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Hello all. I have just been diagnosed with a T1 mixed low and high grade. First turbt did not go well now booked for a second. Has anyone else had 2 surgeries only 2 months apart? Kinda scared and unsure right now and need some help with this. Thanks for being here.
We are here for you, do not hesitate to ask us questions. We are have experience with bladder cancer which we all wish we did not have. Being scared is what we all went through, but remember we are all now in your corner to assist.
All the best,
JackI have had two surgeries three months apart. Better to get the surgeries and have the uro scope out the whole bladder thoroughly while you are asleep. I recall my uro telling me that in addition to the tumours, my bladder simply looked red and raw and awful. Inflammation and tumours can be ugly looking. But with treatment that changed. Bear in mind that bladder cancer is a highly recurring disease – up to 80% of the time. So perhaps your circumstances are not uncommon.
You’ll want copies of the pathology report for your records. You’ll also want to be dealing with a urologist and nurses who do this everyday. Six years ago I was where you are – at the beginning of a journey that seemed somewhat off-putting and which has had some scary curves and bumps along the way. But be encouraged: most people who have turbts and BCG treatments do very well and find themselves only needing cystoscopies, initially every three months, then semi-annually, then annually as time goes on. Some of us present a few more challenges along the way, but having highly regarded urology teams caring for us often makes a big difference.
And we are here for your support and encouragement and even some education, perhaps. Because we have all been helped by others here and understand the wonderful comfort of not being alone, and not being all that unique in this journey (though there are some very unique people on this site!!!).
Greg
Hi Jtarnow! Welcome but sorry that you have reason to be here.
I’ve had 2 TURBTs but they were 2 years apart not 2 months. That being said it doesn’t make it any easier. I too, was very scared especially in the beginning. It takes a while to get your head around the fact that you have cancer. That is the disease that everyone hates to hear about. The others have given you excellent advice. Take it one step at a time, one day at a time or even one minute at a time if you have too. Don’t hestitate to visit often and ask lots of questions.
We’ll pray that this second TURBT does the job and then it will be better. Let us know how it goes. ((((HUGS))))
As far as I know, it isn’t uncommon for some one to have a second TURBT soon after the first.
I had a TURBT about a year ago that was then followed up by another 6 weeks later.
As it was explained to me at the time, it was so they could “restage” me. The first surgery was to remove my initial tumors the second was to make sure that the doctors had diagnosed me with the correct stage, T1Hg. The risks of “understaging” can be quite significant and serious.
Besides, as surgeries go, a TURBT is not as bad as others that some have to undergo. In the long run I’m glad that I did agree to it.Chris
Thanks to all for your responses. Please know that it is greatly appreciated. Even though I have a wonderful support system at home(wife and 2 kids) it is nice to know that I have another group behind me. I will most certainly let you all know how I am doing after the next surgery. It is nice to hear that this is not unique. Thanks again and I will definitely be asking more questions.
Just wanted to say hi from a fellow Edmonton area Bladder Cancer survivor. I was diagnosed just over 2 years ago and remember clearly the terror and confusion I felt. The early weeks and months were challenging as I tried to figure out what this diagnosis meant and how my life would be impacted. I didn’t use the word cancer for a long time. I spoke only about surgery and tumors. I wanted info and then found it overwhelming when I got it. But I can assure you it gets easier. Cancer is no longer in the forefront of my mind. It is just an occasional inconvenience.
We have formed a small committee of volunteers to share info, help with the Awareness Walk scheduled for Sept and start a support group for survivors and their families/ friends. I am excited to report we are just finalizing the location for the support group and will host our inaugural meeting in July. I have found it immensely helpful to connect with others who have been through it and hear firsthand how manageable this disease is.
Take care and know you are not alone.
BetteHi Jtarnow
I am just finishing up my second round of BCG treatment and even at quarter strength my reaction to it is violent to say the least. No sleep at all for the first 24 hours after treatment and the burning is non stop. It takes me about ten days to get over one treatment and they are once a week so they really take a toll. The Dr. postponed the 3rd treatment to give me a chance to recuperate from the first two. My concentration and thinking ability was shot and even going on line to pay bills was a struggle but I’m feeling better now and am catching up on everything.
To answer your question regarding two surgeries close together I had two surgeries about 5 weeks apart to remove one tumor each time. Since then I have had one cystoscope showing no new tumors and am hoping the next one is also all clear.
Believe me I know what that scared feeling is like when the Dr. said I needed a second operation I thought that life as I know it was gone forever. But I’m still optimistic and believe I will have a more normal life in the not to distant future.
I hope everything works out well for you.Mike
Jtarnow,
I sent you a PM with more info – but not sure if it went through.
I think that I am in the exact same boat and position as you. I am 42 and my diagnosis was confirmed 3 weeks after my first TURBT, with my second now scheduled in Edmonton on the 24th of June.
I live in Yellowknife, and have the fun of traveling to Edmonton quite often now. as I get more info on the road ahead, I think I might end up relocating to Edmonton.
like you, I also have wife and 2 kids – (19/21). Mine being older makes it a little easier to tell use the word cancer, but it also means that they know more about the meaning of the word.
Rob
Well….. Second TURBT into the books. No catheter after this surgery thank goodness. Have noticed a considerable amount of pain without the catheter. Did not have that last go around. Now waiting on pathology to determine if it will be BCG or RC. Keepin my head up regardless. Shout out to Rob from from Yellowknife who will be in Edmonton later this month for his TURBT. Lookin forward to meeting you. Thanks again everyone for your support and kind words and I will let you all know the results!
No catheter is good…the discomfort will ease off. Wishing the best outcome for you on the path report.
Stay strong, stay positive…keep us in the loop.
Rick
Path report is in…..T1HG. Non muscle invasive. What an immense relief!! Will be starting first round of BCG in late July early August.
That’s great news Jtarnow… Many of us have had BCG treatments. Below is a link that provides some information on the treatment and in my case the hospital where I had mine provided a photocopy of the very same thing at the time of my first. Some have a strong reaction to BCG but I believe most tolerate it fairly well…having some discomfort during first voiding after treatment and even for a day or so following is common. I’ve had many treatments over the last 24 months because of a couple of recurrences. I’m please to let you know that I’ve reached 12 months cancer free. I asked for BCG every 6 months (2 treatments over 2 weeks) as a maintenance program for awhile…my next is Oct 2014.
By the way, the instillation takes all of 3 minutes!!! From what you’ve tolerated so far, it will be a breeze.
http://www.uroinfo.ca/brochures_bladder/BCGforBladderCancer.html
Hope this helps…stay strong, stay positive…stay in the loop.
Rick
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