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Thank again for all the information. I am taking him to his first treatment and he has booked the days off work. He had his shift switched to afternoons and he feels that will give him extra time the next day. My brother in law is going to drive him to his remaining treatments as he just retired. We have a list of questions for the nurses but thought I would ask here as well. My husband is concerned about tb and others. His main concern is our daughter is having our first grandchild in a couple of weeks. Is this something he has to worry about he doesn’t want to put her at risk. Is it just for the day or is it during the entire treatment period we have to worry about this? I know they give instrutions on the bleach etc. He is just concerned. Louise
Your husband has nothing to worry about with your new grandchild. The only thing the nurses will recommend is that during the treatments and for 6 weeks following is that a condom should be used for your safety.
He can hug, kiss, and cuddle his new grandchild.
Congrats,
JackWhat a great site to get “real people feedback”
I have had two TURBT’s in the last two years and both biops come back with Lamina Propria with “some” Muscularis proprai present ( T1)
My uroligist wants a RC and I want more biop’s and TURBT every 6 months
Ready all the info on RC’s leaves me a bit puzzled if T1 is a GO for RC or should I try for 5 more years of TURBT’s with a Go for RC at the T2 stage ( if it goes to T2)
I belive Prayer and time are on my side and I would like to live another 5 years ” comfortably” ( 70 now)
Saying gooodby to my Bladder and Prostrate is difficult
Hope to hear from others who are going thru this Black hole of decision making
cpax
Pax:
I expect Jack (our president) will move your post to its own dialogue, but welcome to our site.If the tumour is only in the lamina propria it is T1 but I am not clear whether when you say there is some muscularis propria present whether you mean in the biopsy or the cancer is in the MP. You certainly want muscle involved in the biopsy so they can rule out muscle involvement I assume this is what you mean). If the cancer is in the MP, however, then it is stage T2 and bladder removal is the gold standard.
It sounds like you have a copy of the pathology report (if not, I suggest you get one for your own records). It should also state the grade – high or low (sometimes 1,2 or 3 with 3 being high grade). The higher the grade, the more aggressive the disease and the more likely to recur.
I was where it sounds like you are about two years ago. I had T1 and had six TURBTs due to recurrence plus many, many immuno and chemo treatments intravesically (into the bladder). I did not want to lose my bladder in spite of the high grade disease. However, my cancer did progress to T2b and my bladder, prostate, etc was removed in December 2010 with the reconstruction of a neobladder. Big surgery, big adjustments, long recovery, well worth it now in my own case!
It is often a good idea to get a second opinion at a major cancer centre so that you can be sure the best treatment is being recommended. Jack may be able to help with a recommendation should you be interested and if it is appropriate for you.
Keep us posted.
GregGood day to everyone.
My husband has completed 6 rounds of BCG. He came through them with very minimal side affects. He was tired and the last 2 treatments had some burning. So now scope in 2 months and see how the treatments helped if at all. He has never had a clear scope so we are thinking it would be nice to get one of those for a change. On February 12th we welcomed our first granchild. Ava was born weighing 8 pounds. Now it needs to be said she is the most beautiful child we have ever seen.Heartiest congratulations – on your new granddaughter and also for your husband completing his current BCG treatments. May each one enjoy great health going forward.
Greg
Hello to everyone. I hope all is well. Stephen had his 6 Bcg treatments. His scope after ended up with 5 more tumours. This past Friday he had those removed and was given a chemo treatment right after. He now has his appointment with the surgeon next week for the pathology results. I am guessing he will be having another round of treatments. We are trying to stay positive but I know for him it has been discouraging with not yet having a clean scope since all this began. I will keep you posted on his journey.
Louise:
Sorry that the tumours have recurred again. It is not uncommon, of course, though that does not make the journey any easier. But lots of us understand having gone the same journey. Mine came back six times. Unfortunately for me, mine also then progressed to muscle invasive disease necessitating the removal of bladder, prostate and lymph nodes and having a neobladder constructed. Others do have multiple recurrences without it progressing so do not despair. Sometimes if the tumours continue to recur and are high grade, the uro will discuss options like a radical cystectomy. Be aware that the discussion may occur at some point, though the path forward is a cooperative one between uro and patient taking into account the pathology, patient preference, uro recommendations, etc. The good news is that even with a radical cystectomy and urinary diversion (of which there are four, but three frequently used ones), life can be wonderful and cancer free.But that may never be a conversation that is even necessary. These TURBTs are designed to prevent the progression and the treatments designed to reduce or eliminate the recurrence. Keep on fighting. It’s well worth it!
Greg
Hello everyone
It certainly has been awhile for me. I hope everyone is well. Stephen is doing well. He has finally received a clear scope since this has all began. This is a first for him so he was excited by the news. His surgeon however rained on our parade and did caution not to get too excited. We will take it for now. The BCG did not seem to be overly successful for him so he was given another form of chemo which was injected right after surgery. This is also the first time there have been no cancer cells showing in his urine tests as well. So for now great news and we will await his next 3 month appointment. His doctor is also keeping an eye on him as he has had tumours in the urethra on his last 2 removals. But we are happy with his course of treatment and very happy with the surgeon. Louise
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