Husband newly diagnosed

14 years 1 week ago #31010 by mmc
Replied by mmc on topic Husband newly diagnosed
Shouldn't really be much reaction to the mmc unless it gets in the blood stream. Shouldn't have though.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

14 years 1 week ago #31009 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Thanks Mike, I think we'll make a phone call tomorrow. I mean, I want to know what we're dealing with so we can decide what course to take next.

Husband is feeling tired but antsy. He's not a sit around type of guy. He wasn't told he'd have the discomfort he has for this long until he called the doctor's office to ask why he was still uncomfortable. They make the whole procedure sound so innocuous.

I am wondering what, if any, side effects he'll have from the one mitomycin treatment. Will he have a lowered immune system? Or any of the other side effects listed for the drug? It's all awfully confusing.

Please Log in or Create an account to join the conversation.

14 years 1 week ago #31006 by mmc
Replied by mmc on topic Husband newly diagnosed
Try telling them to fax or email you a copy of it.
It's his pathology report and he should be able to have it.

Sometimes the doctors want to tell you what it is but then their staff sets up appointments to do it.

If you want to know ahead of time, they can have the doctor call with the results.

Mine used to set up appointments to review the information with me and then they would call me if it was good news and cancel the appointment.

I told my doctor that even if it's bad news, I want to know right away and not to wait for appointments. I told him he could even leave a voicemail with the results if I didn't answer the phone.

I did that knowing that is what I wanted. Not everyone is the same and some folks would rather be sitting across the desk from the doctor to get the results.

My most recent CT scan, I had the results before my doctor go them.

If your husband wants the info, then he can get it.

If your insurance has a problem with 2nd opinions (most don't) then change the approach to "seeing a specialist". Major bladder cancer centers are the "experts".

Best of luck.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

14 years 1 week ago #31005 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Thank you Pat, I can tell you that I am certainly frustrated that the pathology is back but we can't get the results until his appointment on the 1st. I may try registering with DPMG and see if that gets me anywhere.

Please Log in or Create an account to join the conversation.

14 years 1 week ago #30958 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Yes, it is DPMG. I read about every single doctor and they have some impressive educations including Johns Hopkins and Yale. I am going to call UC Davis and find out if they use the same group. If they do, then do we just ask that a different doctor in the same group look at the slides?

I still have to call our insurance company to find out if the second opinion is covered.

Please Log in or Create an account to join the conversation.

14 years 1 week ago #30950 by Patricia
Replied by Patricia on topic Husband newly diagnosed
Probably DPMG if its in the Sacramento area. I think you can access online the report if you register with them.
As for remembering....yep thats normal...why you need to bring a pad and pencil next time and write it down. There's a lot of new medical terminology with this so absolutely normal to forget.
Glad the procedure went smoothly especially getting that catheter out so quickly. I think they're doing that more now since new mandates are out there from the insurance companies saying they will not pay for any cath related infections....and really if there's no blood and he can pee no reason to leave it in.
Let us know what the pathology says and we'll help you along.
Pat

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne