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Just diagnosed with Carcinosarcoma

DonnaA
Posts: 12
Joined: Aug 2018

I was just diagnosed with Carcinosarcoma of my Uterus. I’m told it is very rare and aggressive. I haven’t had scans yet (later this week) and surgery on the 28th. Unfortunately I let it go for a long time thinking my symptoms were being cause by my fibroids. 

 

Does anyone have any experience with this?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

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. 

janaes
Posts: 728
Joined: May 2016

I was diagnosed with uterine carsinosarcoma also known as MMMt. No time for cancer is correct. The doctors wont offitially diagnose you until after surgery. 

Im glad you found our group. I tried to stay busy up until surgery. It helped me stay in the moment and not worry about things.  MMMt is agressive and rare but dont let that scare. People on this board have lived many years. Its been almost two years for me since treatment completion. Stay off of google to find hope. It doesnt help. This is the place to find hope.   But as i said just do one thing at a time and just prepare yourself for surgery. One step at a time. 

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

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.

DonnaA
Posts: 12
Joined: Aug 2018

I am seeing a Gyncologist Oncologist at the  Virginia C Piper Cancer Center in Phoenix. 

I am a retired RN, so it’s hard not to research lol.  The Doctor told me that Chemo and Radiation really don’t help and are palliative not curative.  So i won’t be getting them unless the Cancer  has spread  

 He’s hoping a lot of the symptoms were caused by the fibroids, not the cancer. He is concerned as am I over some severe pain I’ve been having. 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I see 2nd opinion coming.  I was stage 3C1 Gade 3 with carcinomasarcoma uterine cancer.  I had 6 treatments of chemo and no radiation.  This was 7 years ago.  There is hope and I would strongly suggest a second opinion from a different group of doctors and cancer center.  

On the postive note, glad you found us.  Lots of good information on this site and lots of good people too.  We are here to share and support. good luck trish

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

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?

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

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
Posts: 12
Joined: Aug 2018

Laughing

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.  

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

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.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Good news about the scans.  What type of surgery are they doing? Robotic or total abdominal hysterectomy?

janaes
Posts: 728
Joined: May 2016

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

Janae

DonnaA
Posts: 12
Joined: Aug 2018

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. 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

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. 

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

One week after my surgery I called the gynecological oncologist's' office to find out about the pathology results. The nurse (a wonderful woman and nurse who sadly passed away from pancreatic cancer a few months ago) told me the results over the phone and mailed me a hard copy of the report as well.

I was glad to hear the findings so that I was better prepared for the later meeting with the doctor. My pre-surgery CT scan didn't show any signs of metastasis and I was hoping to be Stage 1. However, the pathology came back as Stage 3B, due to tumor cells at the surgical margin with the left parametrium.

Knowing this in advance of the doctor's appointment helped me and my family focus on the next steps we discussed with the doctor rather than reacting to the worse than expected news.

I only had robotic surgery, but I know that open surgery is much harder to recover from. I was pretty okay within few days, but my sister and others who have had the open surgeries took much longer (and had more pain) than I had.

I hope you can find the "sweet spot" of pain management to help you through this rest and recovery period. Hopefully with the huge fibroid gone, you'll be feeling much better soon.

janaes
Posts: 728
Joined: May 2016

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
Posts: 12
Joined: Aug 2018

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. 

Wannabeatit
Posts: 97
Joined: Dec 2017

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? 

Armywife's picture
Armywife
Posts: 244
Joined: Feb 2018

First of all, I encourage you to EAT!  You need protein and calories to heal.  Rest is awesome, but please eat to build back up.  

Also, I had lymphvascular invasion and a positive pelvic wash, but both doctors told me it didn't affect my staging.  So don't despair!  

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

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!

janaes
Posts: 728
Joined: May 2016

Carnation istant breakfast was the first thing i put in my belly after surgery. That is what tasted good. Good job on pregressing in finding out what you need to do. Pathology reports can be confusing

 I remember sitting down with my mom trying to figure it out.  We finally did and with the heip of th doctors i was able to come to terms with it all.  It was hard but it all came together.  Do take care of yourself. You will need the nureshment going forward. A day at a time is okay.

Janae

DonnaA
Posts: 12
Joined: Aug 2018

found out why I wasn’t eating. I had a wound infection developing.  So back in the hospital with a massive 14cm wound infection. They put in a drain and the first day it drained a half of a liter. In the hospital till at least Monday, was admitted Wednesday with a temp if 102.  They want to get the culture results and another CT to make sure the abcess is decreasing.  Depending on what’s growing depends on whether I come home on oral or IV antibiotics. 

On the Cancer, the Oncologist thinks I need radiation.   No increase in the staging because of the LVI, but that’s why he wants to do Radiation. So I am extremely lucky to be 1B. He thinks all the symptoms I was having (spotting for a year, etc) were being caused by the fibroids.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

DonnaA - I am so sorry to hear about the infection.  Please take care of yourself and let us know how it is going.  

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

DonnaA

Glad to hear that you've gotten to the bottom of your lack of appetite and other issues. I hope the medications clear up your infection quickly.

And it's a good reminder for me that the "will" to do something doesn't matter when there is a physical problem preventing our best intentions. I waited far too long to tell the doctor that I was experiencing really bad side effects from the first infusion of the second set of chemo drugs. I kept thinking that I'd feel better in a few days. Well, that never happened and it took additional antiemetics and fluids for me to finally recover. I continue to fight my own instinct to "tough it out" when the right answer is just to tell the professionals what's going on.

But I'm very happy to hear that your cancer was caught at an early stage. While I know that some women had a difficult time with radiation, I found it much easier than chemo. Hopefully you'll get through those treatments with much less trouble than your surgery experience. Let us know how you're doing.

janaes
Posts: 728
Joined: May 2016

Wow! Im so sorry you had to go through this. Although im sure glad you know what was causing you not to eat.  Some times problems are alot deaper rooted than we think. I hope all goes well as you recover. Thanks for keeping us informed. I think about you and am glad to know you are still going forward.. 1B is a good stage of cancer to have. Keep us informed. I thought you mentioned before that the doctors did rule out carsinsarcoma as the type of cancer?  Am i remembering that right?  

My prayers are with you

Janae

Buzzy900
Posts: 9
Joined: Jun 2017

hi Donna 

sorry to hear of your diagnosis. I have carcinosarcoma 1a. I’ve had hysterectomy then carbo/taxol then 3 treatments of brachytherapy.  I wish you the best. Let us know how you are doing 

DonnaA
Posts: 12
Joined: Aug 2018

Home now. Yay!  I guess it wasn’t really a wound infection, It was an Abdominal Wall Abcess and they said it was huge 14.5 cm plus I have another small abcess that they’re keeping an eye on. Came home with a drain and it will stay in till it stops draining fluid. They said if they took it out now the abcess would come right back. I feeling much better but week. I walked to the mailbox this morning and was totally exhausting. I figure just do a little bit every day to regain my strength.  I am eating. My son brought home pizza after I got home yesterday. Not the healthist but Yum it sure tasted good after 5 days of hospital food. 

Thanks for all the comments, suggestions, support, and shared experiences. It really helps. I’m such a newbie in all of this. I really like to read about peopke’s Experances with Carcinosarcoma  

 

Ok I am Grade 3 /1B and the LVI is considered separately. He said I need to have radiation because of the LVI. Other than that it’ll be a wait and see if the cancer decides to spread or if they got it all since it only went 9/10 through my uterus and no other evidence of cancer. Since he didn’t take any lymph nodes, he did say that the LVI made it suspicious that their might have been some in the lymph nodes. That’s why the radiation. I have another appt with the Oncologist on the 20th. 

janaes
Posts: 728
Joined: May 2016

Im glad things are looking up for you. As you were discribibg pizza and how it tasted i could picture how good that was for you. Im glad your appitite is back. Yep doing one thing a day to get your strenghth back. I remember doing that with my bad back after treatments. I wish you well as you go forward with treatments. I had grade 3 cancer as well but mine was stage 2. 

Janae

DonnaA
Posts: 12
Joined: Aug 2018

Saw the doctor for the first time after the hospital. He took out the drain. Yay!  He says I need radiation and then possibly Chemo. He was concernled that the cancer extended almost all the way through the Uterus. Came within 1/2 cm. Plus the LVI.   Especially since the cancer is so aggressive. He also said that having a positive LVI makes it suspicious that there is some lymph node involvement.  i forgot to ask him the official stage.  

Denise66
Posts: 53
Joined: Aug 2018

Hi Donna,

 

I'm am also stage 1b.  I'm Figo 2.  I live in chandler, AZ.  Im being treated by AZ Oncology, Dr. Janicek in Scottsdale.  

 

I had 86 percent invasion.  Negative washings and LVSI.  I'm also a nurse.  Please reach out if you would like to talk . I'm local and there are not many support groups that I have found in the local area. 

 

Denise

 

Email:. banta66@gmail.com

janaes
Posts: 728
Joined: May 2016

Donna 

    Sounds like your making progress. Make sure you get all your questions answered. Remember you can come here for support as you go forward.

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