Hi
Hope this helps others that may worry like I do and therefore I've posted a link to a thread I started below that details what went on in the past.
i had another cam check today and as before worried sick for a few weeks almost sick last night and this morning was awful but great news, all good/clear and another review in 9 months time.
For any news people here or loved ones that want to see what is possible, a summary below but the link to thread is in detail
June 2017 new gp, routine blood sample, invisible blood, diagnosed with G1pTa, removed on initial lookup, then hard TRRBUT or something like that in August 2017, and other check in Feb 2018 as not feeling well, another scheduled check-in Nov 2018 and one today ie after 9 months and another due in 9 months
I have noted that NICE recommends anyone with G1pTa is discharged if no reoocuren after 12 months but IMO the docs doing the right think
Good luck to all on this site.
Hi gooluckall. Nice to hear from you and great to hear your good news. Long may it continue. Best wishes.
Hi Riley
Many thanks
I just hope people reading our posts help people's minds and arm them with info to ensure they get the best of what is on offer
x
Hello all
Update
Just had another cam check routine at 12 months, all good/clear. Discharged as since diagnosis June 2017 no reoccurrence.
I've had invisible blood in-between I think 2nd year after diagnosis had extra cam check all ok
Just wanted to thank all and anyone else doing a search etc on Google re this G!1pTa also known as pTaG1
Thank you all - I was worried but all ok but will keep an eye on it
Congrats gooluckall, nothing better than an all clear and fantastic you have stayed clear for 5 years. Wishing you continued good health. Hx
It’s always encouraging to hear news of people getting the all clear after several rounds of treatment.
I was diagnosed with pTaG3 snd after two TURGBT’s , a 6 week course snd then 3x 3 month courses of treatment , I now have a 6 month period before next round.
So far, so good!
I have gained great encouragement from the posts in this forum so thank you.
kKind regards to all.
Kiko
Thank you too for sharing and I wish you well.
Why I first got this, other than the shock I wanted more info from the hands of those that were going through what I had or had or had family/etc going/gone through it.
The people here were really helpful and they hit the nail on the head re waiting being one of the most worrying things as I nearly cracked up.
I jacked in my job as soon as I found out I had this thing and my managers were good, really supportive ie hardly asking in questions etc when i sent in a few sick notes and they knew i wanted to be left alone and no procedures to be followed up after two weeks sick leave etc, etc, then i left on my own accord and the best thing I could have done
When I had the cam check done the other day, I had many sleepless nights leading up to the appointment and told the nurse there i was nervous - they were all great.
A doctor told me a couple of years ago i was stressing too much and he is right. He added that too much stress leades to other probs and tried to reassure me it could have been much, much worse.
Thank you all and good luck to all of you.
I hope if someone needs to read some of my expereinces it helps them just like the good people here have helped me along with the NHS
Btw, I just want to add, once you get your appointment if you are like me and want it quicker, look out for cancellations give them your best contact number and if you can turn up a few hours later or next day and someone else can have your appointment and the e to unofrseen reasons etc. you get has not been wasted becuse someone callnecelled at the last minute
I met really nice staff at the Lewisham hospital and Woolwich hospitals.
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