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Mum has carcinosarcoma of the uterus

10 Dec 2018 23:38

Hello,

Mum (81) diagnosed with Uterine Carcinosarcoma Dec 2017 type 1a Grade 3. Total laparoscopic hysterectomy followed by 25 rounds of radiotherapy and 2 brachy. All clear so far.  Results from biopsy of polyp and CT scan due Thursday 13th Dec.

It's a rare type of uterine cancer, would be interested in experience of others the same type.

Cheers,

KT

 

Mum has carcinosarcoma of the uterus

13 Dec 2018 10:02 in response to ktktkt

Welcome to the forum ktktkt.

I noticed that today was results day so I just wanted to quickly stop by and wish you and your mum good luck. It's great your mum has had the all clear so far so fingers and toes crossed this continues today.

I've had a quick look through the forum for you and found that @Battling Babe ‍ had the same diagnosis two years ago. She pops back every now and again so fingers crossed she'll stop by when she can to say hello and share her experience with you.  

You may want to have a chat with @Sophie993 ‍ as well as her nan was diagnosed with a rare type of uterine cancer not too long ago, which you can find out more about just here.

Kind regards, 

Steph, Cancer Chat Moderator 

Mum has carcinosarcoma of the uterus

17 Dec 2018 15:41 in response to ktktkt

Hello KT and welcome to the forum.  I was sorry to read about your poor Mum but what a brave and strong lady she is.  The treatment must have really taken it out of her but here she is, one year later!  I do hope the results of the biopsy and CT scan were good news for her.  If it's of any interest, a year after my surgery and treatment for my uterine carcinosarcoma in 2015 I was riding a camel!  Not something I would recommend but I did it and I'm sure your Mum will be up to doing something equally as stupid (!), if she so wished, very soon.  I had to have a CT scan on Friday 16 December and was stuck in traffic on the way home so had to get off the bus to look for a toilet (all that water you have to drink before the scan needs a release eventually).  I couldn't see any public toilets (are there any about nowadays) so went into a "community housing centre" and explained my desperate need.  I was asked where I lived!!!  What difference does that make?  Because I didn't live in the area, I wasn't allowed to use the toilet!!!!  I couldn't believe it.  I went into the opticians next door and they were so different: helpful and understanding.  I go for the results of that scan at the beginning of January 2019 so am keeping everything crossed.

My best wishes to your Mum and you for Christmas and a healthy and Happy New Year.

BBx   

Mum has carcinosarcoma of the uterus

21 Dec 2018 14:34 in response to Battling Babe

Hello BB!

Thanks very much to the Moderator for tagging you, and for your reply. You're right, she is an amazingly strong and brave woman and deals with everything with great humour and fortitude. Unfortunately, the scan and biopsy results last week weren't very good news. It has returned in her lungs, although she's asymptomatic at the moment. As she feels alright we're going to have a jolly Christmas and try and forget about it for a while. They're not suggesting any immediate treatment as she really needs a break. So review in February. We'll see where we are then.

Hope your own results are better news. I know what you mean about public toilets, they are so scarce these days. Do you have a radar key? If not, might be worth getting so you can use disabled loos.

Cheers,

KT

 

Mum has carcinosarcoma of the uterus

21 Dec 2018 20:17 in response to ktktkt

Hello KT

I'm sorry to read of your poor Mum now facing it in her lungs.  I didn't say anything when I posted last time, as I was hoping it would be good news for you, but I too had it in my left lung.  It was diagnosed on my birthday - 14 November - and I had the operation on 14 February.  Apart from some breathlessness if I overdo things, I feel no different and am glad to say that awful cough has now gone.  Hopefully February will bring you some positive news.

I go for the results of my scan on 8 January so I'm keeping everything crossed.  Thank you for your good wishes.

My good wishes to your Mum and you.

Take care.

BBx

 

Mum has carcinosarcoma of the uterus

27 Mar 2019 18:52 in response to Battling Babe

Hi BB,

Was just wondering how you were doing. Mum is defying expectations and is still asymptomatic with no treatment. In Feb, Doc said she was doing remarkably well and (fingers crossed) we don't need to go back again until May for scans etc., Nothing else planned until/unless she develops symptoms. We had a fabulous party for friends and party last weekend. Carpe Diem!

Cheers,

KT

Mum has carcinosarcoma of the uterus

28 Mar 2019 16:41 in response to ktktkt

Hello KT

It's so nice to hear from you and with such good news as well.  I'm so pleased for both of you.  It's always on your mind once you've been diagnosed and, regardless of "helpful" comments such as "don't even think about it" (eh?) you can't help but think about it.  I know how you both must feel getting news like that: you just want to tell the whole world which you are in a way by being on this forum.

I'm not too bad thanks.  I've booked a Baltic cruise for the end of May and may even see Mr Putin in St Petersburg and be able to share an ice cream on the beach in Germany with Angela Merkel. 

Once again, I'm so pleased for you both and please give your Mum a hug and kiss from me for Mother's Day.

Take care.

BB x.

 

Mum has carcinosarcoma of the uterus

24 Jun 2019 13:49 in response to Battling Babe

Hi my mam had a hysterectomy and doctors said its spread to lining and graded it 1b high grade anyone knows what this means plz im at my wits end she fought kidney cancer 7 year ago ramoved kidney now this x

Mum has carcinosarcoma of the uterus

24 Jun 2019 14:57 in response to Xenaprincess

Hi Xenaprincess,

As far as I understand, if doctors are using the FIGO scale, 1A means her tumour was caught early, was confined to the uterus I.e. hasn't spread and was bigger than 5cm.  High grade means its a relatively aggressive type and more likely to recur. They've caught it early but may suggest radio and/or chemo because it's high grade.

Have you spoken to doctors yet? They should explain it all to you and answer any questions you have about treatment.

Keep in touch. It's a scary time. 

KT

Mum has carcinosarcoma of the uterus

24 Jun 2019 21:40 in response to ktktkt

They done a cat scan found something on spine and liver so done a mri today it was like a blur ro me wen they said uterine carsinosarcoma going on about clear cell carcinoma then graded it 1B my head is a mess x

Mum has carcinosarcoma of the uterus

29 Jun 2019 12:47 in response to ktktkt

They done a cat scan found something on spine and liver so done a mri today it was like a blur ro me wen they said uterine carsinosarcoma going on about clear cell carcinoma then graded it 1B my head is a mess x