Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Leiomyosarcoma

Danniie05
Posted by

Hi first post, I was diagnosed with a suspected Sarcoma on 4 April at my local hospital and was immediately referred to UCLH. I'd been advised that the treatment plan would be surgery.

 I have a retroperitoneal sarcoma and following biopsy saw the Surgeon on Monday who told me the cancer was aggressive and inoperable. This came out of the blue and was totally unexpected.

I saw the Oncologist next and start 3 x3 week cycles of dox chemo on Monday.

I'm in shock, I was told odds of chemo being successful are quite low.

I'm just 50 and a single parent to a 25 yr old daughter and two boys age 13 & 11. My 13 year old has Tourettes Syndrome and ADHD.

I'm on a lot of morphine because the tumour is sitting on nerves and my right kidney is very swollen 

I'm not feeling well and am incredibly tired and I'm worried I'm dying.

I'm trying to be brave for my family but feel very panicky inside.

Also unsure what to expect from chemo.

Is there anyone in a position like mine where surgery isn't possible.

Any experience, advice, anything gratefully received 

Thanks Daniela xxx 

src60
Posted by

Hi Daniela, sorry to hear about your diagnosis my wifes LMS was not found in-situ as she had an emergency hysterectomy for pyometra and only some time afterwards when her recovery did not go as expected did they eventually find the cancer spread to her lungs.

We were also told this was innoperable and that chemo was often not effective but when they tried doxy it did shrink the tumours but at that point some of the cancer was the wall of a lung - good news they could fix that, bad news no more doxy; next treatment plan was gemcatabine and again shrunk the tumours and so far they do not seem to be growing again, we have been living with cancer for 6 years and the oncologist is amazed.

Hope your children are getting support in school, our son has high functioning autism and is 15 now just about to do work experience - where did that time go.

<<hugs>>

Steve

Danniie05
Posted by

Hi Steve, thank you so much for replying and for giving me some positivity and hope.

I'm so pleased to hear how well treatment has gone for your wife.

It felt like the Oncologist was being negative about the options but I guess he doesn't want to raise hopes.

How did your son cope? My son with additional needs is incredibly intuitive and knew we were holding things back and insisted on being told (as much as we gently could)

My 25 yr old daughter is a staff nurse at Royal Marsden Hospital and this has hit her really hard.

I'm finding I'm putting a brave face on for sake of my family.

Best wishes to your wife, you and your son x

Faithfully
Posted by

Hi Daniela

I'm so sorry to hear what you are going through. My husband has a retroperitoneal sarcoma diagnosed in February. It is also inoperable and aggressive (as assessed by the Royal Marsden) so we are in a very similar situation and it's terrifying. We have a 22 year old  daughter and sons aged 11 and 5. My heart breaks everyday. My husband had 2 cycles of chemo (ifosfamide) in Oxford however this hasn't been suscessful. Sarcomas are so rare I'm told so it's a little unknown as a cancer and does surprise doctors at time. The pain is difficult and my husband is on oxycodone 24hrs which helps. The main focus is spending time with the children... We have taken them out of school for family time. (best decision we made and wish we'd made it when he had more energy).

It can be very lonely as there aren't many people with is no support groups or anything as it's so rare. 1st cycle of chemo was surprisingly OK and he wasn't too tired but was told that was due to adrenaline of actually starting something. 2nd on was tough... But no sickness just very exhausting. 

If you'd like to talk I'm happy to share my number. Also your daughter will be very scared as mine is with no one to speak with who really knows what it's like. I sure my daughter would be happy to chat to her so maybe they can support each other... Just a thought. We live in Berkshire. 

Stay positive and spend time as a family... We pray a lot and will pray for your family too.. Xx

src60
Posted by

Hi ,

At times things have been more interesting, we had a number of times ending up doing homework at the hospital but he is rather stoical. We took the decision to tell him as much as we felt he could cope with as we aware all children are very good at picking up signals and with an active imagination can make things even worse that they really are. We were really fortunate that school was very supportive and two friends went above and beyond - still makes we well up to think of what they did for us.

When we asked him once if he had any worries he asked what if anything happened to me (has a few hospital stays myself), fortunatly we had arranged that Janice's brother and his wife would be guardians - they already have an adopted son and he is very comfortable with them. One heartbreaking moment was when we were driving to the hospital to introduce him to the Maggie's centre and as we drove in he said "are we coming to leave mummy here" - oops.

On your daughter front - bless her for being a staff nurse, we often find nurses joining the forum as they struggle when cancer strikes nearer home.

<<hugs>>

Steve