Forum

× Welcome click the New Topic button to post

second opinion in Southern Oregon needed

8 years 9 months ago #34507 by sara.anne
May I try again to urge you to get to a center that has someone who specializes in bladder cancer? The only credential that Dr. Getty has, from what I could find on the internet, is that he IS board certified in urology. His specialty interests do NOT list bladder cancer!! The hospitals in that area are NOT centers with a lot of experience in bladder cancer, should your husband need in patient treatment....in fact, Dr. Getty listed only one hospital affiliation, and that at the coast. (The listing may have omitted RVMC and Three Rivers.)

PLEASE tell your husband that his life is at stake. Bladder cancer can be very treatable....IF treated correctly. Isn't it worth it to have the very best? Believe me, I have lived in the Rogue Valley, and there are some good doctors there in other specialties. Urological cancers other than prostate?
Not so much.

It is a 4-hour drive to Portland from Grants Pass. If you live north of there, it would be shorter. Many people have to fly for hours, at great expense, to places for second opinions from really qualified doctors.

End of lecture....sorry to seem to be over-reacting, but all of us in this group have your best at heart...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The topic has been locked.
8 years 9 months ago #34503 by clueless
The doc did get muscle - he mentioned it to me immediately after surgery when he met me before I got to see George again. I remember distictly, because at the time it scared me because I interpreted it to mean the tumor was in the muscle, which I knew to be bad news.

And when he had the pathology report yesterday, the doc said distinctly that he sent in a piece of muscle and that the tumor was not in the muscle. It is in the lining, if that makes sense.

I can pick up the pathology report tomorrow when we go in for the scan. I figure I can also pick up the scan and/or have it all sent to Hopkins when we go back into town on Monday to see the doc. (it's an hour's drive one way to Grants Pass, and longer to Medford btw).

The latest is that George can and does urinate without catheter now - but I found him sleeping on the floor at 4 am this morning, woke him up and asked questions, and he says he pees before it registers that he had to, and so he slept on the floor to keep the bed dry. It also burns like heck when he pees... I'll run and get some diapers once the stores open...our floors are heated and toasty and I put a couple comforters under him for softness and one on top. He says he's comfortable and has gone back to sleep snuggled with his dog.

He also says he is constipated for 3 days now and it is bothersome. I fed him prune juice... we'll see. I think I have to take away his chocolate - he is a chocoholic and I think chocolate constipates.

I certainly do feel clueless, but I don't plan to stay that way. I do tend to take problems by the horn...I will get educated and I will take action.

George and I have been married for 25 years and he counts on me to gather the proper info on most everything since I work online and have constant access to the internet. I am most certainly not going to let him down on this.

BTW, in case it means anything to anyone, the doc is George L. Getty Jr., MD, PC in Grants Pass.
The topic has been locked.
8 years 9 months ago #34502 by Patricia
a TURB is what your husband had done..a transurethral resection of the bladder(he actually had a TURBP which includes the prostate)...but since he did not get it all it is very dubious in my mind whether he got the requisite muscle that you must have for a correct pathology report. If it is understaged which it has been found that over 50% are when not done at a major cancer or university center that deals with lots of bladder cancer...and if it indeed could be muscle invasive than BCG the uro is proposing would have disasterous effects.
At the very least if you do not want to travel have the pathology slides sent to someplace like Johns Hopkins for review and second opinion. They're #1 in Urology and they will not make a mistake. You can send them and pathology will wrap them up for you or you can have the pathology dept. send them.
here is a link and they will help you..
http://pathology.jhu.edu/department/services/consults/urologic.cfm
This is something everyone should do. I found out after i got breast cancer last year that automatically the surgeon sent out the slides to the top pathologist in the country to confirm. We need to do the same with bladder cancer.
The skill of the surgeon is the single most solitary consideration when you have bladder cancer.
pat
The topic has been locked.
8 years 9 months ago #34501 by mmc
We understand. It is all overwhelming right now and you won't retain a lot of the information when something like this is going on. I used to bring my questions to the doc and then write the answers as he told me.

You do want to get the pathology report. That will have most of what you need to know.

Glad to hear that you are taking charge! That's great!

Sorry, I can't bring myself to call you Clueless (even if you do feel that way right now). You soon will not be and we'll do all we can to help you!

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...
The topic has been locked.
8 years 9 months ago #34500 by clueless
Oh, and what's a TURB?
The topic has been locked.
8 years 9 months ago #34499 by clueless
I don't know how he knew that no lymph nodes were affected - the doc says he scraped very aggressively and also scraped the urethra. Hubby was in the operating room for 3 1/2 hours. The pathology report was back today and that's when he said that no lymph nodes were affected..

He showed a picture of the cancer - it's not flat on top, it's kind of spikey...and I don't think it was red either.

The doc also said that he would want to try the tuberculosis thing, but if it didn't show very good results ( he emphasized very good, not just ok) he said a complete removal would be needed, but was worried about his age.

I wish I had retained more of what we were told but my mind was racing...

They removed the catheter today, and when we got home (its an hour drive, the doc is in Grants Pass) Hubby started complaining about not being able to urinate and soon after about feeling very sick so we went right back.

The doc gave him a catheter to put in and take out himself and that did make him feel better and we are now back home.

Wednesday we get a scan, and the following Monday (a week from today) back to the doc for the results.

I figure after that it's the time for a second opinion.

San Franciso or Portland - not driveable for us, but flights are not too long albeit expensive. We could fly in in the am and back in the eve I guess.

I am younger than him and I still work, but can set my own hours to a point and can go with him.

He isn't enthralled with the idea of flying someplace, but I will make it so, I am determined to do all this the very best way possible.
The topic has been locked.
  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 886 Guests 

Statistics

Today Total Opened: 1 Today Total Answered: 1 Latest User: Grandmato3
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52350 Total Subjects: 6785 Total Users: 8285
Powered by Kunena Forum