Forum

× Welcome click the New Topic button to post

Not diagnosed, just worried

3 years 5 months ago - 3 years 4 months ago #50095 by LauraJose
Hello All,

Here is the update on what I know and what I don't know.

First, the CT scan showed I had a large kidney stone in my left kidney. It is 2.3 by 1.8 cm.

Second, my cystoscopy revealed a couple of places in my bladder where the Doctor wants to take a biopsy. She did not take a biopsy today.

Also, apparently my urethra is unusually shaped and tight. The doctor had quite a bit of difficulty getting the scope in. Not painful, just comical. I had three people down there trying to get the scope in. We all cheered when success was achieved. (You have to have a sense of humor about life.)

So, a couple of doctors are going to discus what the best way is to address the kidney stone, but my doctor seemed to think it will most likely be surgery through my back to get it out. We set an appointment for that procedure for Jan 20. The alternative would be to try to break it up and bring the pieces out my urethra, but it seemed like that may involve several general anesthesia treatments, one to insert a sleeve in my ureter, then wait 10 days for that to expand in size, a second anesthesia to go in and break up the stone and remove some of the pieces, wait a few more days, a third anesthesia to go back and check that all the pieces were removed and remove the sleeve. Three general anesthesia's in a month has it's own risks. So going in through the back just once may be the better choice.

On Jan 20, when I go under general anesthesia they will take the bladder biopsy samples before they start working on the kidney stone issue.

On Jan 11 I will have an office visit with the surgeon and an appointment with the anesthesiologist.

So, another month of wait and try not to worry. I am going to try to just put it all out of my mind until after New Year's. I'll see how successful that effort is. :)

Enjoy the holidays.

Laura

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

3 years 5 months ago #50076 by Alan
Sara Anne, I hate the new regulations also. Washington has this part botched. The super computers are all supposed to interlinked so each can see what each doctor is doing. Only one of mine has any shared info. Pretty sad.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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

3 years 5 months ago #50074 by sara.anne
I HATE "My Chart." All the docs are using it...think it is because they have to get everything done electronically to comply with new regulations. For example, yesterday I had a long visit and discussion about three possible surgical options with a cornea specialist. They say that a summary of my visit will appear on "My Chart." I get home and there is an email saying that the summary is there. I open it (after trying forever to remember the password and user name) and it says that I had an appointment at 11:15 a.m. and that my next appointment is.....
Worthless.

I get an email from my internist's office saying that I have "an important message on My Chart." I go through all the rigormarole to open it...It says
"please call the office to make your annual appointment." DUH. I called and told them that if they have a message like that for me JUST PUT IT IN THE EMAIL.

IF it actually summarized the content of my visit or had important information, it might be useful.

Sorry....just venting. I suspect that your doctor prefers to discuss these things with you personally.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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

3 years 5 months ago #50070 by Alan
Radiologist, pathologist and regular docs are all busy hence perhaps the reason thing aren't posted. Easy for me to say at this point in my journey, however I did learn "one day at time" is a key. As i used to joke the "turnip truck may get me 1st". No reason to speculate.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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

3 years 5 months ago #50068 by LauraJose
Hello to all. Hope you are doing well.

I don't have any news. Still waiting for my 2nd appointment that will include my first cystoscopy. Waiting is still pretty stressful for me.

I had my CT scan last Thursday, and I am sure the Dr. has the report on it by now, but I don't know what it says. At Shands University Hospital, they have a program called "My Chart" where you can access your medical records and lab tests. At my first consultation with the Doctor, she advised that she would put my tests results there, with some quick comments, but that we would discuss them in more detail when I came in for my next appointment. So now that she has not posted the CT scan results, my mind jumps to the conclusion that the CT scan has bad news, that she doesn't want me to see without her having the chance to explain or place it in context.

So now, I am wondering if the CT scan showed cancer in my kidney(s) or in the tubing that connects my kidney to my bladder, then having a radical cystectomy may be the least of my worries. So I talk to myself and say, "no need to worry about things that may never need to be addressed". It is a constant battle just to keep a lid on my totally unfocused (and at this time unwarranted) worries of what might be.

Three more days until I get at least a few answers.

No need to respond. Just venting a bit. I'll post after my Dr. appointment on Thursday.

Laura

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

3 years 5 months ago #50037 by LauraJose
Thanks Alan.

It seemed like a reasonable protocol. I suppose you could do them in either order, so either was fine with me. I feel like I will have some answers in the near future.

I am trying to not let my imagination (fears) run wild. You can speculate all sorts of things that may never happen. So I just focus on the fact that I am doing all that I can right now, and only time will tell what lies ahead.

It is easier to deal with one real problem than to worry about a thousand hypothetical problems.

Have a great weekend. I am going to put up my Christmas tree (artificial) tomorrow. It is windy and chilly down here in Florida, so being indoors trimming the tree will be a nice activity. May bake some cookies too.

Laura

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

  • 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 527 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 3 Latest User: Spencer
Yesterday Total Opened: 5 Yesterday Total Answered: 13
Total Posts: 51981 Total Subjects: 6721 Total Users: 8180
Powered by Kunena Forum