One thing...  you may want to start a new thread.  This one is very long and bulky and it can be hard to find new posts.  

Chris

 

Hi, thank you so much for your reply. I guess the week she was diagnosed (I wanna say around the beginning of the month or so) she went to the hospital but that was because I'm guessing she got so overwhelmed after getting the news and on that same day we picked up my brother's ashes. I woke up to finding her sitting awake and said she was sweating a lot and was in bit of pain and I instantly decided in taking her to the hospital and I wasn't taking any chances. Now I know she always sweats a lot as it might have to do with menopause if I am correct. She's 47. 

When we got there she was feeling alright. They did a CT scan on her pelvic area and I remember the doctor told me it's nothing urgent from what he saw so maybe that's a good thing? Her blood count was normal, white blood cells weren't seen to be fighting any type of infection. To this day she's been doing okay not as much pain. The doctor performing the surgery is actually a gynecologic oncologist. And from what he told her is that once he does the surgery he'll be able to see if she needs further treatment such as chemo. 

Once again I want to thank you so much for helping me out and I wish you all the best.

I too had a bit of a wait before surgery. I was diagnosed in August and had my surgery in mid October. My cancer was high grade, but after one year of surgery, radiatio, and 6 rounds of chemo, I'm in the clear. Oh and about the sweating- I had been through menaupause for at least 5 years, but then I began having night sweats probably several weeks before my symptoms occurred. Long story short I just want you to know that it is possible to recover and live a good life. My prayers for you! Your mother is lucky to have you! You will be a great support for her.