Entering my 13th week with no treatment !

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So, I find myself about to enter my 13th week without a definitive diagnosis or any sort of treatment plan.

My consultant was supposed to ring me when Basingstoke consultants have decided to take me on. Seems not decided yet.

I seems pretty likely that I have Primary Peritoneal Mucinous Adenocarcinoma. PPMA 

Does anyone else have this cancer?

A rare cancer and this is perhaps why it's taking so long.

Apparently my PET SCAN has been reported but not yet available.

In the meantime, I feel unwell and anxious.

Has anyone else with this or similar cancer type ( ovarian, tubal or perhaps other gastro - intestimal origin )  received treatment at Basingstoke or maybe  The Christie in Manchester,  and if so did you receive HIPEC , and what was the outcome? 

  • Hello Chhekkat. I'm from California. I was also diagnosed with Primary perotineal cancer. Stage 3c. I was lucky enough to be a good candidate for HIPEC. Along with the 8 rounds of chemotherapy, Hipec and Lynparza I'm happy to say my cancer is still sleeping. For me it was a life saver. I hope this helped in some kind of way. Take care

  • I'm stage 3C also.

    I have been told I'm a good candidate for HIPEC, whatever that means precisely....

    How long have you been cancer free.

    I have a large 18.5 cm mass on my r.ovary and a few peritoneal metastisis.

    Did you have a tumour?

  • Ah I've read your profile now.

    Gosh you've been through a lot of ops.

    Your post has given me some hope.

    So many thanks and good luck to you !

  • I was told I’m terminal on Tuesday morning by a letter I should have received on July 30th but I’m glad I didn’t know then. My diagnosis has taken bloody 7 months ffs grhhh PoopThumbsdownAlienSkull

  • It will be 5 years December 23, 2024. And yes I had tumors. Do you have ascites? 

  • Yes there is an entire “rubber ring” of ascites around my middle and my back and I also have a massive fibroid which measures 13 x10x11cms Face palm♀️So I’m pretty knackered. My operation in Basingstoke isn’t until 2nd October so I’ve asked to be drained in Swindon hospital but nothing has happened yet doh … it’s all really slow moving and frusWearyating WearyPersevereCrySee no evilRolling eyesRolling eyesI’m now staying in hospital until I go to Basingstoke hopefully as I don’t feel well enough living alone anymore…

  • How come the wait is so long?

    It's the fibroid cancer?

    My mass is 18x 15 x 12 cm and I'm told it has to be removed as it's cancer.

    I see in your profile that you state that you are terminal and your consultant says you may not be worth operating on?

    Surely if it's that large it needs to come out as it must be impacting on your other organs and bowels. 

  • I don't seem to have. My tumour is my biggest worry as I am so bloated and can hardly eat.

    I feel horribly invaded

  • Yes that’s the exact problem as I’m still operable but they need to drain off all the mucus/ ascites at Swindon hospital to keep me alive til 2nd October my surgery date in Basingstoke 

  • Well I am glad to hear that !

    Is the other end working okay??

    I also live alone, but I'm not really feeling unwell,  just depressed.