Just diagnosed with Carcinosarcoma

Dearest Donna, try to breathe.  You found a good place to come and ask questions, cry, vent - everything!  

First I would say, please find a gynecologic oncologist to work with.  They take additional training to work with cancers "below the belt".  They really won't know what you have until they have done the surgery and had a chance to find out what is going on.  I have no doubt the other wonderful ladies and husbands will be along to welcome you, but surgery is around the corner and that is step one.  

Please don't beat yourself up with thoughts, "let it go for a long time".  You are dealing with it now and you are not alone. 

I also have uterine carcinosarcoma (stage 3B), diagnosed in 2016, followed by surgery, chemotherapy and radiation. My treatments ended last September and I have been NED (no evidence of disease) since then. I didn't have much time to dwell on my diagnosis before surgery as I was helping my sister move to a new home and trying to wrap up a client project before the surgery. Keeping busy did help.

If you can, take along a family member of friend to your meetings with the gynecological oncologist to help you take notes. It can be a lot to absorb all at once.

And try not to focus on the life expectancy statistics you read online. While this is an aggressive disease and doctors will treat it accordingly, many of the statistics reflect patients' experiences from the past when treatments varied. As Janaes said, there are long-term survivors of this type of cancer. Some still check-in on this board occasionally.

You really won’t know what the exact situation is until your surgery. But I’m not sure about his comments about chemo and radiation at this point.  I would be thinking about a second opinion. Did you consider Mayo?

I agree with the suggestions to seek a second opinion, especially once you have the pathology report from your surgery. There was a change last year in the NCCN Guidelines for Uterine Neoplasms that stated for High-Risk Carcinoma Histologies (including Carcinosarcoma) the preferred treatment option for even Stage IA is “Chemotherapy ± vaginal brachytherapy.” This was a change from earlier versions of the Guideline when the recommendation for just observation after surgery for early stage carcinosarcoma was considered equally reasonable.

For stages 1B to IV, chemotherapy is recommended in the Guidelines. The benefit of radiation is still under review. Radiation can reduce the incidence of cancer recurrence to the pelvis, but doesn't necessarily translate to longer survival.

I chose to have radiation as recommended by the gynecological oncologist and medical oncologist. But, as the radiation oncologist said, I could also have chosen not to have radiation and no one could have faulted my decision, given the lack of definitive evidence one way or the other.

A recurrence of the cancer after treatment would change your condition from remission to a more chronic condition. But as long-term survivors like Txtrisha55 show, initial treatment with chemotherapy can lead to a long period of remission, which is pretty close to "curative" in my opinion.

Do keep us posted on how things are going for you as you get your scans and have surgery.

DonnaA said:

Scans

Finally some good news!  The scans came back negative for Metastastis   Next step surgery. Hopefully that will look good   The Doctor said he hoped a lot of the symptoms that I’ve had for the last year were caused by fibroids. Since this cancer is so aggressive you would think I’ve have Mets if it was growing untreated for a year. 

eta

its nice to meet other people with the same type of cancer, especially since it’s so rare. Thanks for sharing your stories.  

I'm glad that your scans look promising. I hope the surgery relieves the symptoms you've been having and that it provides a clear path forward. As most of the ladies here can attest, the period before surgery can be the most nerve-wracking.

Thanks for keeping us updated. Im glad you recieved good news. I wish you the best with surgery.

Janae

DonnaA said:

Hysterectomy

i had the hysterectomy 3 days ago. They did it robotically but still have a 6 inch pelvic incision. Wasn’t happy with the way I was medicated for pain. I take 15mg Oxycodone for back problems, been on the same dose 6 years. That’s all I received for pain post operately and a couple of nurses even tried to give we less. Nursing care sucked. Oh well home now   The doctor said that the lymph nodes looked normal, but of course we wouldn’t know for sure until the pathology came back. The doc said they would call me Tuesday with the results. Weird the nurse or medical asst called me today and said no they wouldn’t be calling me with the result, that I wouldn’t get the results till the next visit on the 17th. Very confused.  This cancer center is supposed to be one of the best. Lots of mixed messages. 

 

Eta

had someone measure my pelvic incision and it’s 6 1/2 inches long. He also told me the doctor told him he had to make the incision larger than they had anticipated due to my uterus being so large and I had a huge fibroid.  No wonder it hurts so much.  The doctor had told me that he was going to try to remove it vaginally but if he couldn’t he would make a small, 3-4 inch incision. No one told me afterwards they had to go larger. The robatic incisions don’t hurt at all, it’s the pelvic one that is awful but it does get a little better every day. 

Hi Donna

i woke up with a C-section like incision after expecting only robotic too. I didn’t get my pathology report until about 3 weeks later. Best to concentrate on healing from your surgery right now. 3 weeks from my surgery I went to Italy before I started chemo. That was in 2016. Good luck to you. 

Im so glad surgery is done for you.  I like the recomendarions fom these orher wonderful ladies aboour gerrinf rhe report before your visit.  I had a bad experienceb after surgery.  I hadnt even seen my parhology report before doctors were telling me what was foingbto happen. Even before i went home i had a doctor twñling me what was going to happen.  My hope came qhwn i finally got the pathology report and could decide doe myself what to do.  I think its imporrant to know what stage and grade and kind of cancer you have so you can feel confident in what to do.  I hopw rhey call and tell you the results.  Thanks again doe your update.

DonnaA said:

Pathology report

Path report is confusing. The doctor didn’t take any lymph nodes, felt I wouldnt tolerate it very well. My tomorrow was 10.5 cm with 9/10 invasion in my uterus.  O free flaring cancer cells. They put the staging at 1B, HOWEVER. The Lymphovascular is positive. So that can bring me to 3C, I think.   So far no metatatises have shown up  

My doctors appt is next week, so I guess I’ll find out the official stage and treatment plan 

 

2 and 1/2 weeks since my surgery all I want to do is sleep and I have no appetite. It’s been 3 weeks since I‘ve eaten. I probably should start taking some  instart breakfasts.  I have a bunch left over that I needed before surgery for Atrial Septal Defect. 

I also have extensive LVSI but I haven’t heard of them adding more to the staging because of that. I was told it is looked at separately from your staging. Did your doctor tell you that It changed your stage? 

I'm sure that you advised patients to try to eat more after certain procedures during your nursing career. So I know that we're "preaching to the choir" here. But we still want to "nudge" you to try to get some more nourishment now, even when you don't feel like it.

While I didn't have problems eating after surgery, I definitely found it hard to eat at times while I had chemo. I can only say that I ate what I thought I could tolerate then and didn't worry so much about the nutritional values, figuring something was better than nothing. I ate more plain grilled cheese sandwiches during chemo than I ever have in my life. But it's what I could handle at that time.

Oddly, despite not really eating as well as I normally try to do, my A1C level during chemo was the best it has ever been since I was originally diagnosed with diabetes many years ago. Who knew there was an upside to cancer!