Another load I much carry alone?

Posted by cyds @cyds, 1 day ago

This week, my husband asked if it's normal to have red urine. UM... YESSSS!

I'm lucky he doesn't resist my efforts to take care of him, but he did not think we needed to go to the doctor TODAY! He honestly thought it was just the strawberry lemonaid coming out. The doctor wasn't getting back to me soon enough so we went to urgent care that is part of our medical group, so everything is all together.

There was definitely blood in his urine - it wasn't juice. Normal is 0 - .2 (can't remember the unit of measure), his was >100. No indication of infection. The doctor read the results and ordered a CT scan and based on that result more invasive tests.

Back to the reason for my question. Even after being told that bladder cancer is a strong possibility, he is not phased. Absolutely no emotion or reaction. No fear or anxiety.

Does this mean I need to be afraid for two? Is this another load I will have to carry alone? All I can say he is sooooo lucky he has such a naggy wife. He would have just let it go because it's intermittent. No visible blood after that.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for gently @gently

It could be a simple UTI or benign prostate enlargement. If he worried you'd have even more to take care of. You have to do it all anyway. I hope it's a simple antibiotic cure.
More caffeine, we know exactly what you mean.
Bless you both.

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@gently I was hoping that was the case - but no sign of infection. He has low-grade prostate cancer for many years, with increasing PSA numbers every 6 months. Last one was higher than when he was diagnosed. I guess my fear is that has spread to the bladder, which is a more volatile type of cancer, according to my research.

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Profile picture for cyds @cyds

@kjc48 Karla - your words are so true. I should have been more prepared. He has never been the most empathetic person, and the reason I was starting down the road of leaving him when he was diagnosed. I'm used to doing the heavy lifting, but I am surprised by his reaction. To me it is so weird. Thank you for your kind words and support.

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@cyds It is weird. this whole disease baffling. He gets upset when the printer doesn't work. He knows enough to display emotion over that. But can't display emotion or "keep up" in conversations that require two heads instead of one.
It's amazing that all logic goes out of the window, to where he'll say things that don't even apply to what we're doing at that moment. Or deflects to something else he does remember. It's really baffling, and very hard to navigate through but we do it, we just adapt because we have no other choice, and because we love them, and would expect someone to help us if we needed them.
Best, Karla

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Profile picture for cyds @cyds

@gently I was hoping that was the case - but no sign of infection. He has low-grade prostate cancer for many years, with increasing PSA numbers every 6 months. Last one was higher than when he was diagnosed. I guess my fear is that has spread to the bladder, which is a more volatile type of cancer, according to my research.

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@cyds, hi. From what little I've read low grade cancer doesn't usually metastasize, it would be very unusual for prostate cancer to spread directly from the prostate to the bladder. If you haven't been on the prostate cancer forum @jeffmarc is an amazing resource. You might even ask him if he thinks it might be metastasis.
Sorry for the worry.

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Profile picture for cyds @cyds

@judimahoney OHHHHH! So beautiful! I miss gardening. We used to have a large, beautiful garden at the community garden behind my husbands work (very nice perk for their employees)

I have a retirement date - 12/31/27. One thing I am looking forward to is getting back into the garden. No time (or inclination, frankly) for the past few years.

Thank you for your kind words and support. The pic perked me up, too!

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@cyds
Well, I must sheepishly admit that I don't garden. 🙄
All the items in the photo are either growing wild on our property or my husband planted them (before he got dementia).
Anyway, I probably wouldn't have much time to garden. I did have time to forage!

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Profile picture for gently @gently

@cyds, hi. From what little I've read low grade cancer doesn't usually metastasize, it would be very unusual for prostate cancer to spread directly from the prostate to the bladder. If you haven't been on the prostate cancer forum @jeffmarc is an amazing resource. You might even ask him if he thinks it might be metastasis.
Sorry for the worry.

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@gently
Every level of prostate cancer, I’ve seen from 3+4 on capable of metastasizing if not treated or if it’s got aggressive issues that caused it to metastasize.

Not very likely to be metastasized on discovery if 3+4. A very low percentage get some metastasis at this level.

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Jeff, how likely is prostate to bladder or is that even relevant. Does that indicate that even with an aggressive cancer 3+3 is unlikely, or is that false logic. Would a person with low PSA but with aggressive issues be watching and waiting? Thank you for taking this question up.

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Jeff, how likely is prostate to bladder or is that even relevant. Does that indicate that even with an aggressive cancer 3+3 is unlikely, or is that false logic. Would a person with low PSA but with aggressive issues be watching and waiting? Thank you for taking this question up.

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@gently
Extremely unlikely. It goes to the bone first normally. Less than 3% of people with a low Gleason would have that happen to the bone, Much lower percent to the bladder.

Somebody that has a 3+3 isn’t likely to have aggressive issues. I never hear of that happening. It is always possible since they get so little of the prostate when they do a biopsy.

I know a guy who has large cribriform And is only a 3+4. He’s been holding off for about a year and a half about getting anything done. He’s had the decipher and ArteraAI Tests and both of them have come back with very low numbers showing he is unlikely to reoccur. He’s seen many doctors and they all agree he could wait.

So yes, somebody with aggressive issues can hold off. But they also Have to be tested pretty regularly to make sure things aren’t Getting worse. They should also have a test to make sure that they don’t have something that could reoccur soon.

It’s just too simple to say that with low PSA and aggressive issues you can wait, It depends on a lot more information.

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Profile picture for judimahoney @judimahoney

@cyds
That lack of empathy did hit me hard, and the hits keep coming.
One caregiver training I went to shared that we are thinking for two and acting for two, so we are tired. Our brains and bodies are tired of carrying this load. We are all getting older, which makes this burden even heavier when we all want more quiet time or time to ourselves.
Just a supportive reply; alas, no answers with helpful suggestions just sympathy and empathy.
(A harvest photo with some of our goodies)

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@judimahoney Thank God for a supportive reply this morning. There is a light at the end of this tunnel: The good people on Mayo Connect and their much-needed daily support.
Best, Karla

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