Thank you to everyone who replied to my original post about my kidney tumour.
So I saw the consultant today, who thankfully was a very pleasant chap, the tumour is benign, however, he couldn't guarantee that it doesn't contain small pockets of cancer. As soon as he said that, my mind was made up and I've decided ho have a partial nephrectomy to take the tumour and part of the kidney away. Had I not already have been living with ET and the newly discovered TET2 mutation, I may have thought twice about it. Incidentally, I had my 3 monthly haematology telephone appointment and apparently the significance of the TET2 mutation is unknown, which is a bit odd as there's lots been written about it! 🤷♂️
Ian
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Trueblue8
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Hi Judy, nice to hear from you. He has kindly put it through as an urgent case as I need to be fit for Kilimanjaro next Feb! He thinks early August 🤞Ian x
Hi Ian, think I would have made the same brave choice and it's good that you haven't had that choice taken away. Just in time for the new footie season! I wish you well.Sue
Thank you Sue, that's much appreciated. I think without the added complexity of the blood cancer and mutations, I may have adopted a watch and wait but I can't take the risk of complications further down the line.Yes, hopefully it'll get done before the football season so look forward to being at opposite ends! 🤣 x
Glad to hear that the tumor appears to be benign. I would agree that this is a logical decision to take it out anyway.
That is a bit of an odd response from the hematology consultant. Is this doc a MPN Specialist or a regular hematologist? I would expect a bit more knowledge from a MPn-expert doc.
Thank you for your reply. There are specialists within the Haematology department, which is why I transferred to this hospital. However, I get the feeling that this particular consultant may not be. I've been referred to the genetics team, so hopefully they'll be able to answer all my questions.Ian
Suggest looking into transferring to one of the MPN expert docs. More likely to get your questions answered that way. hope you get all your questions answered soon.
Hi Ian , I just saw your post . I had a partial nephrectomy in 2020 . I was sent for a whole torso ultrasound in hopes of finding out the reason for my 1.4 million high platelets . Well, they found a 4 cm tumor on my right kidney. I had a biopsy and it was malignant. Because the tumor was very close to the liver I had to have a rather large side incision. Needless to say recovery was much longer than if it had been a laparoscopic surgery . To this day bending gives me a bit of trouble, but I push through and do most activities, including hiking . I’m 64 in august . Hoping your recovery is smooth and I’m sure you will feel better knowing there’s no malignancy inside you. I go for half yearly ultrasounds to check that the tumor site still has clear margins and nothing has grown back . Oddly enough, I am one of those people who has to be grateful that I had high platelets, otherwise no exploratory ultrasound would have been performed. Good luck Ian !
Thanks for your reply. Same here, I've been having abdominal pain for some time, which was why they did the scan! Whilst mine is benign, as soon as the consultant said it may still contain pockets of cancer cells and could grow quite large it was a no-brainer to get it removed! Apparently it's in a slightly tricky position but I'm sure it will be sorted by keyhole surgery.I'm climbing Kilimanjaro next February, which he's said I'll be ok for - hopefully surgery in early August 🤞
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