My mom is facing a radical cystectomy

[Sandy]

Hi there. My mom is going to be having this surgery in the near future. I am very worried about her since she is in her 80’s and therefore is not a candidate for chemo and radiation. I am a nurse and – unfortunately for me – this knowledge just increases my anxiety since I know what can happen and know too much 🙁 Do any of you know patients who have gone through this at this age and how they did post op?? I have 100% confidence in Dr Shayegan’s surgical ability to perform the operation but am very worried about post op issues.

[marysue]

I don’t know of anyone that old going through the surgery but I suggest asking about a very comprehensive post care plan for your mom. She will most likely need a lot of in home care for awhile to make sure that she understands what to do for herself. At any rate it will be a long recovery. What type of reconstruction is she having? That may play a part in the risk factors too. Those questions the uro would be best to answer. If you know the type of reconstruction surgery please let us know because we have many members here that have had each type and can advise on what to watch out for. Post op infection is the main concern from what I’ve read on this site from the members. ((((BIG HUGS)))) I know that this is really scary for you both. Keep us posted.

[Zina]

Hi Sandy, welcome to our site, although I am sorry for your reason for joining. I think you are correct to be concerned about post-op issues. Dr. Shayegan performed my RC last year, and I have an Indiana pouch diversion. He did an amazing job but the recovery was quite difficult because it is such a major operation. Because of my age (I was 41) and the fact that I was in very good shape prior to my RC, I have returned completely to my previous activities. Unfortunately, I don’t personally know of anyone your mother’s age who has had the surgery. I completely agree with MarySue when she advised you to have a comprehensive post-op care plan for your mom. Keep us posted.

[Greg]

Hi Sandy. Sorry your mom is facing such surgery. Dr Shayegan is renowned on this site as a wonderful surgeon, however, so if the surgery is necessary, he’s the guy in the OR you want to be in with! Post op is hard, there are no two ways around that. But home care is set up from the hospital (at least it was in my case). Good thing to speak with someone at the hospital about, however.

The thing about anxiety is that it is going to be there whether or not she has the surgery since if she does not have it, the outcome is not what is desired. So she either has to live with the cancer for as long as she is able or she has to have the surgery which brings its own worries. The proverbial “caught between a rock and a hard place.”

So your mother has:
One of the best surgeons.
One of the best major cancer centres.
Comprehensive home care available at no cost.
A loving daughter (at least) for support and care who also happens to be a nurse (big plus).
Those four things you need not worry about.

The unknowns are:
How she will tolerate the surgery.
What complications may arise (infection is common as is constipation and significant weight loss, etc.).
How will she react to feeling so weak and lethargic for weeks afterwards even with no complications.
Unfortunately, there are no ways to know until the surgery happens. Then the only thing to do is take it a day at a time and be thankful everyday for each other.

We are hear to listen, to offer support, to encourage, to even make you smile on occasion. And we will also pray for her and you. Often that’s the only answer to anxiety.

Greg

[Sandy]

Thank you everyone! It is very scary and medical knowledge is not always a good thing – not for anxiety levels. She will be getting an ileal conduit. Does everyone lose a significant amount of weight? I have only worked in ICU and recovery so have only seen patients immediately post op.
Greg you are right. We are caught between a rock and a hard place for sure 🙁 I just hope I am making the right decision for her. I am losing a lot of sleep over this decision.

[Greg]

Sandy, others can also comment on the weight loss, but in my case I lost 30 pounds (from 190 to 160). I also was 55 when I had the surgery. The issue is that from the day before surgery to about four or five days afterwards, she will not likely be eating anything solid – only clear fluids to start with, then to creamed type fluids and finally when her bowels are active to solid food. Of course she’ll be on IV as long as she is in hospital for nutrition. Her appetite however may be pretty low for sometime to come. And her energy level may well be at an all time low as well, from the surgery and the lack of food and the weight loss. Sort of a what comes first, the chicken or the egg – but she won’t be eating either! I am only going on my own experience and the stories I have heard from others who have had this surgery. And when she starts eating, whenever that is, she’ll want to take it slowly. Those chalk-like drinks to provide nutrition may be an alternative once she is home, perhaps mixed with some fruit so they are palatable (sorry, my own bias is showing). One of the nice things about the ileal conduit surgery is that it can be somewhat shorter in duration than other surgeries for other diversions. Still, it is called “radical” for a reason.
Having now scared you even more, know this. There really is not a whole lot of choice or Dr Shayegan would have suggested it, I’m sure. The gold standard for muscle invasive bladder cancer is a radical cystectomy. Only a very few in a small group even qualify to do chemo and radiation as a substitute. A radiation oncologist who spoke recently at a meeting in Winnipeg admitted that while the results may be similar for that small group, he could not recommend it as a viable alternative for the vast majority. It was in reality available mainly for those who could not survive the surgery or who had co-morbidities that would preclude having the surgery due to their own risk (bad heart, etc.). Not sure your mom’s situation, but probably the RC is the only option if action is to be taken and that’s why Dr S has presented it.
You mentioned you are making the decision for her. Is she comfortable with the decision? None of my business, of course, but she has a road of recovery that can be difficult.
All the best,
Greg

[Sandy]

Thank you Greg, your information is very helpful. Yes she is comfortable with me making the decision – it was her choice to give me that responsibility 🙁 She trusts my judgement completely and I trust Dr Shayegan and I know in my heart it is her only real option to hopefully give her some quality of life. I just have seen the worst case scenarios over time and of course that is what is always in the back of my mind. Her appetite is already poor but we make sure she is eating. I already have her drinking Resource 2.0 to help boost her nutritional status preop.

[Greg]

Sandy, if you click on the You Tube icon on the left side of this page you can watch a presentation given by Dr Shayegan at a patient’s meeting back in May in Hamilton. Good information there. Also, since you are a nurse, more technical info given by Dr Pinthus at the same meeting.

[marysue]

You defintiely are caught “between a rock and a hard place”. We were like that with my mom’s last heart surgery. She was going to die without it and the chances of her surviving the surgery wasn’t high. In the end we opted for the surgery but she didn’t make it. Even if my mom had made it it was a very long a difficult recovery ahead meaning at least 2-3 months in hospital with more recovery at home. She was only 74 when she went but and sorry to say this she told me the day before the surgery she wanted “to leave this world” so I knew that she had had enough and was ready to leave us. In her case her quality of life would have been very poor as it was presurgery so her passing as hard as it was turned out to be a real blessing. HOwever that being said if your mom is at peace about the surgery and is trusting you with the decision then you have a lot to gain by going for it. If she is getting the conduit then it should be a shorter surgery than the neobladder. Others can correct me here if I’m wrong as I haven’t been down this road. I suggest you discuss with the doc about her possible quality of life post surgery. If she doesn’t have any other serious health issues to hinder her recovery then I’d say this is definitely worth considering. Yes, your medical knowledge may give you some considerable stress but as Greg mentioned it is also a blessing as you know more than others what to watch out for. Even though I only had to do TURBTS and BCG I wish that I’d known in the beginning what I know now. Best wishes and keep us posted.

[KIOWA]

I know people who have gone through major surgeries at that age but not for removal of the bladder. I think it should first be determined what options there are for treatment first and then make a decision as to whether the surgery is needed. this is one case where I definitely would want another opinion. The radical cystecomy is a lengthy operation and a lot depends on the general health of your Mom and any medical conditions she may have. But you know all that already. I think it is a matter of weighing the risk of the surgery over risks of using other approaches. But for sure a person in good health with a good surgical team can do this surgery successfully. I would want to speak with the anesthesiologist who would be present and I am sure she will be fully evaluated prior to surgery so that the team is fully prepared for anything that may arise, as would be the case with anyone. I wish you and your Mom well.

Kiowa

[Sandy]

My mom’s surgery is booked for October 4th – 1 day before my husband’s 50th birthday and 2 days before my daughter’s 19th 🙁 She has her preop visit this wednesday and I am getting more stressed and scared and questioning whether I have made the right decision. I literally cannot sleep or eat 🙁 Please keep her in your thoughts.

[Jack Moon]

Sandy as long as you believe in your heart that you are making the the right recommendation you need to take the pressure off yourself. Your mom will have one of the best RC surgeons in Canada performing the procedure, surrounded by a top team, at a top cancer hospital. I do not believe Dr. Shayegan would perform the surgery unless he felt it would be best for your mom. He is a very caring person.
She will be in my thoughts and prayers,
Jack

[Author]

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