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Sarcoma and secondaries

6 Mar 2018 21:20

Hi, I’ve just been diagnosed today with an abdominal mass which has turned out to be a sarcoma. Ct scan has identified additional lesions on the lungs, liver and spleen. This has really come from nowhere and I’m reeling. I haven’t seen the consultant yet to discuss where we go next (appointment awaited) and I know I’ve been referred too. I honestly haven’t stopped crying because I knew it was cancer, I just didn’t think it had spread. All my bloods are normal apart from the C19-9 which is slightly elevated. 

I have read this is the hardest cancer to treat so no idea what happens now. I just don’t know what to do. I’m floundering big time! 

Re: Sarcoma and secondaries

8 Mar 2018 22:44 in response to Julia62

Hi Julia, 

I'm really sorry to read that your abdominal mass turned out to be a sarcoma and additional lesions have been found on your lungs, liver and spleen.

I know you've been looking in to your diagnosis so I just wanted to let you know that our cancer nurses are only a phone call away if you would like to find out more or just chat to someone about what you're going through. Their freephone number is 0808 800 4040 and are available Monday - Friday between 9a.m - 5p.m.

For the moment just try to take each day at a time and remember that we'll be here to support you on your journey.

Kind regards, 

Steph, Cancer Chat Moderator

Re: Sarcoma and secondaries

8 Mar 2018 23:30 in response to Julia62

Hi julia, 

we seem to have the exact same thing going on, I’m going in tomorrow for biopsies if my liver and other tissue, my tumour is in my abdominal wall to the left of my navel, diagnosed last week following intense pain, biopsies and scans,  bit more waiting for me to do but let’s kick sarcomas butt together!! 

Carh x 

Re: Sarcoma and secondaries

9 Mar 2018 00:31 in response to Cath39

Hi Cath, 

Thanks for replying, I've been all over the site and there doesn't seem to be many sarcomas about!

Mine is also on the left but not sure yet where it's attached as I've only had the diagnosis over the phone and no one has yet gone through the ct scan with me. Hopefully that will happen next week. 

So far I'm not in pain apart from the odd stab in the back round about where my spleen is. Of course it could be radiated pain, who knows! But as it doesn't last for long it's manageable. As soon as its not, I'm after the Drugs! 

Yes, absolutely lets kick sarcomas butt. I have "affectionately" called mine Ripley. I'm not sure what that says about my coping strategy, but unless someone shouts "section" I'm sticking with it! 

Julia x

Re: Sarcoma and secondaries

9 Mar 2018 00:33 in response to Cath39

Hi

I have sarcoma that has spread. Originally had hysterectomy as thought to have fibroids but was cancer. Have had 1st chemo, 5 to go then more scans.

I am feeling positive and am slowly realising that it is what it is and am trying to 

get on with life although I feel exhausted not only from recent treatment , but also 

I have deficits from brain stem surgery 4 years ago (benign carvenoma removed )

mainly balance and fatigue deficits.

Hoping to beat the **** out of this........wishing the same for you all

Donna

Re: Sarcoma and secondaries

9 Mar 2018 00:34 in response to Moderator Steph

Thanks Steph Happy 

Re: Sarcoma and secondaries

9 Mar 2018 00:40 in response to Donka

Hi Donna, 

This morning I felt really alone - not because no one cares, far from it, the outpouring of love and concern has floored me, but because sarcoma seems to be really rare and I thought no one else would have the same experiences as me. But after reading yours and Caths posts I feel much more encouraged. And although I also feel in a little bubble, I'm looking ahead with a bit more certainty. After all, if we are all walking on the same path we aren't alone are we? 

Julia x 

Re: Sarcoma and secondaries

9 Mar 2018 07:49 in response to Julia62

We are certainly not alone, and I’ve named mine too he’s “Fred” lol x 

Re: Sarcoma and secondaries

9 Mar 2018 15:11 in response to Julia62

Julia,

Thanks for your reply. I get what you mean about feeling alone,I feel it too although like you I have lots of love and support. Last night, out of the blue, my shoulder length hair started to come out in huge clumps. I knew it was coming but the shock I felt really floored me. Tonight I’m going to get my husband JIM to give me a cut with the hair clippers and bandana at the ready, deal with it. I’m keeping in mind that it’s temporary and hopefully it will be just another inevitability dealt with.

My 2nd chemo session is Tuesday and I still have 4 more after that so hoping nothing else falls off or out

Thinking of you Julia

Best wishes from a very cold but lovely Glasgow❄️

Donna

Re: Sarcoma and secondaries

9 Mar 2018 17:07 in response to Donka

Donna, 

I had a chat with my friend about hair, mine is already short but I going for a preemptive strike this week and taking it a bit shorter. She told me a friend of hers lost her hair and it grew back much stronger! So you never know, you may end up looking like the LOriel advert Win win

I've had many happy holidays in Scotland, but I bet you have a quiet laugh at us soft southerners in London with out 2cm of snow! 

Take care,

Julia

Re: Sarcoma and secondaries

9 Mar 2018 17:14 in response to Cath39

Cath, I hope the biopsies went well today, I've been thinking of you

Julia 

x

Re: Sarcoma and secondaries

9 Mar 2018 19:11 in response to Julia62

Julia,

i have just had a number 3 with the clippers and look like a skinhead.

A few well placed tattoos and I would look like a right Ned.

Also I’m not as blond as I thought I was well it’s done now but even the short hair is coming out so won’t be long until I’m polishing my bonce

This is the first bad snow I have seen in years.....granted it’s cold usually, but, this much snow....unusual for Glasgow. I’m all set for round 2 of chemo on Tuesday, only hooked up for 1hour so not too boring.

Donna

Re: Sarcoma and secondaries

9 Mar 2018 21:48 in response to Donka

Donna, I hope you have a warm hat! 

Good luck Tuesday 

Julia 

Re: Sarcoma and secondaries

10 Mar 2018 07:48 in response to Julia62

Morning julia, 

the biopsies are all done, I won’t say I’m fine as that would be lying, I’m super sore and dosed up to the eyeballs on meds, has a good chat with my consultant and going to have a few scans next week, a bone scan, full body scan and another mri, would seem “Fred’s” having a glorious time in taking over my body, this journey is very emotional which is new to me as I’m normally a very hard faced person who just gets on with things, I cried leaving yesterday morning seeing my little one all tucked up in bed and me going off to get punctured all over! 

How are you feeling? I’m going out to lunch today with friends and get my nails done, 

 

cath xx

Re: Sarcoma and secondaries

10 Mar 2018 08:47 in response to Cath39

Morning Cath,

Good for you, you get your nails done, hair done, pedicure....full works for you! And friends are fabulous aren't they? When I had my scan results last Tuesday mine literally dropped everything. One even jumped on the train from Eastbourne (I'm in London). 

I had a call from the Marsden yesterday, I will be there on Thursday for a chat with the consultant and biopsies need to be arranged, it appears Ripley is not behaving as she should either. The dots on my lungs/spleen/liver don't appear to be the same and they are thinking I have a different cancer there, or they even mentioned TB! I thought that was a disease of yesteryear or the third world. However my daughter, who is a health visitor, said its rife in parts of London. 

i have a 2 month old granddaughter, very long awaited and very much loved and I understand. For me, it's like I am in this bubble on an escalator and everyone around me is running to keep up and I'm bouncing along without stopping. So parts of me are optimistic thinking well if it's not spread and its TB then that's a result, and parts of me are thinking Holy Cow 2 different cancers?? How does that work?? But the nurse I spoke to yesterday was fab and made me feel very safe. If thats the right word. Whatever they decide to do, I am doing it. Drugs will be available, and we will both get through these horrid few weeks of uncertainty one day at a time. They will biopsy the liver and Ripley and compare the two, and then we know. But that won't be next week so I will make sure I have plenty to keep my mind going and stop me imagining Armageddon going on in there in the meantime! 

Stay strong Cath...we both have a great deal to manage but a great deal of support and love around us we can draw on. 

Add a facial to the list too 

Julia xx