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spartyman71
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Do any of you have anythign in writing for an aftercare protocol for high grade bladder cancer after a rqadical cystectomy? I can't find anything online.

Thanks,

Tom

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Cancer Surgery Hernia Bladder cancer

22 replies

Karego

Spartyman, The dialong you've already had with the members has given you what is generally known for follow up. NancyNursez reply on the 27th for instance, in your 'What I haven't told you' post.
I am five years out and I now have yearly CT scans. But, Every 6 months, I have an appt. and give urine sample. At first, following my surgery, I did 3 month check ups, then went to 6 months after first year. Then yearly after 2 years. Cytology sent in every time and always a urine analysis for any infection I might not be aware of.
I would suggest you contact BCAN.org our sponsor home sight and ask for their list of follow up care. Also, Cancer Care may be a good place to go for this info too.
There is a good report in BCAN's Spring/Summer Newsletter on all types of RC surgery and the possible complications and follow up.
I'm sure many Uro's have differing schedules for follow up. But all, I'm sure, do have a routine follow up. I would imagine it depended on the patient and the diagnosis at the time of surgery combined with the resultant pathology.
We've have many discussions over the last two years on this topic of treatment before and after surgery. We are learning that there is so much for the medical community to learn about this cancer and we must help them find a unified protocol to follow.
Hope this helps.
Karego

Karego

I forgot to guide you to Roadrunners post (What was your follow up following RC?) That has lots of info there too from our membership.

spartyman71

I had 6 month appts. for the first 2 years with uro. Only thing I had was Bone Scan at 3 months after R/C. Never a urine sample, chest X-Ray, nada. Just a 5 minute appt. Looked at stoma, how ya feeling, goodbye.

Tom

tigger2009

I had my RC Jan. 29, 2008. Went for blood tests, scans in May '08 including a scan locally (with dye) to make sure there were no blockages on the way to the stoma. With the all clear I was turned over to my local doctor with instructions to get checked annually . Have since had one checkup in May '09. There may be some info' that would interest you provided in a booklet at www.vcn.bc.ca/ostomyvr/. I keep it on my desktop for reference.

BCAN_Claire

Reposted. Originally posted 8/27:

Spartyman,

When I was at the Bladder Cancer Think Tank, the doctors there were going to poll each other to see what they did for follow-up after RC, because there is no one standard and they were pretty sure they all did it a little differently.

Dr. Stephen Campbell talked about follow-up at the end of his presentation at BCAN's Patient Forum in Cleveland in May. You can listen to Dr. Campbell's remarks and see his slide show by clicking the link below, scrolling down to Dr. Campbell's presentations & clicking on the slide + audio or slides only:

http://www.bcan.org/cleveland-patient-forum/

Dr. Campbell breaks down HIS recommendations (remember, there are no national standards) for follow-up after RC by stage starting at about 17 minutes and 52 seconds into the video (or slides 33 & 34 in the slide set).

For Stage 1, he mentions blood tests, cytology, and chest x-ray annually as well as IVP (looking for upper tract disease) annually for the first 2 years & then IVP every other year after that.

I would recommend listening to the whole presentation to get the whole context of what he is saying.

Hope that helps!

Claire
Bladder Cancer Advocacy Network

roadrunner

Tom,
We were never given anything in writing,,,,just a this is how it goes,,,from now on from appt. to appt....
I think the tests are so important as the kidneys ureters are all involved therefore the extensive testing...actually now that I said that Gene had a kidney function test as well at 6 months,,,to be sure they were clear....sorry I can't be of more help.ginger

spartyman71

My GP just called and I am set up for all liver tests at 8:15 Friday morning. Pretty much an all day affair. Can hardly wait. Oh what fun I will have.

Tom

georgiaE

Hi Tom,

I don't know how old you are, but my husband Ed is 66 and on medicare. While he was still in the hospital after his RC, a social worker came in to talk to us and to set up home care after the hospital. They asked us how long we wanted someone to come into our home and I remembered Ginger suggesting 6 weeks, so we asked for that and they started 3 times a week and also ordered all of the supplies we needed, etc. We didn't have to pay anything. Medicare picked up the whole tab. I don't know about your insurance carrier if you are not 65 and getting medicare. I think everyone should have a nurse come into the home and check everything, teach you how to take care of yourself. I change Ed's bag every time and don't mind a bit. I learned from these nurses. You have to make sure you are getting a nurse that is qualified with your problems. The first 2 were horrible but the third was the charm and we requested her every time. It is so hard at first , when you get home, and not knowing what and how to do things correctly. The social workers do this for the community and it is great that they do this. We have not had to pay for any supplies either. Everything is covered. Ed does have a supplimental insurance with blue cross blue shield that covers whatever medicare does not cover. Hope I helped.

Candon

georgiaE

Tom,

I misunderstood your question. Ed is due to have his first of many cat scans next week and it will be 3 months after his rc. After his rc his surgeon and urologist saw him at 2 months to do an ultrasound to check on his kidney's. Ed has a great oncologist who is doing the cat scan and will repeat it every 3 months for at least a year. He will keep in touch with Ed's urologist and keep him updated. If all goes well, he will get cat scans every 6 months and if he makes it to 3 years without any reacurrances, then 1 year.

spartyman71

I just turned a very young 60.

nancynursez637

Well, the best defence against recurrence is an offence of follow up on a regular schedule. I understand it differs from uro to uro, but at least you should be evaluated on a regular basis. It would depend on how great the risk of recurrence or spread is but I would not want to go as long as 6 months without a comprehensive check up. (urine for cytology, scans xrays etc what ever is indicated in your case). So do have this discussion with your new uro, ask tough questions and set out the course that you want ie: earliest dectection of any new cancer

Nancy

mendo_lady

Tom

I think Nancy just said it best.
I wanted to ad, good luck on Friday, and prayers to you and Sherry.

nancynursez637

Tom, I have searched high and low for specifics and have not found a thing, I have posed the question to the Urological society and to a Urologist at Sloan Kettering, so will let you know if I come up wiht anything

Nancy

nancynursez637

Tom here is what Ginger posted about their Post RC follow up

o you just had your r/c,,,,now for the follow-up....

The Cleveland Clinic...our follow up

one week after surgery,,,appt.. with the
surgeon...................snip the little 2 drains from
the stoma,,,and a generally looking over

3 months......blood work, cat scan of pelvis , and chest,,,,urine test,,,and lastly a drawing from the surgery site by cathing for psa,,,visit the surgeon for
test results of the day........
6 months,same tests
12 months same
18 months same
24 months same,,,,and hadeous for one year if you have the okay.....

One other not so pleasant issue was he always did a rectal,,,,,so what else is new,,,more invasion of privacy....oh well!!!!!
Also list your hospital,,,,if you would please....

Ginger

spartyman71

I had my radical in Sparrow Hospital, Lansing, Mi. Was treated like a king!

spartyman71

Thank you all. I'm good to go now. I have compiled everything I need, called University of Michigan and have all of my liver tests Friday. Also have an appt. already with surgeon today to check out the hernia issue. We have two excellent surgreons in Lansing so I chose the one that took care of me with my two bowel obstrucitons early on ib my recovery.

Not only is she very skilled she is a real hottie!!!!! BONUS TIME!

xxxxOOO

Tom

momofive

LOL Tom thanks for the smile!!

spartyman71

Give Mark a little break and let him look at the nurses but make sure he is coherent enough to know that he may never, never, touch. Just look. I'm 60 and Sherry still lets me look but my legs would in cast if I did anything else. She is just like a dirll sergeant! lol

Tom

jj803

Hi Tom,

I think about the only consistency I found in RC follow up is whatever tests they go with most are on a 6 month schedule for 5 years.

JJ

nancynursez637

OK Tom, I found protocols that MD Anderson follows to insure best opportunities for cancer survivorship

http://www.mdanderson.org/patient-and-cancer-information/cancer-information /cancer-topics/survivorship/followup-care/index.html

hope this is helpful

Nancy

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