3rd time for surgery

8 years 1 month ago #45553 by pemquid
Replied by pemquid on topic 3rd time for surgery
Sandy--

So sorry to hear about your husband and that you are both going through such a rough patch right now. I've found that the people on this board are wonderful, so please feel free to ask any and all questions or just come here to vent. When I had my recurrence it was at exactly 2 years out from my initial tumor. I was SO looking forward to switching to 6-month checkups that my initial response wasn't fear or worry but anger that I still had another 2 years of 3-month checkups before me! After being recommended for BCG, I consulted with my MD cousin who's a radiologist specializing in the urinary tract. He confirmed my urologist's recommendation for BCG, and he said that the recurrence was a sign that my bladder "wants to grow tumors," a strange way to phrase it but I guess it describes the situation was in then and you are in now.

Ann

P.S. We're sort of "neighbors," as I live in Maine. There are several other posters from Mass., including the founder, Cynthia.

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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8 years 1 month ago #45551 by slocapo
Replied by slocapo on topic 3rd time for surgery
Ann
Thank you so much for your knowledge and information. I did have surgery the other day in Boston and they removed 5 small tumors. They have always been small and "low grade" but I go every 3 months into Boston to be checked. He told my husband I will have the 6 weeks of chemo. I have not talked to my doctor directly as I was still sleeping when the 2 spoke… I will get my information - Pathology results next week or the week after and go from there. I keep my chin up! My husband had a stroke on Sept 29 and has been dealing with seizures from it.. so my plate is pretty full at the moment trying keep depression from settling in with him… and getting myself back up and running. Thank you again for your great note. Happy Holidays and a very Healthy New Year! Sandy Locapo ~ Mass.

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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8 years 1 month ago #45547 by pemquid
Replied by pemquid on topic 3rd time for surgery
I'm sure you've read that bladder cancer has the highest rate of recurrence of any cancer. Generally the recurrent tumors are of the same type,stage and grade as the ones before, but frequent check-ups are necessary to make sure not only that there are or aren't new tumors but also to check on the stage and grade through pathology reports and other tests.

You don't mention what type of tumors you had or what the pathology report and other tests have found. That makes a big difference in treatment protocols. The "chemo" you mention is probably not truly chemo but more likely BCG treatments which are given initially for 6 weeks and then in three-week doses every 3 months, then every 6 months,etc. in the most common protocol. As I understand it, BCG works to stimulate the immune system and causes the bladder lining to be be able to "recognize" cancerous or pre-cancerous cells and reject them. BCG works best with higher grade tumors, but is often given if you have recurrence of lower grade tumors, especially if the tumors are multiple or large. This is what happened in my case, though I'd only had one recurrence of a low-grade type after two years when the Dr. recommended the BCG. Given how frequently your tumors are recurring, the BCG treatment sounds like it definitely should be done as soon as possible, after you're healed up from the surgery.

On a positive note, I've had no recurrences since having the 2+ years of BCG treatments and have been all clear for over 5 years now. there are a number of other people on this board who have had similar results.

Best of luck!

Ann

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.
The following user(s) said Thank You: dlfuture

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8 years 2 months ago #45495 by slocapo
3rd time for surgery was created by slocapo
Was told yesterday I have 3 more small tumors that need to be removed. I had surgery in May 2012 and May of 2013 and now again 2 days before Thanksgiving… My doctor said we might have to do chemo for 6 weeks after… this time? anyone advice ….. and also why… why do they keep coming back?

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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