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Hi there.
My dad was diagnosed with high-grade poorly differentiated urothelial carcinoma invading the mucosa, lamina propria, submucosa, muscularis propria, as well as invading the small lymphovascular spaces.
He is at orientation today. He is getting a radical cystectomy in 1 week. He has gone through chemo and his tumor(s) are still there. His doctor told him that there is only a 20% that the surgery will work. What does that mean? From what I understand, being opened up when the cancer is still there is not a good thing at all.
I am so confused and frustrated. It’s not that he doesn’t want to share things with me. I think it’s a combination of not wanting to worry me (how can he not, he has cancer!!) and he doesn’t know how to explain what the doctors are telling him.
If anyone can shed any kind of light on this for me it would be greatly appreciated. I am going out of my mind with worry… If I knew what to expect it would be easier. This not knowing/understanding anything is killing me!!!
Hi Worried and Confused:
Welcome to the site that no one wants to belong to. Your reaction and emotions are understandable and completely normal.
If I’m reading what you’ve said correctly, it sounds like your dad has been diagnosed with muscle invasive bladder cancer that has possibly invaded the lymph nodes. What they are most likely going to do in the surgery is remove his bladder, prostate and surrounding lymph nodes. They will also create a new urinary diversion. It is the goal standard of treatment in most cases of muscle invasive bladder cancer to remove the bladder and surrounding organs to give the best chance of survival.
I suggest a few things:
1) If you want any help with interpretation of your dad’s reports, call the BCC toll free Toronto number and leave a message asking to be connected with Jack Moon. He can assist you with this.
2) You can go on the link “Newly Diagnosed” and download the Patient Booklet on muscle invasive bladder cancer to get information on the surgery and the type of urinary diversions. That will be another decision to be made in consult with the surgeon about which diversion is best for your dad.
3) You and/or your dad can also be connected with someone that has had the surgery by again contacting the toll free number. Leave a message and they will return your call and find a way to match you up with someone that has or has had a similar diagnosis. You may find it helpful to talk to a person that has had the surgery and will be able to ask questions about the surgery and what to expect.
I hope that this helps. Once you get a more complete picture of what is going to happen it will help a little bit. It is the waiting and not knowing at the beginning that is the hardest part of the journey. All the best and please let us know how it is going. Take care. ((((HUGS))))
Hi Mary Sue
Thank you so much for the reply and thank you for the resources! I’ll definitely check them out.
Yes, the cancer has invaded the LN and he will be having his bladder, prostate and surrounding LN removed.
I asked my dad to meet for lunch today after his orientation and have yet to hear back 🙁 I imagine today was extremely tough on him. Hopefully though I get a chance to see/speak with him before his sx next week. Communication regarding his cancer has been very sparse between us which I understand but it doesn’t make it any easier for me… and can only imagine what he’s going through *sigh*
Do you know of any support type resources someone in my position might be able to access? I try and do google searches but get so overwhelmed with everything that comes up it’s hard to know where to start.
Again, thank you so much for the reply. I appreciate it 🙂
Hi Worried:
There is a bladder cancer support group in Edmonton. The contact information is under the link Facing Bladder Cancer – click on Patient support groups. I have the group here in Calgary but Edmonton has a better group than us with more meetings and people involved and is much closer to you.
The facilitator may have some suggestions for resources in your area and maybe have a person in her group that has had the surgery and can answer questions.
If you need something is terms of psycho-social support for either you and/or your dad I suggest contacting the nearest cancer centre which might be the Cross Cancer Institute in Edmonton.
Your dad is probably going through a whirlwind of emotions right now just like you and probably can’t find the words to discuss anything in a sane manner. I know when I was diagnosed it hit me like a brick wall. I had no idea where to start or what to do about my family – I had two underage kids at the time. He may or may not have taken in much at the orientation. It would depend on how it was presented. Hopefully he will bring home some information to share.
The only thing that you can really do is let him know that you are there for him and gently ask if he understands what is going on. You can be proactive by learning as much as you can about his situation, read, ask questions. If you are going to be his advocate and main caregiver, I suggest that you start a journal and use it to keep track of tests, results, appointments etc. and list any questions before each appointment. You will need to discuss whether he wants to have you or someone else present at appointments. It is helpful to do so, as a patient can become overwhelmed and shut down and not really hear what is said. As it is said- two heads are better than one. I hope that this helps.
If you think of anything else let us know. That’s why we are here. ((((HUGS))))
Hi Worried and Confused,
I echo all the suggestions Mary Sue made. I have muscle-invasive bladder cancer and had my bladder, prostrate, seminal vesicles and 12 lymph nodes removed. That he doesn’t want to talk to you about it is understandable. I found it difficult to talk to my 3 kids about it too. For me, the greatest help was talking to a support person from Bladder Cancer Canada who had the same surgery. The feeling of support I got was the greatest gift I could ever have imagined. I would be more than happy to talk to your father either before or after his surgery. He needs to feel that he’ll be okay. There are many of us living with bladder cancer and leading normal, happy lives.
Stephen
Hi all,
Update:
My dad had his sx yesterday and the surgeon said it “it was tough, but went well” the surgeon also said “There were no big surprises. The nodes were quite “matted” and that the next days do generally bring complications such as infections, heart attack, etc” but overall he is please with how things went.
Has anyone had complications after their radical cystectomy?
I’m going to see him today at lunch time (thankfully I work literally right across the street from the hospital he’s at). I’m so nervous… I know he’ll probably be sleeping and I really just want to see with my own 2 eyes that he’s OK.
His girlfriend was wonderful about keeping me updated through out the day yesterday, which is a HUGE relief because we’re not that close.
My dad’s never been much of talker and is definitely a “man’s man” avid hunter, outdoorsy, etc… to see him all layed up in a hospital bed… ugh. I hope I can keep it together. I’m worried that I won’t and well, I don’t want him to see me upset. Can anyone say what I might expect to see? My imagination is working on overdrive right now lol and not in a good way.
Thanks for listening everyone 🙂
Hi Worried and Confused,
I’m glad your Father has had his surgery and that everything has gone well. As far as complications, the only thing I had after my surgery was a couple of partial blockages of the bowel. They were painful but worked themselves out after a few hours. What you will see is a tired man with lots of tubes in his abdomen. Did he have a neobladder done?
Stephen
He has been diagnosed with stage IV cancer… do you know what the survival rate is after having a radical cystectomy?
It would be a urostomy bag. A colostomy bag would be for bowel waste.
After my radical cystectomy (RC) I found it very helpful to have my wife, sister & daughter help out in the hospital. They did a lot of things the nurses just don’t have time for. Helping to brush teeth, changing gowns or bed pads that have gotten wet, getting food that was more appetizing and reminding me about the ERAS tasks like the incentive spirometer or coughing to improve recovery after the surgery (they will have given him some printed info on ERAS).
I found that being in the hospital is a great way to reduce modesty and any embarrassment about talking about the situation. If your father isn’t overly communicative, this is a good opportunity for him to open up a bit more (with some gentle encouragement from you),
If he has stage IV, it means the cancer has spread to other organs. Presumably there will be some radiation or chemotherapy after recovery from the surgery to deal with that, Something to ask your oncologist about.
I hope you don’t spend much time on recovery rates. They are statistical and don’t apply directly to your father. They make you think of negative outcomes, I have found it most helpful to focus on things I like to do. No hand wringing or over the top sympathy. That doesn’t help.
Good luck to you both.
Hi SJay
Yes, you are completely right about being in the hospital helping to reduce modesty. He actually talked a little bit about it (which was surprising). He did say that there in only a 20% chance that surgery will work; what does that mean? Only a 20% chance the cancer won’t come back?
I’m guessing it is because the cancer is stage IV. The bulk of the cancer would have been removed with the bladder, but presumably there is still cancer in other organs. That needs to be dealt with. There should be a CT or other test that they have done which says where else they have found cancer. (All reports including CT, pathology and post-op reports are available to your father to see and BCC can help you interpret them, if necessary.) Possibly he means that of patients who have stage IV bladder cancer and an RC followed by other treatment have 20% five year survival rate. It is definitely a question to ask the oncologist. I’m not really qualified to answer.
Thank you for your answer anyways, SJay 🙂
When I see/talk to my dad again I will surely be asking him.
I will let his gf know about the BCC and hopefully this is a resource that they want to utilize. I myself have found it immensely helpful even with the little bit I’ve posted. All of are absolutely wonderful!!
Hi Worried,
I echo everything SJay said to you, especially about 5-year survival rates. It is a statistic only and I strongly advise you to NOT focus on it. I was diagnosed with Stage IV bladder cancer and was told a very low survival rate number… lower than your father’s. For many people, that number can be devastating and can take away the most valuable tool you have for survival… a positive attitude. I decided to ignore the number I was given and am glad I did. Instead I told myself and everyone who would listen that I am going to be one of those who survive. That immediately gave me a positive outlook on the situation. Everyone here at BCC can help your father with that.
Step two is to do everything possible to achieve that goal of BEATING that statistic. For me, that mean stop smoking, eat only healthy foods, get exercise (it was gardening for me), get plenty of sleep, and reduce stress in my life. I am at 3 years post-surgery and happier and healthier that I have been for decades.
Update:
Last Thursday (Dec 22nd) dad was told he would be getting discharged on Tuesday (Dec 27th) on Monday (Dec 26th) he had a CT scan and they found 6 lesions on his liver 🙁 He has since been told by his surgeon that he will not be getting out until after this weekend (no date actually set).
It is EXTREMELY disheartening to hear they found lesions on his liver… dad is not really willing to talk about it. He says that he will worry about one thing at a time, number 1 thing being getting out of the hospital, walking and sleeping in his own bed…
Has anyone else who’s had a RC had an outcome like this (lesions found elsewhere after the fact?)
Definitely taking one day at a time and trying my very best not to get worked up and just going for visits when I can and being there for him. Dad has an amazingly positive attitude (that he’s showing anyways) and that is a wonderful thing to see 🙂 Again, just taking everything one day at a time.. what else can a person do…
Hope everyone on this thread had a very Merry Christmas and a Happy New Year to you all!!! *hugs*
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