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Husband diagnosed with BC T1 High Grade, transitional cell, non-invasive
Hello my new friends! I can’t believe I’m here but I am. This has been a roller coaster ride of emotions since the diagnosis of bladder cancer. My husband was diagnosed with prostate cancer at 51 (3/2015) and it was very aggressive 4 out of 12 biopsy with Gleason score of 7, but his Dr caught it early. We decided to do the radical prostatectomy (still happy with that choice) psa for the last three years has been 0! The BC started off with trips to urologist over “kidney stones” (3/2018) that just wouldn’t get blasted and go away. Blood in the urine after the blast for a couple of weeks. Had another ct scan and large stone still there but Dr. wanted to check bladder to be on safe side and sure enough there were 6 raised tumors and one flat tumor looking grayish. (Yep I was in room and saw on tv). That was Mon pm and he was in surgery by Thur am. all tumors were removed and sent to pathology. came back bladder cancer T1 High Grade but had not gone into the muscle of bladder. So 3/16/18 had 2nd surgery to stage cancer and see if eligible for BCG treatments. Yesterday Dr. said he is eligible for 1st round of 6 weeks every Monday. My husband and I are both alike in the fact that we are “fix it” kind of people but we process differently. I want to know all the facts and he wants to ignore facts and not talk about it. I wanted to ask the Dr is this T1 HG non-invasive transitional cell carcinoma cancer terminal or progressive but didn’t. Dr. has already told us this is not going to be like the prostate cancer. This one will require the rest of his life seeing the Dr. I know no one really has the answers but where can I get some good research information about possibilities on the path his BC can take? Does anyone have a good site that will give me stats on what we might be facing down the road? thanks for reading my post and if sharing that also! God bless!
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6 Replies
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Jack,
Thank you for sharing this information. I definitely go for details. I will definitely be looking at the sites. Just the two replies yesterday made me feel a world better. And now with your help in the right direction I’ll be more accurately informed to make good decisions together with my husband.
Take care and be blessed to know you helped!
Sincerely,
Michelle -
Notalone,
I have attached a list of websites that provide reliable information about bladder cancer treatment and the potential course(s) of the disease. The first two listed sites provide a good background; the balance discuss details in endless detail. I like detail. Always check with your care team about anything of interest that you find on the internet.
Best to you and your husband,
JackNMIBC CONSENSUS DOCUMENTS
Below is my selected list of widely accepted treatment possibilities and potential application for Non-Muscle Invasive Bladder Cancer (NMIBC) and invasive BC.. These articles are all from trusted sources and/or authors. There is MUCH unreliable and potentially harmful bladder cancer information on the internet; both the author and the publication or promoting organization MUST be vetted.
Article # 1 below is a National Institutes of Health, National Cancer Institute introduction to bladder cancer. Basic background and overview of options.
Articles # 2, 3 and 4 are large group consensus documents on bladder cancer. There is some author overlap between documents. While there is general agreement between documents, there ARE some [minor..] differences in opinion on various points.
Article # 5 is from a smaller, well recognized association. This paper questions a couple of the finer points of current treatment practices and/or standards.
All together, the 5 articles run for some 100 to 125 pages. All are well indexed, so you can pick and choose parts that are applicable to your situation. This material provides a comprehensive starting point for researching YOUR areas of interest.
Only you and your care team are familiar with YOUR situation. Always talk to your doctor or provider about medical information your find online that seems to apply to YOU.1) National Cancer Institute (NIH NCI) Bladder Cancer Overview
https://www.cancer.gov/types/bladder2) Consensus Document, 2015, Source nature Reviews/Urology
http://www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html3) Consensus Document, 2016, American Urological association
https://www.auanet.org/guidelines/non-muscle-invasive-bladder-cancer-(aua/suo-joint-guideline-2016)4) Consensus Document, 2016, Canadian Urological Association
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771569/5) Consensus Statement, 2017, Society for Immunotherapy of Cancer
https://jitc.biomedcentral.com/articles/10.1186/s40425-017-0271-0Jack R
April 2018
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
Cynthia, thank you so much for your reply. It gives me hope and makes me feel calmer. I know we are not promised anything but I feel like I can put things in a better perspective. We have a great urologist and have lots of confidence in him. Just hearing from two of you really has been helpful. I don’t feel as anxious now. I got my deep breath and second wind… even the radical bladder removal is not the end of the road. You had it 12 years ago and I’m sure they have made some improvements since then.
Congrats on your overcoming and starting the organization!
thanks again hugs to you all!
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Welcome to our community, even though I am sorry you need to be. Your husband is lucky to have you on his side, I know from my own experience how important that is.
T1 high grade bladder cancer is not a death sentence if treated correctly and in a timely manor. Having a doctor that handles a high volume of bladder cancer is very important. BCG is often very effective and is normally the tool of choice with high grade non invasive bladder cancer. I am sure you will have questions about side effects and the such and there are a lot of us here that have been there done that so don’t hesitate to ask. If BCG fails and you have another reacurrance there is always Radical Cystectomy that for most is curative. I had a Radical Cystectomy 12 years ago and live a full and happy life. It may never be needed in your husbands case and not what any of us have on our bucket list, but knowing it is there is important.
As for retireing early…. We asked ourself the same question and this was our answer. If we could afford too why not? In our case it meant I could start this organization and I could put my (over qualified) husband to work in the office. I think for us my diagnosis was a wake up call that even if I survived, life is uncertain. It is a personal question don’t do it because of the bladder cancer if you do it do it because it is right for you at this stage in your life.Hope this helps and keep us updated.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Sara Ann, you are a sweet heart! Thanks for replying. I guess with him having the aggressive prostate cancer and then he had 7 tumors the first surgery which was considered HG(fast growing) and only 2 months later with the second surgery had another tumor that was cancerous my alarms went off. I know it is important to stay positive but I don’t want to be so positive and miss out on other things. Like he could retire this June and me March of next year. We don’t retire because we think we we are still in our 50’s so there is more time. Should we retire now and enjoy a decent quality of life now while he can or just keep going as we are and then this BC T1 HG comes up and bites us in the butt. I’m not trying to be negative but I’m trying to figure out what are odds or risks of it progressing are so we can make the right decisions. I know no one can really tell us what this nasty stuff will do because it does differently with others but I just want some idea. I know my husband doesn’t want to talk about this kind of stuff so I’d rather not have that conversation unless there is a higher risk that it will progress and need the radical badder removal or progress to the muscle level and they don’t even consider the radical bladder removal… I know I’m rambling sorry. I can handle bad news but the unknown really drives me crazy. This is definitely putting my religion and faith to the test. Trusting in the Lord with all of my heart and leaning not on my own understanding. thanks again!
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Sorry that you need to be here, and do understand your anxiety. First, let me assure you that this diagnosis is NOT terminal. I received a somewhat similar diagnosis 10 years ago and am doing fine. Since it is high grade (this means that the cells have the potential to grow and spread) treatment is needed and BCG is the treatment of choice. Many patients such as your husband have BCG and never see this cancer again.
If you go to our home page there is a blue box ABOUT BLADDER CANCER. This leads to lots of links with explanations on all sorts of relevant topics.
Your husband is fortunate to have you by his side.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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