Checking In

Hello Ed,

Thank you for you and Cynthia's support . . . it is very much appreciated.

We spoke to Dr. Bergman, his Urologist, the one who suggested the BCG's and CT scans (that would mean 4 CT scans over the course of the next 3 months). We spoke with him this last Tuesday and I took him to task about his recommendations.

Apprently, because the CT scan he took last week showed no cancer because the cancerous tumors were removed 2 months ago. I have to confirm this again, but I think he said there was no sign of in situ either, which doesn't sound quite right.

Since my husband is now deamed cancer free, Dr. Bergman is now recommending that my husgand do the BCG's and CT scans and wait and see if the cancer returns. If it does, then we've agreed to go ahead with the surgery.

My husband doesn't see any reason to have the surgery if he's now in what looks like remission. However, Dr. Bergman said that the in situ will most certainly come back at some point.

So now it was my turn to ask questions and voice concerns and my husband was becoming more and more upset.

I told Dr. Bergman that although, from his observation, that my husband is a healthy, strong 68 year old man, I said "You don't live with him and you really don't have any idea what he goes through day to day and he agreed.

I also asked him that when the in situ returns, can he guarantee that it won't come back even more agressively and land outside his bladder wall and he said no he couldn't guarantee anything,

Dr. Bergman left the room and it was very clear that my husband and I and the doctor are at odds. When he came back, he suggested we meet with the surgery team and discuss it further, so we're going in tomorrow.

I will most certainly ask about second opinions and hospitals as well.

I know the fear and sheer terror of this cystectomy is driving him, but Cynthia's doctor is right. This is a poweder keg waiting to explode. I just hope tomorrow will yield a better decision.

Rayn

Hi Catherine, I really do appreciate your information, no matter how bleak it is . . . it's the truth and can be proven, that's all I care about. I'm horrified by it but not surprised.

I've always felt uncomfortable being at the VA, but the doctor he has matriculated from UCLA. He's a Urologist, but quite young (he could be my son for God's sake . . . he's still pink!) and he's not with my husband everyday and has no idea how this last surgery put him down. I will enlighten him this coming Tuesday.

Just because my husband checks out as an otherwise healthy 68 year old male doesn't mean anything. Cancer is Cancer. It has no socio/economic or otherwise healthy people boundaries.

My husband has been suffering from the last surgery for over a month and although each day he says he's feeling better, he's not. I can hear it in his voice and see how exhausted he is in his eyes. It took weeks for the swelling to go down and he's still bleeding intermittently through his penis and experiencing enough pain to warrant strong pain medication at least once or twice a day.

I'm infuriated with this doctor and I intend to take him to task on anything he says.

Rayn

Hi Pat, I asked my husband if he knew about this and he said he does, he'd just rather wait to see his Uro instead of getting the disk. We're seeing him next week.

You know, I think he's just plain exhausted and to a degree, depressed. He's normally on top of everything and doesn't procrastinate at all, but this is a different animal. I think this doctor did him the biggest disservice imaginable by giving him this shoddy information. It gave him an excuse to relax about it all and I just spent a week from hell prior trying, with final success, to convince him how critical this is.

We were ready to set the date and then this doctor just put on the breaks. Now I've gotta start all over again. I'm not sure I can take another argument like the one we had. I'm wondering if there's another approach I can take . . . like crying my eyes out, cause that's what I feel like doing.

Every time I bring it up now, he gets irritated, like I'm intruding and getting the way of something that's none of my business. He's more interested in planning parties and camping trips and excursions. Nothing like a little denial.

Anyway, thanks for all your help and encouragement.

Rayn

Rayn..where were the CT scans done? The VA or UCLA....don't know how the VA works but the CT scans are put on a disc and are immediately available and you can call to see when the pathologist has read the scans and go pick them up...just sign for them. They are yours. Even if you had some done at UCLA call first and tell them you would like to pick up the CT scan disc and pathology report. You will need all records for another opinion with you anyway.
I never waited for my Uro to give me results..i always picked them up and the case with Cleveland Clinic they handed you the disc and took it to your appt. with the Dr.while you were there and he read them..they, of course, went to radiology also but Dr. Gill (who was head of Urology at Cleveland at the time) knew how to read them...one bright guy and soooooooooooo nice. Always has a big smile on his face.
pat