Bladder Cancer and other complicating health issues

Posted by dablues @dablues, Oct 7 7:45pm

My hubby was diagnosed with bladder cancer in 2010 and had BCG treatments a few times and the dr. at Mayo said that was the last BCG treatment he could have and if it didn’t work he would do something else. He went into remission and 2017 cancer cells showed up and he was on maintenance treatment. He had his treatments in Athens, GA but we went down to Mayo for his cystoscopy. This year he said he just couldn’t travel any more as he also has COPD and 2017 had to have an operation lung, then last January they thought he had the flu and stayed in hospital 15 days. I talked him into having antibody testing when it became available and he came back positive. Now he still has cancer cells, and he had a cystoscopy done in Athens, then a cat scan, and today he went to the dr. to see what the cat scan showed and it didn’t show that anything was wrong. The dr. told him to have his 3 maintenance BCG treatments which start in November then another cystoscopy, and of course they will send his urine to a lab to see if the cancer cells are still there. If they are they want to do an exploratory on his Kidneys and he doesn’t want that. I was reading a post where someone had to have a guided liver biopsy. Can’t a guided Kidney be done instead of an exploratory. He is not in good condition to have another operation as he’s on oxygen which doesn’t appear to help him, uses a chair I bought him to ride in when we go to large stores. By December he will be going on 83, so wonder if anyone can give advice whether a guided Kidney biopsy can be done. If I’m in the wrong area for this question please let me know. Thank you. I know he’s nervous so that’s why I want to research this.

@dablues. I cannot offer any help as I have very little knowledge but I can offer my support any time you need to write or vent

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@dablues, it seems like you and your husband are dealing with several different issues and health conditions. First there are his health conditions: bladder cancer and COPD. On top of that he seems to be fatigued both because of the medical issues, but perhaps also because he's fed up with it all. On top of that we have COVID all around us. It's hard work being sick. It's hard work being a caregiver. I can tell that you want to help him in everyway you can and you don't want him to give up.

I'm also tagging fellow members to join this discussion and offer their thoughts, like @predictable @jimmy2248 @judith4 @texascitylady and @nvmoen.

DaBlues, The best thing to do is take one step at a time. If I have understood correctly, he has agreed to continue 3 more BCG treatments starting in November. Monitoring his treatment and tests will determine the next steps. No need to make a decision about kidney biopsy or anything else at this time. Cross that bridge when you get to it.

You also said that your husband finds travel difficult, especially since he is on oxygen. Given that he is a high-risk patient for COVID, it is probably wiser to stay closer to home for care. Is the cancer specialist in GA working with your husband's care team at Mayo Clinic? Have you considered virtual or telephone consultation with Mayo?

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@dablues You are a gracious caregiver, and rightfully concerned. With the existing health challenges your husband has, traveling can be very stressful on him, and you also. I can certainly understand his reluctance to be put through so much as it was presented to him. Let's break in down into small sections, and perhaps it will be easier to handle, do you think?

With the three BCG maintenance treatments and a cytoscopy procedure, there will be questions answered. Rather than dwelling on a possible kidney exploration, get through the first part first. I have had two kidney biopsies. Let's talk about your choices after the clear cytoscopy, okay? It will do you both good to think positively, and lessen your stress. Please let me know how this idea sits with you?
Ginger

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This sits well with me, the only thing is the doctor brought up the exploratory. So I always try to look ahead to find alternatives if there is any. His Cat Scan came out good. His cystoscopy came out good but the urine that was tested shows cancer cells somewhere. He went through this for about 4 years then was cancer free. Will wait and see what happens. I just like to prepare for the future I guess. Does kidney biopsies require exploratory surgery? That is what the doctor recommended for him if the cells are still there after his maintenance treatment. Biopsies are different than exploratory surgery I would think. I doubt he could handle exploratory surgery. That is what concerns me.

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@bustrbrwn22

@dablues. I cannot offer any help as I have very little knowledge but I can offer my support any time you need to write or vent

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Thank you!

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@colleenyoung

@dablues, it seems like you and your husband are dealing with several different issues and health conditions. First there are his health conditions: bladder cancer and COPD. On top of that he seems to be fatigued both because of the medical issues, but perhaps also because he's fed up with it all. On top of that we have COVID all around us. It's hard work being sick. It's hard work being a caregiver. I can tell that you want to help him in everyway you can and you don't want him to give up.

I'm also tagging fellow members to join this discussion and offer their thoughts, like @predictable @jimmy2248 @judith4 @texascitylady and @nvmoen.

DaBlues, The best thing to do is take one step at a time. If I have understood correctly, he has agreed to continue 3 more BCG treatments starting in November. Monitoring his treatment and tests will determine the next steps. No need to make a decision about kidney biopsy or anything else at this time. Cross that bridge when you get to it.

You also said that your husband finds travel difficult, especially since he is on oxygen. Given that he is a high-risk patient for COVID, it is probably wiser to stay closer to home for care. Is the cancer specialist in GA working with your husband's care team at Mayo Clinic? Have you considered virtual or telephone consultation with Mayo?

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The doctor was the one who said exploratory surgery, not biopsy. I, am the one, that thinks it would be better if he had biopsy done instead of surgery if the doctor wants to go forward with that. I tend to jump the gun, but think less invasive testing is better than opening him up to do an exploratory on his kidneys. His condition with his lungs COPD is bad and getting worse so don't know how he would fare with that kind of treatment. The doctor at the Mayo Clinic that he has been seeing since 2010, recommended he have maintenance treatments in GA. That's how it has been done, but he would go to FL to get his cystoscopy. But this is the first time he said he can't do the traveling anymore, and he isn't seeing an oncologist in GA, he is seeing his urologist for the treatments.

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@colleenyoung

@dablues, it seems like you and your husband are dealing with several different issues and health conditions. First there are his health conditions: bladder cancer and COPD. On top of that he seems to be fatigued both because of the medical issues, but perhaps also because he's fed up with it all. On top of that we have COVID all around us. It's hard work being sick. It's hard work being a caregiver. I can tell that you want to help him in everyway you can and you don't want him to give up.

I'm also tagging fellow members to join this discussion and offer their thoughts, like @predictable @jimmy2248 @judith4 @texascitylady and @nvmoen.

DaBlues, The best thing to do is take one step at a time. If I have understood correctly, he has agreed to continue 3 more BCG treatments starting in November. Monitoring his treatment and tests will determine the next steps. No need to make a decision about kidney biopsy or anything else at this time. Cross that bridge when you get to it.

You also said that your husband finds travel difficult, especially since he is on oxygen. Given that he is a high-risk patient for COVID, it is probably wiser to stay closer to home for care. Is the cancer specialist in GA working with your husband's care team at Mayo Clinic? Have you considered virtual or telephone consultation with Mayo?

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Last January he got the flu, so they thought and spent 15 days in the hospital. They tried every kind of antibiotic on him and nothing was working. They called in a infectious diseases doctor. He finally came home. When the anti body testing came out I persuaded him to have it done. His test came back positive for the Corona Virus antibodies. My test came out negative. Doesn't make sense but that is what the results were. This is before the Corona Virus was told to us in February or March. They said he had the flu and I had the flu, that was at the hospital in GA. I didn't feel like I had the flu as I was going through bad reactions to the Shingrix Vaccine. So all this is confusing to me since he has antibodies, I don't, yet we live together. Doesn't make sense to me. Even his family doctor said it doesn't make sense.

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@dablues

This sits well with me, the only thing is the doctor brought up the exploratory. So I always try to look ahead to find alternatives if there is any. His Cat Scan came out good. His cystoscopy came out good but the urine that was tested shows cancer cells somewhere. He went through this for about 4 years then was cancer free. Will wait and see what happens. I just like to prepare for the future I guess. Does kidney biopsies require exploratory surgery? That is what the doctor recommended for him if the cells are still there after his maintenance treatment. Biopsies are different than exploratory surgery I would think. I doubt he could handle exploratory surgery. That is what concerns me.

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@dablues
Kidney biopsies are considered surgery but they seem more like a procedure to me. I've had many kidney biopsies and they've gone very smoothly. They use an instrument to take several very tiny threadlike samples which they view immediately under a microscope. When it is over you need to first lay on your back for a period of time, then sit quietly, then finally stand and walk. The kidney has a lot of veins and they worry about potential bleeding. It's not difficult and requires a very tiny wound which only needs a bandaid.
J

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The doctor didn't say anything about kidney biopsy he was talking about exploratory surgery and I don't think my husband with all that is going on with him at 82 should have that. I was thinking of the biopsies. Which I will talk to the dr. about. Also he was just diagnosed with mild case of macular degeneration yesterday. That runs in my family and I'm always concerned but never thought the doctor would tell him that. He doesn't have any family members that he know of that has that. That's the first thing he was asked. I'll wait and see how things go with the bcg maintenance treatments before talking to the dr. His lungs are really bad and I don't think he can stand another operation at this point in time.

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