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Newly Diagnosed
Hi Good Morning I am 42 man living in New Jersey. I was diagnosed with Bladder cancer on Dec 7 2022 and under went my first TURBT. after the surgery it was discovered I have high garde stage one bc with multifocal tumors one was large the other medium in size and carcinoma instu. my Urologist told me that they usually proceed with Bladder removal because of my age the fact it is hg and they I also have carcinoma Insitu. I was devastated. he told me to setup an appointment with an oncologist he knows and trusts to get his input. he told me that for now I should be able to keep my bladder which was the first bright light since all this started. on Feb 14 I did my second TURBT which I feel I am having a tougher time healing from then the first alot more burning during this TURBT he did tell my sister who was in the waiting room that my bladder seemed angry the post op report said there may be some kind of infection . he does have me on antibiotics and meds for the burning. I try to do research online but it always gets so overwhelming. I hope I can find people on here who can help me navigate this scary overwhelming landscape and get me to the other side stronger and better.
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8 Replies
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Thanks Joe for your reply I am appreciate you assuring me that removing the bladder isn’t as serious of a surgery when you are young and that a neo bladder would allow me to go more or less back to my life before this nightmare started. I am choosing to stay positive that chemo will help me and I will have full response to the chemo. I have accepted that this is with me for the rest of my life and even if I remove my bladder I still run the risk the cancer can return some place else. I don’t know there is so much info out there and so much of it conflicts with the info you read before. I am just taking it one day at a time and making decisions as they come. anyone who has been diagnosed with bladder cancer has been dealt a bad set of cards. We just need to support one another and hopefully we can come out the other end tougher and hopefully “cancer free” for many many years.
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I have not faced situation like yours. I understand that It is one of toughest choices you have to make. But, if you can know what your life style would be like after cystectomy, it may lessen some uncertainty. The surgery of cystectomy itself does not seem high risk provided it is done at by a surgeon who has done many urinarily diversion of your choice and the hospital has done many cystectomies.
You will likely choose neobladder urinary diversion unless urologist finds it anatomically and physiologically neobladder is not suitable. With neobladder, nothing has changed from outside. Pee come out as it did before. The difference is that a new bladder is made with a sections of small and large intestine. Because there are no muscle to shrink to squeeze out urine and no nerve connection to brain tell it is time to void, you need to learn /teach when to void. I have heard that people with neobladder feel fullness in the abdomen and/or just goes to washroom every 3-4 hours. Most people seem to gain full continence during the day time. At night, some will train to have continence by using an alarm clock. Some choose a condom catheter which is connected to a collection bag, so he can sleep through.
I think one of key questions especially for a young patient is preservation of erectile function and ability to conceive child. Radical cystectomy usually removes multiple pelvic lymph nodes and also prostate. When there are nerves attached on both side of prostate. So, the prostate needs to be removed without damaging those nerves. Still, I hear that radical cystectomy affects erectile dysfunction in about 50% of cases. I do not know in detail, but if cystectomy is done at early stage, prostate can be preserved and erectile fuction can be in tact even after surgery. This is something you can find out from your urologist.This may sound counterintuitive but I understand that many urologist recommend early cystectomy if high risk non muscle invasive BCa because you are young because your life style will be most likely similar prior to the surgery. Also, you do not have to go through lengthy bladder preservation treatment with which still have possibility of progression. Statistically, early cystectomy gives much longer disease specific survival compared to cystectomy after bladder preservation treatment is done. The video with the link below explores this subject.
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yes I sure will. I do have a Nuclear boe scan scheduled on Wednesday and I am meeting with the oncologist Dr Morganstein Thursday afternoon. I will let everyone know how the meeting with him goes and what the results of the nuclear bone scan are.
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Keep us abreast of your journey! The good news is you are attacking this!
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.
Thank you I don’t think your being blunt. perhaps I am wrong or foolish but I am holding on to the fact that I will be able to hold on to my bladder being only 42 and in good health and fairly active. hopefully the oncologist will be able to help me . Dr Morganstein ( the oncologist) originally staged me with stage 1 ucc and carcinoma Insitu. he originally felt I did not need chemo and bcg would be effective. I have access to my medical file and the results of all the tests and surgical procedure they have been done via MyChart but I guess I will see what he thinks this time. I do appreciate you taking the time to respond to me.
If you have any doubt, sometimes a second opinion helps. If he missed some muscle with the first try maybe that is the move you want. At the same time, it is a delicate cut and that is why a second TURB is usually done. That means fresh eyes to peek and often it just confirms what was seen with your first URO. The pathologist only works and reads with whatever the sample is. It is on the surgeon to take muscle with the specimen. I don’t mean to be blunt. If any tumors have invaded the muscle, a cystectomy is the best option of beating this. You might want a copy of your medical file in case it needs to be reviewed. It is your property.
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.
Good Morning thank you for the reply. I met with my urologist this past Wednesday and he is recommending to an oncologist he works with he told me that he did remove muscle tissue during my second turbt but the results state no muscle present. so either the pathologist messed up or he didn’t get muscle tissue. two of the tumors did not invade connective tissue but the 3rd one invaded the connective tissue. I also have carcinoma Insitu which I have been told complicates things. he is recommending 4 courses of Chemo and see how that goes.he is trying to preserve my bladder and I am very thankful for that this has been a very difficult thing to go through. I am trying to take it one day at a time. I hope through this forum I can find comfort and support through this difficult and scary time
Fonso,
I apologize as it appears your post has not been noticed by many of us.
The key question in your diagnosis would be whether the tumor has invaded the muscle layer of your bladder. If that is the case yes, bladder removal is the normal standard of care. The second key is you had a second TURB which is also standard on high grade tumors. This is to confirm the margins include muscle to properly stage this. If you are only stage 1 (non muscle) and not 2 (muscle invaded), then saving the bladder with agents like BCG are usually a good option.
Ask further as you go.
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.Sign In to reply.
