Time Between Recurrences

7 months 1 week ago #61901 by pemquid
Replied by pemquid on topic Time Between Recurrences
I just posted about recently being found being all clear now for 12 years, but thought I'd post here too.  I only had one recurrence, which was same type as the initial tumor (low grade papillary). It was at the 2-year point after the first tumor, and I was very disappointed because I was looking forward to less frequent check-ups. I then had a full course of BCG treatment after the TURBt, then the usual follow-up schedule. I've been on annual for quite a while but urologist says I don't even need that now and could drop check-ups. I only had the single recurrence and not multiple.  We compromised by going to a 2-year schedule, which he said a lot of others in my situation opt to do before eventually stopping the cystoscopies altogether.

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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9 months 5 days ago #61789 by jwood108
Replied by jwood108 on topic Time Between Recurrences
I was first diagnosed in 2005 with a single low grade tumor.  My Doctor removed that and just had follow-up Cystoscopy's.  18 months later a few more tumors popped up so I underwent BCG treatments.  I did 3 month, then 6 month, and finally yearly Cystoscopy's and was all clear until November of 2022.   Another couple of tumors, CIS this time, and a round of BCG.  Follow-up Cysto found a couple more spots so currently doing a second round of BCG.  
After 10 year clean, I asked my Doctor why continue with the yearly scopes.  He said, "it's cancer, why wouldn't you?"  Glad I listened to him.  


Good luck and keep vigilant.......

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9 months 2 weeks ago #61779 by DougG
Replied by DougG on topic Time Between Recurrences
BigRIJoe,
Doug was initially diagnosed and had his first TURB in May 2001;  subsequent TURBs were:
Dec 2004 (42 months)
Feb 2006 (14 months)
May 2007 (14 months)
Mar 2008 (14 months)
Dec 2008 (10 months)
Mar 2016 Removal of left kidney (7 years 3 months) due to bladder cancer in the kidney
No TURBs since 2016.  Still having regular checkups every 6 months.  
Sounds like you have gone longer between recurrences than Doug did initially.  I still remember saying to the doctor on that 10 month recurrence "This is too soon."    Most import advice - keep your regular checkups, don't back down!  Follow your doctor's advice, get a second opinion when you feel you need one.  Keep living and enjoying your life!
Anita

Anita
Forum Moderator
Caregiver

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9 months 2 weeks ago #61778 by Alan
Replied by Alan on topic Time Between Recurrences
I just wanted to confirm your post is being seen. However, I am fortunate that I have never had a recurrence. You post does validate the need to still have scheduled appointments for whatever interval (mine are now yearly) or situation we are in.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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9 months 2 weeks ago #61776 by BigRIJoe
Time Between Recurrences was created by BigRIJoe
I was initially diagnosed with a HG stage o papillary growth in 2016. 36 months later had a recurrence: HG  stage zero papillary tumor Had another recurrence at 42 months in February of this year. 2 HG papillary with "a flat CIS tumor How does the intervals I've experienced compare with others in this group's segmant?

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