Sarcoma Diagnosis Friday - What next?

Hi Sierra.  Your husbands story very much similar to my husbands.  Feb last year back, kidney pain and suspected stones.  CT scan clear but for incidental 2cm enlarged iliac lymph node.  Urology took over and suspected prostate cancer although PSA and examination did not flag up.  Had prostate biopsy, clear.  Eventually decided biopsy lymph node.  September confirmed diagnosis leiomyosarcoma.  Was refer to QE hospital birmingham Sarcoma and was under two consultants, Sarcoma and Utology.  Surgery was mainly led by Urology and this was done in November.   Surgery was a success in as much Sarcoma removed and escaped with just urethral construction.  The sarcoma was 5.8cm at point of surgery so time is of the essence to get it out ASAP, unfortunately it took 7 months in total to be diagnosed and the tumour is growing during this period.  We on 3 monthly scans now, first one due in two weeks time.  All I can say is push, question and push again and again don't sit back and wait for them.  Demand to be referred to a Specialist Sarcoma centre ASAP.

Hi Shaba, Thank you so much for replying - I am very grateful! May I ask did you husband require any Radiotherapy or treatment after removal, and was ther any spread at all? I think this is what we are most scared off at the moment. When we went for the kidney ultrasound they were pretty confident that the cysts were fine but she said they was a very mark that she couldnt work out what it was, but we never heard any more on it, so we are really panicking now :-( Did it take long for your CT scan to check if there was any mestasis and your referal? Sorry for all the questions but weve just been left in limbo :-( 

Hi Sierra l.  It's been a ling drawn out process.  One that we have had to push and push with constant ringing secretary.  Knowing biopsies been with consultants within days of being taken yet weeks to discuss in MDT and make decisions   Sarcomas are rare and I don't think they always suspect sarcoma unless lump found externally.  With us lit was enlarged lymph found in Feb.  Suspecting cancer they needed to find a primary.  CT scan did not show anything.  So they assumed prostate as this bring nearest organ to the lymph node.  Eventually I'm July they decided to biopsy lymph and do PET, only lymph had take up.  In Sept they finally had us in and told us it was leiomyosarcoma.  The urologist was pretty crap, saying you got cancer, don't know anything about this cancer or how you treat it, and going to refer you now to Soft tissue cancer specialist.  This is 7 months on from 2WW in Feb!!!! We got to see Sarcoma within a 2 weeks and then had to do another scan pelvis and chest because referral was sent with scan from July!!!  Operated on within 6 weeks of first consultation.  We see radiologist Oncologist this Friday ro discuss adjuvient radio but tbh both sarcoma and urology consultants were not overly supportive of this, in our case where the tumour was the damage radio can do outlays tge benefit.  Told radio does not guarantee no recurrence.  Ultimately it will be our decision.  Upshot is they never found a primary and we may never know.  To date we only been dealing eith lymph node, which in itself the sarcoma consultant had never seen before and would never have expected it.  Husband has been a talking point with most clinicians we seen.  Limbo I get you, God do we get you.  Read your story to husband and his jaw dropped and he said that's was us.  You got make yourself heard and bang on door and push. Go through PALS now please please start making noise

WIth regards to you ... I cannot understand how they don't know what typeof sarcoma you have from histology ???? I would put in a request for the histology report.  You have a right to a copy.  You need to send electronically with ID and utility bill and they have to give to you although this could take upto 40 days.  Oddly we just requested ours last week for our record.  We missed a registered mail delivery yesterday so expecting it today Ithink.

They say its because not all the histology is back yet, and they can only give an initial diagnosis of Sarcoma and when all the histology is back along with the additional scans etc that it will be reveiwed by the All Wales Sarcoma MDT - I was hoping we would have had some contact by now from a nurse or cancer person..... up until Friday we just though it was a benign tumor the urologist was so confident when he came out of surgery that it didnt look like cancer and has been really reassuring that it is so unlikely to be cancer all the way through, so we are super shocked :-( 

I am so sorry you went through so much to get your diagnosis xx

We still up in air to be honest with so many unanswered question.  Compiling a list for oncologist Friday.  Husband was going yo have bladder, prostate and 40% chance bowel removed at surgery to awake with 1 ir even 2 bag and told they found primary in semenial vessucle .  Awoke and it didn't happen.  He came out with bladder prostate and bowel intact.  Discharge letter said only had partial cystectomy and urethral reconstruction.  Saw sarcoma consult 4 weeks post surgery.  Told high grade involving seminal vesicle??? Confused as nothing in Discharge suggested seminal vesicles removed   saw urology surgeon last week ... seminal vesicles were removed but histology negative ??? And ... has not had partial cystectomy, they just to cut bladder open, checked it out  and restitched up.  .... can't write it, confused, angry.  Don't know what believe anymore and question and check everything we been told   why I ordered copy histology.  Arrived today... seminal vesicles negative !!!

Again please don't sit and wait.  Get on phone and push for answers, don't trust them to be upfront and on the ball, check and recheck and don't be afraid to ask, push, demand.  Keep me posted please, with you in this battle xx 

OMG I cannot believe the lengths you are having to go to! Surely this is not ok, I feel awful for you! Thank you I will wait a few more days and get in contact with the Sarcoma unit if we have not heard ..... It feels awful being told oh you have cancer but we have no answers for you and now you can just wait! 

Its crazy! I really hope you start to get some answers soon xxx

He had catheter and urethral stent removed Thursday.  Did not give him antibiotics.  Friday started convulsing and vomitting with high temp.  Admitted and got sepsis! E coli bacterium. Typical risk if have indwelling catheter for long period.  Should have been in 6 weeks but ended up 9 due to xmas break and fitting in with their clinics!!!  Was Discharged Monday , just returned to hospital now with chest pains.  I don't know if I'm coming or going right now.  Head is all over place.  Think I be ringing pals myself in next few days.

Hi Sierra 101

I had a sarcoma diagnosis nine months after I had first visited my doctor . It was only when I was referred to the local hospital that any positive action took place. Unfortunately the doctor in the hospital tried to remove my tumour thinking it was a cyst only to discover it was a Cancer 

I was referred to the Sarcoma Unit in the April I was operated on in May of that year then six weeks of radium treatment that is nearly two years ago now. I am checked on every three months by the Sarcoma unit the cancer was assessed as an aggressive type so fingers crossed nothing has come back to haunt me especially with the doctor cutting me open think it was a cyst.

There are strict guidelines for the treatment of Sarcoma which are carried out by Sarcoma Units through out the country .

I am sure the Sarcoma Unit will be in touch but there is absolutely nothing wrong in chasing it up .

I would  advice only look at Sarcoma UK and McMillan sites for information on your illness 

Best Wishes