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Hello, my name is Kory; Arn is my husband. At age 62 he was diagnosed with superficial bladder cancer 1 year & 8 months ago. One symptom – blood in urine. Happened only once and he was not in pain. He’s been through 3 surgeries to remove 1 tiny tumour, then removal of 2 more. The cancer came back. He was put on 6 weeks of BCG. On April 1, 2016 he was told the cancer is back again with more tumours. His urologist wants to schedule surgery to remove the bladder.
I have been researching bladder cancer on the internet for him. Arn says he does not want to wear a bag 24/7 for the rest of his life. That seems to be his biggest objection.
I told him he may be able to have an “orthotopic neobladder” where a bag is not used, and he can learn to urinate almost normally. This is all new to us. So much information to digest. It will be 2 years in July that he has been having ongoing treatments! Now, Arn says he doesn’t want to have ANY surgery or other medical treatments, and maybe just take his chances that the cancer will be slow growing. Of course, this is upsetting to me and to him. What I would like to know is if anyone has had the orthotopic neobladder surgery, and how it has worked for them?
Sorry for such a long message …
Hello Kory
I am sorry to the both of you given Arn’s diagnosis and situation.
Welcome to BCC – a good place for support and information.
It is very good that you are so supportive of your husband.It is easy to feel “low”, or “depressed” with BC even while dealing with treatment. It does tend to reoccur – which is even more emotionally taxing because it puts one on an emotional “roller-coaster”. But, as many of us on this forum have determined – Bladder Cancer is highly treatable and need not change the quality of life.
I am 59. When initially looked at, I had a large 4.5×3 cm Tumor. My Urologist was suspecting I had an invasive form of Bladder Cancer with Bladder Removal as a possibility. He said I was “young” and a NeoBladder would be a good option if it came to that. The Doctor changed the recommended treatment after two TURBTs and two Pathology reports indicated I initially had TaLG – a non invasive form of Non-Muscle Invasive Bladder Cancer (NMIBC).
Bladder removal or Cystectomy is usually done under certain conditions.
Here is what I think is a good video from Bladder Cancer Advocacy Network (BCAN from US) that helps explain NMIBC and when a Cystectomy would be considered.
Do you have copies of Arn’s Pathology report(s)?
It may be worthwhile asking for a second opinion.
Depending on the Pathology report(s) and a second Uro look, there may be many bladder sparing options. One option, for example could be TURBT again, then BCG re-induction with further BCG maintenance in accordance with the SWOG protocol. Alternatively, if Bladder removal is what Arn is facing, there are members on this forum who can help with advice and experience.
BC is highly treatable and need not impair the quality of life. I really do strongly advise your husband not to adopt a a “do nothing” attitude. Life is worth living.
We are here to help, just ask.
God Bless
DDep
Hi Kory:
Welcome to Bladder Cancer Canada, the site no one wishes they belonged to. I’m sorry to learn of the battle your hubby has had with BC (bladder cancer).
I think before he embarks on the road of removing the bladder, you both need to make sure of the pathology results and that the situation warrants it. Superficial bladder cancer has more than one interpretation. Some urologists class only Stage Ta or Stage 0 as superficial and others class Stage T1 or Stage 1 as superficial as well. With some Stage 1 patients docs feel that the progression to Stage 2 which involves invasion into the muscle layer is high and therefore start discussing the surgery to remove the bladder. Stage 1 means that the cancer has invaded slightly below the inner surface of the bladder into the layer called the lamina propria. Cancer that has started to progress like that is high grade and at more risk for going further. Some doctors will also start the bladder removal surgery discussion if there have been several reoccurrences of any type. To determine where your hubby’s cancer situation is at that will as mentioned require a further conversation with the urologist.
You are also entitled to a second opinion if you feel that is warranted. If you need help with obtaining doctor names you can call the Bladder Cancer Canada toll free number and leave a message or private email Jack Moon on this site. He is the former past President and cofounder of Bladder Cancer Canada and has the necessary info to connect you with other doctors should you choose that option.
If it does become necessary to decide on the bladder removal surgery there are plenty of survivors on this site that have done the different options and you and your husband can be connected with one or more to discuss the why and wherefores of the surgery. We also have patient booklets under the information link on the home page that can be downloaded for free that give a layman’s description of dealing with bladder cancer. Hard copies of these booklets can be obtained by contacting Bladder Cancer Canada. They are free also.
This is a big surgery with some challenges so any decisions regarding it can’t be made lightly. If the decision has to be made and he is going forward with the surgery the biggest decision will be about which diversion to get if he is allowed that choice. The surgeon can tell you that for sure and answer questions about the risks and benefits of each.
I’ve not had to go down that road but have people here in my Calgary support group that have – mainly the outside pouch option and the majority have recovered and are doing well. I had one gentleman who felt like your husband and didn’t think he could cope with the idea of the outside pouch – it was the only option in his case but he not only conquered chemo prior to the surgery but is now in his third month post surgery and came through well after some struggles. What kept him going was the fact he still has a minor aged child and wanted to see him grow up. Getting through depression with cancer is hard and makes sound decision making more difficult. I suggest talking to the docs about a referral to a cancer psycho-social department if his depression is persisting.
I got deeply depressed while doing BCG (21 treatments in all) on top of heavy side effects and nearly quit treatment several times thinking that I couldn’t take it anymore. That was when I discovered Bladder Cancer Canada and talking with others helped me see that the battle was worth waging and to this day I’m glad I powered through. Had I given up and not pursued treatments I don’t know if I’d be here to talk about it. I should have gone to a professional for counselling. Had I done so I think I would have saved myself some trouble.
If he chooses not to do anything, the cancer will most certainly spread and even low grade may become life threatening and then it might be too late to do anything about it. Even if it doesn’t progress further into the bladder wall it can travel up the ureters, causing blockage and urine backing up and potentially affecting the kidneys as well. Not a good scenario.
Bladder cancer is doable and treatable. Others have attested to it as have I but it takes courage and determination to get there. Let us know if we can be of further help. Take care and stay in touch and let us know how it goes. (((((HUGS)))))
Hello DDEP, thank you for replying & for your encouragement. I watched the video on YouTube that you recommended. Your message and the video helped a lot! We have the latest pathology report (Nov. 2015) that show “Multiple fragments of Grade 2/3 noninvasive papillary urothelial carcinoma”, and “High grade carcinoma in situ, flat type present”. There is no invasion.
Arn has a urologist who did the cystoscopies. After the 3rd reoccurence the urologist then recommended an oncologist, who supervised the BSG treatments. On April 26, we will see the oncologist to discuss what was found and what treatments would be best. The urologist is recommending the bladder be removed.
Arn trusts both doctors. He handles things quietly and doesn’t say much. I try to guess what he will be able to hear, and leave out things that would upset him more. I do ask him if he wants to discuss the bladder cancer.
There is also a pressing problem that is overshadowing all of this. Arn has a really bad back and is in constant pain. Excruciating pain at times. He had back surgery 9 years ago for a herniated disk. The surgery worked for awhile but the old pain came back. He has tried everything available to manage this back pain & is on constant morphine medication plus others. He still goes to work but comes home exhausted. Doesn’t sleep well. Has to sit up to sleep. The doctors don’t know what else to try. Doing back surgery is out due to arthritis build-up. So, now he has cancer. With more pain added if surgery is done to remove the bladder. I don’t know what he is going to fight this cancer with. Maximum doses of pain killers that will leave him like a zombie? What quality of life is that? So you can see why he just wants to give up. I don’t know what to tell him anymore … I’ve watched him suffer for years with the back pain; I don’t know how he does it.
Thank you for listening … Kory
Hello Mary Sue and GerryW. Gerry, thank you for the private message; it was very helpfull. I know I need someone to listen to me that can give me honest feedback. Not just friends who say “think positive”. Gad. As you can see from above, Arn also has a back condition that keeps him in constant pain.
Thank you for listening, and if anyone can add more, please do. … Kory
Hello Kory, welcome to the club no one wants to join. I can tell you though that you will find some listening ears, support, encouragement and some advice on this site that will help you and Arn on the journey you are now on. Just a quick note to answer your question about neo bladders. Feel free to message me for more questions. I was 52 when diagnosed with Stage 2 invasive bladder cancer. Did three rounds of chemo before having my bladder removed and receiving a neo bladder. That was more than 2.5 years ago. I am doing well and happy with my choice. There are pros and cons to each resolution. The surgery for neo bladders is more complicated and longer than for other resolutions, meaning the recovery time is generally longer. Then there is the learning curve of using your new bladder, which has its share of ups and downs and accidents. Once past that, one of the issues many face is a return to full continence – some achieve that, others face challenges in that area. Interrupted sleep patterns are a norm with a neo, but it seems Arn already has that. Now that I am this far past my surgery, recovery and life with a neo, I am pretty pleased with it. I have no problem with incontinence, but am in the minority in that I do need to self catheterize regularly. Once you get used to it, it is not a big issue, and can do it anywhere as needed. More to share but I will stop there, if you have ANY questions, please do not hesitate to ask. Happy to share my experience to help someone else.
GordHi Kory:
Sorry to learn of Arn’s back issues as well. That is no joke. He could also be experiencing “referred” pain from the bladder on top of what his usual issues are making the situation even more difficult. I have occasional back issues and sciatic pain in my left leg and had a constant dull ache in the lower back prior to discovering I had bladder cancer. That pain was gone once I healed from the TURBT (tumour removal surgery). I also experienced the pain again when I had a reoccurrence in 2010.
If there is no muscle invasion present I strongly suggest a second opinion consult given that Arn has these other issues and you are right, it is a quality of life decision.
I also would ask about doing more BCG versus bladder removal. 6 treatments is not often enough. I had 6 treatments as a follow up from my first surgery and was good for 22 months and then had another tumour. I had a second surgery followed by 15 BCGs ( a second set of 6 followed by 3 sets of 3) over the course of 18 months. I’m been cancer free ever since- that is going on 7 years now. I have asked myself if I’d had the extra treatments the first time around – would I have even had a reoccurrence? Of course there is no way to know for sure. People do have reoccurrences doing BCG. Sometimes it just takes a while for the immunity thing to take hold.
On the flip side of that, I’ve had some support group members tell me that they felt the bladder removal surgery was as much a psychological reassurance of fighting/beating the cancer as much as the physical. One lady told me that she actually only had superficial cancer but had had multiple reoccurrences close together and was advised to consider the surgery because her doctor felt she was eventually going to have to go down that road anyhow. She went with the outside pouch and hasn’t regretted it because she no longer has to go for cystoscopies, be catheterized for BCG etc. She just has a checkup once a year now. She lives a full active life. She is in her late 60’s.
These are just my thoughts as this is a big decision to make and must be made carefully with the confidence that he is making the best decision for himself. Take care and let us know how it goes. ((((HUGS))))
For Magnum (Ken). Hi Ken, I’ve been going back & reading the information I received in April re: Arn’s bladder. Guess what ! We saw Dr. Alan So on June 22 to discuss Arn’s case. I posted the results on the forums but you may not have seen it. It was so encouraging that you have had the neo-bladder for over 6 years. Arn’s bladder has to come out, and soon. He doesn’t want surgery but I think he will come around. He wants the neo-bladder. I will give your information to him. The other hurdle is the C word. Catheter. Arn hates the catheter more than anything. He was tethered to it for 4 days after the last TURBT. Will have to tell him about self-cathetering possibly being part of the recovery. And going home with 2 catheters and 2 bags. I found a good website that showed pictures of how it is done by the patient. I could learn to help him with the flushing as well. There is a blessing here. We are glad the prostate gland will be gone as well. Arn’s dad died of prostate cancer after a long struggle, at age 72. Arn was scared that is what they would find when he was first diagnosed. He doesn’t have prostate cancer. I will keep asking questions and posting – it has helped me a lot. Arn is an introvert so he says it’s better that I ask, and he doesn’t want to talk to anybody about it either … Well then. 🙂 . We are both 63 years old, and have known each other for 43 years! He’s always been the ‘quiet one’. We wish you continued success Ken, and Arn will feel very assured that Dr. So did your surgery. Thank you for posting!
Arn & Kory
Hi Ken, after I told Arn about your experience with Dr. Alan So, the surgery and the recovery, Arn has decided to have the surgery done. Catheters and all. I can’t thank you enough and others who have posted such helpful information. The journey begins …
Looks like 2 weeks of sunny golf weather coming to Abbotsford and Burnaby over the next 2 weeks. Enjoy !
Arn & Kory
Just one small thing. Dr. So will send you home with just one catheter. The super pubic comes out at the hospital.
Kory, so sorry to hear that your husband has to have his bladder removed.
He is so lucky to have such a loving and supportive wife. I know that together you both will get through this with the love and support of your family and friends.
I will be thinking and praying for Arn and you in the weeks ahead.
God Bless
MarieThank you SJay – going home with just 1 catheter is a plus for Arn !
Hi Marie, if he doesn’t have the surgery the cancer will spread. Has 3 months to decide what to do (the sooner the better). I’m already looking forward to his recovery! At least he will have a chance to live. He says he can handle the surgery and all the recovery craziness. One step at a time. In the past he has healed well after many surgeries on his knee (from playing soccer) and eventual knee replacement surgery. Had back surgery done and healed well after that too. Don’t know why the cancer keeps coming back. It was caught very early, 3 tiny spots. Expected an all clear but the tumors came back. And continued to come back. So this is where we are now. I try not to nag Arn but he can be so stubborn at times. Not always loving and supportive wife — ha ha. I just want him to be well. His family is really good, they do as much as they can. I’ve become really good at removing catheters! Something I never knew I would be doing. Arn is still working full time as a car parts counter man. He’s not in pain (just from his back) and has no symptoms. Thank you for your prayers and for caring!
take care,
Arn & Kory
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