Husband diagnosed with bladder cancer: I feel so alone

ljean63,
Since the new masses have been growing for months since microscopic stage, the wait is not that significant. That is what Urology at Mayo Rochester has told us. We waited anywhere from 3-6 weeks there from cystoscopy to biopsy/removal. Like you, when we know we have cancer in our bodies, we want it out now! I feel so strongly about that, but we were unable to move up my husband's appointments any sooner at Mayo. My experience at Mayo for head and neck cancer was totally different 6 and 8 years ago. Both times I had a new metastasis to my lung, I saw a thoracic surgeon the same day and he actually did surgery the following day! Whether it is post Covid changes, or just the current status of best in the country medical care but Urology at Mayo has never worked like that for us. We are waiting 7 weeks with a nephrostomy tube in place just to get an appointment with the reconstructive surgeon there. We have no idea how much longer we will wait for the actual surgery. There are only so many doctors, and so many hours in the day and I understand that, but it is so frustrating to wait, especially when there is cancer growing inside of you. You might try requesting a referral to a larger medical center and see if they can schedule something sooner. I think you cannot be too pushy when it is your health or your spouse's health. It doesn't hurt to ask......maybe a cancellation spot opens up? Good luck on this and know that you are doing the best that you can do.

How are you doing, LJean?

Thanks for asking! Got biopsy results the other day. It is cancer, which we knew, but it’s low grade, non invasive , which is an improvement over the original tumors which were high grade.

I missed my opportunity for a cystectomy. I wish you and your husband well. Cancer does what it wants to and any solutions come with to their own risks and complications so I am not rushing for a cystectomy while my PSA is not detectable. It is good that you have each other for support. Some of us didn't have that option.

I’m sorry you don’t have that support . It must be difficult.

No one should have to face their cancer battle alone. I am so sorry that you have not had that support. Keep your head up and stay strong. Well wishes for you.

During this journey that we call life many of us are thrown challenges that we must face, usually there is no option as the downside risk is too great. In your case the challenge is the diagnosis of your husband's bladder cancer. I assume the reference to "doctor" and "Urologist" are two different members of your medical team and they have given you conflicting information. It is always a little confusing when this happens, I had a similar set of circumstances just last week. I underwent a cystoscopy two weeks prior and met with my Urologist last Wednesday and he advised the all the cytology results indicated urothelial as well as carcinoma in-situ but that they were benign which was strange but the biopsies advised high grade carcinoma in-situ. I have been fighting bladder cancer for almost 6 years and the Urologist has previously recommended removal of the bladder but I really want to keep the bladder if at all possible. I understand that Carcinoma is always classed as high grade. I had an appointment with my haematologist/oncologist who also treats my leukaemia and prostate cancer. He advised that the cancer was on the bladder lining so the best option is another round of BCG, I had previously had 24 installations of BCG, 12 of Mitomycin and 12 Gemcitabine with maintenance, so I am not a stranger to this unpleasant treatment. Initially after the Gemcitabine treatment I had progressed 18 months cancer free then advanced a further 6 months before the last cystoscopy identified the current cancer outbreak. The decision of another round of treatment was relatively easy for me as it fits with my objective and although the pathology determined the cancer as high grade it hasn't penetrated beyond the internal lining so it is still relatively safe to kill this lot of cancer with treatment rather than bladder removal. In your case it appears that your husband's cancer may not be life threatening as it is classed as grade 1. Whether the location of the cancer is either bladder or ureter needs to be confirmed as the treatment would certainly be different so I suggest that you make a note of all the questions that are causing your stress and arrange an appointment with the Urologist. In the meantime it is important that you avoid any stress, stay positive and use your anxiety and energy in working with your husband in sorting out the correct diagnosis and the way forward. All the best.

@ljean63 My husband had Bladder/Ureter cancer diagnosed Nov 2020. Cancer was at junction of ureter and bladder so they weren't sure where it originated. They called it Ureter cancer. They went in and removed the bladder and ureter and found out it was also in one of the kidney's and the prostate. All this they didn't know until they got in there. He had a urostemy bag and had a few leaks the first few weeks but then it all settled down and was no issue. They removed 30 lymph nodes at the time of surgery and none of them came up with cancer which the oncologist surgeon was shocked at. They did chemo prior to surgery and continued w that and radiation after surgery. He seemed to be well, wasn't sick from treatments and looked good (although I look back at the times we thought he looked good and the pictures show me otherwise). By November 2021 they told him it was in his spine and a few of the lymph nodes, where they removed the kidney. He began getting a lot of hiccups and they suspected wind pipe involvement. He passed away April 2021. He was fine up until the week he passed when he couldn't stay awake and wanted nothing to do with food. I believe going in and doing surgery stirs cancer up and there are a lot of studies on this exact thing. If you leave it alone and treat it with drastic diet and lifestyle changes I think you'd see tumors shrink. Not to mention, chemo & radiation are killers... slow killers... so I am not sure what killed him was the cancer or the damage from the toxicity of chemo & radiation. It's a scary thing to have to go through. How is your husband doing?

Good morning everyone! I am just finding this group. I am at Mayo Florida with my father who was diagnosed with Micropapillary Bladder Cancer October 20, 2023 in Cumming GA when they thought the biopsy they were taking was going to show locally invasive prostate cancer… all that to say the biopsy wasn’t done as guidelines recommend for bladder cancer, nor has his cancer otherwise been properly staged. Today is a big day as we will be meeting with Dr Lyon, urologist, who is capable of major bladder removal surgeries assuming that is still what needs to be done. The only reason we are here instead of with the team in Georgia where my parents live, is that they couldn’t get to his surgery until December 11 anyways… or to an oncologist (Emory - Dr Bilen) that was remotely familiar with this rare cancer, until November 28. Blessings to all.

Knititout, my husband and I are so sorry your father has to go through this but also want to reassure you. Dr. Lyon at Mayo Jax is the best.
He removed Bob’s bladder and prostate as both were involved four years ago when Bob was 87 yrs. old. He was back to playing good golf within six months following surgery. The ostomy does require some life-style adjustments but they can be managed. We wish and your family the very best. I would be glad to answer any questions you might have.