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  • 3rd time for surgery

    Posted by slocapo on November 14, 2013 at 1:11 am

    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
    dieseldoc replied 10 years, 7 months ago 4 Members · 9 Replies
  • 9 Replies
  • dieseldoc

    Member
    December 12, 2013 at 2:28 am

    Slocapo. Don’t worry you will not lose your hair with BCG treatments! I have been dealing with the same thing for a lot of years, it has just become routine for me. If you keep on top of it and get the tumors took out when their found it will become as routine as a pap smear. good luck and come see use for questions and pep talks!


    T1,NO,MO battling bladder cancer since 2005
  • slocapo

    Member
    November 30, 2013 at 9:40 pm

    I quit smoking 11 years ago… my dad smoked and died of testicular cancer years ago. I stopped dying my hair when they told me people working with hair dyes ( some ) or leather hides.. I just figured it would be a good time to just go grey and love it..

    I have to figure smoking is my reason for bladder cancer. I am so glad I quit.


    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
  • slocapo

    Member
    November 30, 2013 at 9:33 pm

    Thank you for the great encouragement! This is a wonderful site that has been set up for us all.. questions, answers, concerns and a new extension of a family in a way


    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
  • sara.anne

    Member
    November 30, 2013 at 5:48 pm

    So Sandy! You met Knut from Norway and Anita from Tennesee!!

    I agree with Ann that you are probably headed for BCG. This is MUCH DIFFERENT from traditional chemo with none of the systemic side effects that chemo has.
    Of course there ARE some effects….you can read a lot about BCG on this Forum…but it is very “doable.” Been there, done that. Now cancer-free for five years.

    Good luck to you….you can be there for your husband and he will be there for you!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • pemquid

    Member
    November 30, 2013 at 4:32 pm

    Never smoked, never worked with dyes. However, my dad had bladder cancer when he was in his 70s and was a smoker. He had one recurrence but was up to annual checkups at the time he died at age 84 due to lung cancer (unrelated to bladder cancer except for the connection of smoking to both). Both my parents smoked and I was exposed to second hand smoke growing up and of course later as well since there was smoking was everywhere back in the “old days.” Had first tumor when I was 64. How about you? Smoking? Family history?

    Where we are in Maine: I’m in Bangor and we have family in Portland.

    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.
  • slocapo

    Member
    November 30, 2013 at 4:07 pm

    It is a small world… I was on the chat line a few Sundays ago and spoke with a person from Tenn. and at the same time Oslo Norway…. Maine which part? I have a stepmom in Wayne Maine and friends in Portland..
    My second surgery was a year to the day of my first…. then this 3rd time was less than 6 months… I hope they stop growing in there…. but I also look at it this way… better to grow in my bladder than out of it…
    Did you smoke? Did you work with dyes?


    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
  • pemquid

    Member
    November 30, 2013 at 3:57 pm

    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.
  • slocapo

    Member
    November 30, 2013 at 3:26 pm

    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
  • pemquid

    Member
    November 30, 2013 at 12:22 pm

    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.

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