So today I went for my forth PET scan. I had one at St Georges when I was more mobile and before having the Radiation treatment last year and this will be my third at the Royal Marsden in Sutton, the others taking place in February & May this year.
The last Scan showed that I still had a hot spot showing where "George" the tumour AKA a Solitary bony plasmacytoma of the left mandible had been busy eating bone and teeth roots away.
That could have been because of a side effect of the radiation. New bone needles were growing through my gums and digging into my tongue causing inflammation and a lot pain when I swallowed or tried to go to sleep.
The facial reconstruction team broke these off, so I'm hoping now that the inflammation from that has gone that the tumour is cold, and the last hotspot was just the side effect of the healing process.
The last two PET Scans have also shown that I have multiple sites of polyarthropathy which literally means "disease in many joints" for which I have been referred to the Rheumatology department and have had additional X-Rays of all my joints, specialist blood tests and specialist CT scans of my hands and wrist.
I have an appointment in September with the Rheumatology consultant although the specialist CT scan at Queen Marys in Roehampton was in early July some nine weeks before my next appointment.
The latest PET Scan Report will be available in 3 working days. However because I'm not currently receiving Radiotherapy Treatment from the Royal Marsden and effectively my consultant at the Haematology Department at St Georges has requested the test, they will not upload the report to the My Marsden app which holds my medical information.
I find this completely insane, I have to request a copy of the report about me from my haematology consultant or request it under some kind of freedom of information protocol from the Subject Access Request (SAR) Team at the Royal Marsden.
My appointment with the Haematology consultant is in another month, and for my mental well being I want to know what the report says as soon as possible. If George (my Tumour) has gone and my jaw is no longer hot, that means I'm in Complete remission which means all signs and symptoms of cancer have disappeared.
I know the cancer will still be in my body and having had the Solitary Bony Plasmacytoma that if and when the cancer next presents itself it's likely to be in a form of Myeloma.
There are various stages of Remission which is the term for the decrease in or disappearance of signs and symptoms of cancer.
Partial Remission is where, some, but not all, signs and symptoms of cancer have disappeared.
In Complete Remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. This is what all cancer sufferers want to hear.
From my point of view I just want to know which way my path is going. I would like sight of the report so I can inspect it and have logical sensible questions to ask when I see all three of my consultants, and there is a reason for that.
I have had a tooth removed and biopsies taken twice, they then also took two biopsies via my neck into my mandible and a number into my lymph glands in my neck and they still could not determine if George's (The tumour) was cancerous or not.
So being at the limit of what they could do using local anaesthetic, finally they had no option but to operate on me under a general anaesthetic and take a much larger section of jaw for sampling and testing.
I was referred by the Maxi-facial department to the Haematology department for further testing at St Georges and my sister and I sat there and the consultant opened with "Well you know you have a form of Blood Cancer" and both of our heads physically shot back as if we had both been sucker punched.
The Consultant looked shocked and she asked "has no one told you this?", which we confirmed. The results of the 4th lot of biopsies was still outstanding, when I saw the Maxi-facial consultant last, and nobody had informed me. She looked extremely distressed and tried to recover from it, in fact both my sister and I felt quite sorry for her.
So I don't want to go into a consultation blind again and the Royal Marsden Guidance leaflets talk about looking at your results so you can ask questions, well how is one supposed to do that if they will not provide you with a copy so you can prep yourself?
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