Husband diagnosed with bladder cancer: I feel so alone

Posted by ljean63 @ljean63, Mar 28, 2022

Hi,
My husband had a tumor removed from his bladder. Biopsy results were conveyed to us as non life threatening bladder cancer. He had bloodwork and Ua prior to treatment and Ua showed cancer cells in urine. The doctor thinks the cancer is in his ureter. My husband still thinks it's non life threatening, but I looked up what was in his notes and it stated high grade T1 disease. I looked it up and now I'm freaking out and I feel so alone because I tell him everything that upsets me, but I can't share this. I also think his urologist isn't telling us anything .

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

If cancer is in play, I would always want to see an oncologist. Cancer is their area of specialty.

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@ljean63

I would like your opinion. My husband’s current urologist did his cystoscopy yesterday. He was much more communicative than prior times. We have my husband switching to a uro oncologist in the same practice. Now we’re second guessing. Everyone seems to think a uro oncologist is better. Do you have any thoughts? Thanks!

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Dear friend, my husband was diagnosed with bladder cancer in August 2021. I found a lot of useful info through “ Bladder Cancer Advocacy Network “. If you’d like, just google it, there are brochures about bladder cancer in terms of grade and stages, types of cancer, and brochure for caregivers. Let me know if you have trouble finding the site, I can send you the information. You and your husband are in my thoughts and prayers.

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@ljean63

Yes, I’m wondering how he will feel. I read that usually first two you feel fine afterwards, but with subsequent treatments there can be discomfort.
Also, he did have a rough night as he’s experiencing incontinence. I called doctor last night and he said it’s normal due to stent and bladder spasms.

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My husband had minimal side effects from BCG treatment. A small amount of urgency for a day afterward is all, for all the time he was on it. No cancer in the ureter is great news. You can ask for antispasmotics if the bladder spasms continue. Those are so uncomfortable. Good luck in the continued treatments. I hope BCG works well for him. Hugs to you both.

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@ljean63

I would like your opinion. My husband’s current urologist did his cystoscopy yesterday. He was much more communicative than prior times. We have my husband switching to a uro oncologist in the same practice. Now we’re second guessing. Everyone seems to think a uro oncologist is better. Do you have any thoughts? Thanks!

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@ljean63, I might suggest meeting the uro-oncologist and then making your decision. When do you meet the new specialist?

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@colleenyoung

Thank you, Jim. I’m sure @ljean63 will appreciate connecting with you and @sandielegal.

Jean, I understand how the diagnosis of high grade and T1 can be confusing. High grade means that the cells tend to grow more aggressively than low grade. But they also respond well to treatments, which is good. T1 means that the cancer was detected early and before the cancer spread.

You’re doing a great job of asking questions. Keep asking them until you understand what you’re dealing with. I would focus on prognosis statistics. These are numbers that may or may not pertain to your husband’s situation.

What help have the cancer nurses offered about dealing with the incontinence? They can be very helpful.

Will your husband have treatments beyond surgery?

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He starts bcg on May 13th. We switched to a uro oncologist as many suggested. Thank god we did as new doc found enlarged lymph node in his back that initial doc missed . He will be going in for a scan. It can’t be removed by needle as it’s close to two major blood vessels, so it will be robotically through abdomen. He’s getting tired of it, there’s always one more thing popping up.
His incontinence is all gone for now .
Thanks everyone for the comments, I’ve been bad at responding.❤️

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@ljean63

He starts bcg on May 13th. We switched to a uro oncologist as many suggested. Thank god we did as new doc found enlarged lymph node in his back that initial doc missed . He will be going in for a scan. It can’t be removed by needle as it’s close to two major blood vessels, so it will be robotically through abdomen. He’s getting tired of it, there’s always one more thing popping up.
His incontinence is all gone for now .
Thanks everyone for the comments, I’ve been bad at responding.❤️

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@ljean63, you've got a lot going on. It's understandable that you're not always here responding to posts.

I can imagine your husband is getting tired of it all as new things keep popping up. It must be tough for you too, to keep his spirits up and to put your feelings as second.

Please know that we're here any time you have questions or just want to vent or sit and have a virtual cup of tea together (so to speak).

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@colleenyoung

@ljean63, you've got a lot going on. It's understandable that you're not always here responding to posts.

I can imagine your husband is getting tired of it all as new things keep popping up. It must be tough for you too, to keep his spirits up and to put your feelings as second.

Please know that we're here any time you have questions or just want to vent or sit and have a virtual cup of tea together (so to speak).

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Thank you so much , that means a lot. It is hard trying to stay positive in front of him. It's worse as soon as he leaves for work, and I'm super slow right now, so my whole day is just stretched out in front of me. I feel positive that this is a bump , albeit a big one, in the road that we will get through.

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@ljean63

He starts bcg on May 13th. We switched to a uro oncologist as many suggested. Thank god we did as new doc found enlarged lymph node in his back that initial doc missed . He will be going in for a scan. It can’t be removed by needle as it’s close to two major blood vessels, so it will be robotically through abdomen. He’s getting tired of it, there’s always one more thing popping up.
His incontinence is all gone for now .
Thanks everyone for the comments, I’ve been bad at responding.❤️

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@ljean . I have both bladder and urethral cancer, and LGMDr23, all rather advanced. I bleed a lot and live in a world of semi-solid catheters and pain. My wife knows I must deal daily with deliveries of meds and equipment, and walk when I can. But she tries to ignore the whole thing because she has chosen to do a lot of the work. Clean up bloody beds, do all the driving, wash a lot of clothes. Ignoring it is a mistake because I do all I can to take the pressure off her. But there are some trade-offs for both of us.. She cooks only one meal per day. I am in bed about 5 hours per night, but 2 hours per day I am in my big chair. But I try to keep her informed about my issues, and partly because I, too, need the company and support. I do all my own diabetic and cardiac testing with the latest modern equipment, and she really is not are of most of what I do to help myself. I wish she know, but I do not wish her to do more, just listen when I need to talk. I am the one who Is always too tired . oldkarl

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I was diagnosed with bladder cancer, prostate cancer and leukaemia all within the same month just over 5 years ago. The fact that anyone has a cancer diagnosis is enough in itself as there is a lot to learn about our respective cancers so your concerns are understandable but now that you know the diagnosis it is important to maintain a positive outlook and I suggest learning as much as possible about the cancer from sites such as this but be careful of information on the internet and if unsure check it out.
The suggested treatment of BCG is reported to have around a 70% success rate, some people handle it better than others so it would be worthwhile getting feedback from within the group about their experience with BCG. In my case I ended up having 4 lots of 6 intravesical infusions and whilst I had no issues with the treatment and handled it well unfortunately I am among the 30%, my Urologist believes it is my compromised immune system because in layman terms the way BCG works is to seek out the diseased area which then becomes inflamed and irritated which sends a message to the immune system to call the troups to order and attack the invader. Many patients find that this provides them with a total cure and I pray that your husband adds to this list. All the best later this month and be there for your husband to provide him with support through this difficult period also remember to look after the carer as your good health is extremely important.

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@plugger

I was diagnosed with bladder cancer, prostate cancer and leukaemia all within the same month just over 5 years ago. The fact that anyone has a cancer diagnosis is enough in itself as there is a lot to learn about our respective cancers so your concerns are understandable but now that you know the diagnosis it is important to maintain a positive outlook and I suggest learning as much as possible about the cancer from sites such as this but be careful of information on the internet and if unsure check it out.
The suggested treatment of BCG is reported to have around a 70% success rate, some people handle it better than others so it would be worthwhile getting feedback from within the group about their experience with BCG. In my case I ended up having 4 lots of 6 intravesical infusions and whilst I had no issues with the treatment and handled it well unfortunately I am among the 30%, my Urologist believes it is my compromised immune system because in layman terms the way BCG works is to seek out the diseased area which then becomes inflamed and irritated which sends a message to the immune system to call the troups to order and attack the invader. Many patients find that this provides them with a total cure and I pray that your husband adds to this list. All the best later this month and be there for your husband to provide him with support through this difficult period also remember to look after the carer as your good health is extremely important.

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@plugger Thank you for sharing your health story with everyone! How are you doing these days? What other tips would you like to share with those of us on a cancer journey?
Ginger

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