Diagnosed carcino sarcoma

Hello Menorca456, welcome to this forum where we all understand how you are feeling right now, and where we try to offer each other help and support.  It’s great that you’re recovering well from your op, just take things slow and easy and don’t overdo it just because you feel good, you need plenty of time to allow your body to recover. It sounds like you’ve been caught and treated at an early stage, which is good news. I’m afraid I don’t know much about chemo as I didn’t have that, I was treated with three sessions of internal radiotherapy (brachytherapy) after my op last August and am doing OK at the moment.  Some of the other ladies here may be able to offer advice, so if you have any questions just fire away.

Try not to worry too much (impossible!) and make sure that when you see your team next week take a notebook and pen with you so you can jot down stuff as it’s so easy to forget what was said as soon as you walk out the door!  You are right, some days it’s hard to feel positive, but treatment these days is much better than it used to be, with more successful outcomes. Once you know what the treatment plan is you will start to get your head around it, and get through it. Gird up your loins - but not too tightly as they need access!! Oh, and don’t do any more googling!

Good luck,

Viv x

• Thank you Jigsaw I’m not going to lgoogle anymore as that is a big source of my anxiety.Just read your profile and very pleased that you are progressing so well after your treatment.x

Hi Menorca456. Good to hear you're recovering well from your hysterectomy and you've received your final staging. I'd say, please don't consult Dr Google, you'll frighten yourself silly. Wait until you meet with your Consultant next week. 

I was finally regraded after the op to stage 1B, grade 3 endometrioid adenocarcinoma serous. I had no LVSI and no spread to Lymph nodes but some malignant cells were found in the Peritoneal wash so I had 3 x sessions of Brachytherapy (High Dose Radiation) as a "Belt and Braces" treatment.

We call it a roller-coaster ride as the emotions go up and down. One day you're positive, the next you're completely low. When you get those days, come here and post, you're not alone, we've all been there.

Let us know how thing go with your consultation next week.

Big hugs, Barb xx 

Hi, I haven’t posted on before, but noticed your post, which prompted me to post. I also have endometrial carcinomasarcoma, and as you say, it is a rare endometrial cancer, so you don’t see a lot about it.

it sounds like you 

Oops - you can tell a newbie!

so, it sounds like your cancer has been caught very early, which is great. Please don’t be worried by my story - my cancer is advanced so my journey will be different to yours, but I am further ahead in my treatment, so I hope so parts of my journey will help in terms of just hearing about my experience.

so, here goes.

I am 54 (just!), and was diagnosed a year ago. It’s actually quite something that I’m still here, as I became very ill, very quickly. In March, I’d had some heavy bleeding, started losing large blood clots, and had some abdominal pain. My GP managed to get me the last scan (it was the beginning of coronavirus and all the normal referral channels were closed). When the scan results were sent some three weeks later, I was immediately referred to the gynae specialist for a hysteroscopy. I had a really bad time with that procedure, and had to have it redone under a spinal anaesthetic some two weeks later (allowing for self isolation). Together with a biopsy, MRI and CT scans, at the beginning of June I was told I had an aggressive cancer and it had spread throughout my abdomen. I was scheduled for a full hysterectomy 2 days later. All went well with the operation, but there was lots of cancer around, so it couldn’t all be removed. I was the referred to the brilliant Christie, where I went on to have chemotherapy and then some radiotherapy. It is all classed as palliative, and the prognosis for this cancer, as advanced as it is, is super poor.

I know a lot of people worry about chemotherapy, and I did too, but for me it worked very well. Before it started I needed weekly stomach drains as I began to suffer with aspires, which was pretty awful. Once the chemo kicked in, it resolved that problem, and my body responded to the chemo, shrinking all of the cancer. Other than a few days of not feeling great after each chemo, it really turned everything around for me, and has enabled me to live again.
At the moment I am pretty well, and just celebrated a lovely birthday. I am going from scan to scan, and it’s likely the next one might prompt some more treatment (if I’m lucky!).

That’s a long enough first post I think. I am more than happy to talk more about any aspect if that would help anyone out there. I suppose the biggest thing from my point of view is that even though I can’t be cured, the treatment I have had has made me well again - not in terms of ridding me of cancer but in minimising the symptoms so I can enjoy each day so far, which I wouldn’t have had without the treatment. I have tolerated all the treatment so far really well, so I hope that is the case for others too.

Anyway - definitely enough for now!

Hi grapesofwrath, your upbeat attitude is amazing and I hope you are able to keep things at bay and enjoy your life. When I was originally seen by the gynae consultant and had the necessity scans, biopsies etc they had what they called a local MDT but were unsure of the diagnosis. They then had a regional MDT with the Christie who recommended a total hysterectomy including my ovaries, cervix and fallopian tubes. It will be done at stepping hill hospital in Stockport. I was due to have the surgery this Tuesday but my blood sugar levels were too high so I'm desperately trying to lower them. I also have other major core morbidities which makes me high risk for surgery. I will try to be as positive as you. Take care, Deb

Hi Deborino, thanks for saying hi!

just wanted to wish you luck for your operation - I hope it can take place really soon. I had mine at St Mary’s and they were a super team, and I recovered really well. I have a huge vertical scar as my omentum had to be removed too, but it healed really nicely. I only had a couple of rough days, and then began to recover well. I was really well looked after there, even though there were no visitors allowed, the other women I met there really took my mind off things as much as was possible. It was my first ever operation, so I didn’t know what to expect, but it went well, even though there was still lots of the cancer about.

it is a big operation, so just allow yourself time to recover and take it one day, one hour, one minute at a time. Loads of best wishes x

Hi GrapesofWrath

It is good to find someone with the same diagnosis and I am also amazed at your attitude to this disease and your ability to get on with your life.None of us want to be on this journey but I am finding strength and encouragement from all the positive messages and support on here.May I ask what type of chemo you were given.I have also read about the cold cap to reduce hair loss and will ask about that.

I will let you all know how I get on after my consultation on Wednesday.

Best wishes

Hi GrapesofWrath and a warm welcome to our spot in the Online Community. 

Having read your story I wanted to say well done you for your positive attitude and thank you for helping to take some of the fear out of this dreadful disease. Years ago the C word was whispered about but nowadays with major scientific breakthroughs we can live with the disease rather than think the worse. 

Most ladies here who have had chemo say it's doable and if it make you feel well again and live a normal life, it can only be a good thing.

Years ago the idea of laparoscopic surgery was "Star Trek" - now it's the normal. Radiotherapy is highly targeted with precision. When I was told about my forthcoming Brachytherapy treatment I was aghast. It was doable, just undignified. The idea of a radioactive tampon inserted up my vagina was sci-fi.

I'm so proud of the way you and other ladies (One who's into her version of War & Peace LOL !) make it easier for others to come forward, reveal their darkest fears and thereby get it (in part) out of their systems!

Much love and hugs your way, Barb xx 

Thanks so much for your lovely warm welcome. It’s definitely the case that there is not a lot of dignity with gynae matters - cancer included! No matter how hard the teams try. I would definitely not be a candidate for Naked Attraction (the clips they show on gogglebox are too much for me) - but at least it’s fleeting and passes, and hopefully keeps us going for a while.

thanks again x