Husband diagnosed with bladder cancer: I feel so alone

Hello, @ljean63 It makes sense that you are very frightened. I was diagnosed with uterine (endometrial) cancer in 2019 and it was shock and very scary. I couldn't talk and I could barely think for at least a day or two. Once my doctor and I discussed the plan I began to feel better.

I have a few questions for you.

Did you or your husband receive a copy of the pathology report? That report will include the method used to look at your husband's specimen and the diagnosis.

Your husband has a different take-away from the discussion with his doctor than you did. Were you present at his meeting with his urologist or are you going on what your husband told you? It's really hard to figure anything out when we don't hear something from the source.

Would you like to encourage your husband to get another opinion? If so, your husband can ask his urologist for a referral to oncology. Are you near a major academic medical center? That's usually the best place to find a doctor who specializes in what your husband was diagnosed with.

I can understand why you wouldn't want to share your fears with your husband. Assuming you've been married for many years he probably has figured out that his diagnosis in resulting in big worries for you.

If you'd like your husband to be seen at Mayo Clinic, here is the link to request an appointment:
http://mayocl.in/1mtmR63

Thank you so much. The doctor never said it was high grade T1, I looked it up and didn't like what I saw. Of course, I didn't tell my husband. I asked our primary, who is our neighbor, about how it was considered non life threatening. He now says to pray treatment works and 5 year survival is 70/30. I think the urologist just focuses on next steps instead of prognosis. I have a call into him , my husband signed that I could speak to him. We are just outside of Philly, and I have the info to get an appointment for second opinion at University of Penn. I'm not sure how it would work trying to go to Mayo Clinic . It's far away.

And so rude of me, I'm sorry about your diagnosis and hope you are doing well.

@ljean63 And I should have written that while I've personally experienced cancer as have members of my family I don't have any personal experience with bladder cancer. I did want to offer my support and provide some questions to help you to think this shock through. That I've had lots of experience with.

It's a relief that you can speak directly to your husband's urologist. Also, with University of Pennsylvania so close you will have some good options available to you. Yes, Mayo Clinic is far from you. I just wanted to offer that as an option.

The five year survival rate is what I was told about my cancer in 2019. Also, it's good to keep in mind that there are many different kinds of cancer and not just one disease. That five year survival rate, too, is based on past scientific evidence and it's encouraging to know that there is so much research going on into different types of cancer that there is far more hope than we realize at the time.

Will you please come back here and let me know what you find out?

No worries there. This is how I got involved with Mayo Clinic Connect. We share our experiences with one another in the hope we can support one another. I am doing well. Thank you so much for your kind wishes.

@ljean63 You are probably right about the docs not telling you everything. That is almost always true. But on the other hand, you have some opportunities to make things better. 1. Get familiar with NorthShore.com, a source for pads and wipes for folks with urinary tract problems; leakage, etc. 2. Make every day count with something good for both you and your husband. 3. Build a life pattern that can and will go on if and when he passes. Got to church, write a book, go back to school, etc. Go to various webinar sites such as Mayo, etc, and learn all you can so you will have some idea what is happening. Neither you nor your doc knows everything, so get busy learning. DO NOT TRY TO IGNORE THE CANCER! You have a chance to become much closer to each other in this experience, so do not waste the opportunity. You can do very little to change his cancer, but you can support his emotional and other needs. Last, get a second opinion, including a Full Genome sequencing or other tool to be more certain of the dX. I have about a list from Sequencing.com of about 5,000 hits on my variant (more or less accurate) list for one rare disease, so I will never know everything, but I will not be ignorant of what I face. Nor will my wife. oldkarl

I will tell you what my doctors told me “Do Not look On the Internet”! My Bladder cancer T2 was Small Cell (Very rare) Survival length very low….. Seven years later I am cancer free. Amazing things are happening in medicine everyday!
I am always available if you need to chat…..

Why would you think we would ignore the cancer?

The new doctor’s nurse navigator was the only one who was honest about his diagnosis. It is a cancer that has to be followed closely . The first doctor told us nothing .
Being told it’s non life threatening and then seeing it’s high grade T1 is a little confusing. I didn’t realize that some patients lose their bladder. That’s a big deal. Also, no one told us that incontinence would be a thing . It’s not constant , but my husband is a contractor and had two incidents in the last couple of weeks. I feel like we have been told nothing.
Thanks so much for the positive words.❤️

I’m so sorry . I did see that there is more success with bcg when genetic testing is done first in order to tailor the treatment to the patient. It’s on my list of questions for new doctor.