Has anyone else been where we are?

Hi everyone - I am writing because I feel so blue and depressed.  We had 3 month follow up visit with doc yesterday.  Had many questions, but only got to talk to the PA.  My husband still has a UTI (since a couple weeks after cryo - 3/22).  Doc did a cystoscopy, and told husband it was from sloughing of dying cells.  He will be on macrobid for 3 months.  Also, PSA was 1.98.  PA said they were satisfied, but I am not.  Feel abandoned and alone.  My love having cancer is bad enough, but no support from medical staff is very bothersome.  thinking of going to an oncologist.  Any one have any thoughts about this? Sure would appreciate your input.

Georgeann

Hi Georgeann,

I am not sure what represents a good post operative PSA for cryo but I can empathize with you on the reaction of the medical staff. You may want to give things a little more time to develop as three months is not that long. I recently concluded a two year round of hormone therapy and the urologist said see you in a year. I have to admit I thought that was a bit of a long time since he had just given me news that my PSA was rising. Retest a month latere showed that not to be true. So, like yourself, I am looking for a medical oncologist who will help me to manage the disease. Oncologist are trained to treat cancer though most treat more than one type but it may be time for the switch. And, in your case, it does not do any harm to get a second opinion. Do some research and try to find a knowledgeable oncologist preferably with PCa as a focus in his/her practice.

You may want to discuss HT with doctor if the PSA starts to rise. It is a bit of a bother for the patient but one adjusts. I seem to recall that cryo can be repeated as well. Or am I in error with that?

I wish you and your husband well. You have found a site full of caring people who will offer advice and support.

Regards,

Don

Not sure what your situation is. Are you in or near a large city where you have multiple choices for medical help ? Is there a major cancer center nearby ?

I live two hours from Cleveland Clinic, where I went for my surgery. I might add that my Doctor, who is very well known and a very busy surgeon, has always seen me when I go back for follow-ups, and makes me feel like time is no issue.

But I also have a local uro, who is young and learning, but is very personal and attentive. He called me at home one evening to tell me my biopsy was bad.

My point is , that if you have multiple options in your locale, you should be able to find a doctor who treats you and your husband like you need to be treated. Don't be afraid to be insistent. Tell the PA that you expect to see the doctor as well. Tell the doctor that you expect to see him when you have an appointment. Talk plain with them. If they fail to give you a good feeling. look for another doctor. You are the one paying the bills.

Good luck on your recovery. Keep posting here and let us know how it is going.

Georgeann
I'm sorry you feel so let down by your current medical team, so I hope you will be able to find someone better.

It is very important to get the communication/information side of cancer right, and this is often very hard for the aptient as it is such an emotional business as well as a medical one.

I'm not sure I can offer much help as I have been looked after by the right kind of people. Also I live in Holland and can't offer much advice about howm to look for new docs in the USA.

My urosurgeon's main team consists of him, the surgeon, and two physician assistants. The surgeon is actually rather poor at communicating as he's a bit shy and tends to talk to us without looking at us, but this has been more than made up for by the two PAs who are masters at explaining things and answering questions, as were the urology department receptionists. I have never felt that if I see the PA I am getting second best.
For my RT I was also dealt with by three diffeent people, but all were excellent (it was the RT receptionists that let the side down.)

I always have a list of questions when I have an appointment but often find that most of my questions get answered by what they tell me first. And they have always wanted to know if there is anything bothering me. I am being treated by a specialist cancer institute so they know that it can be a mental strain and the sheet of useful phone numbers etc that I was given up-front included the in-house support team. (It also included stuff about their sexuality & cancer clinic)

It is absolutely normal to worry or be scared or feel completely lost when confronted by cancer. It is also absolutely normal to have good days and bads days, sleepless nights etc and feel really low . So don't add to things by also worrying about the fact that your are worrying, just do what you are doing which is asking who can help you sort things out better.

There are also lots of wives, daughters, partners here who will probably have much better things to say than me.

I hope that next week you find who/what you want/need.

Alfred

Glad you found someone who specializes in uro cancer. It is a must that you find a medical team you can work with and who will work with you. I am sure that your concern and effort to stay positive are more of a help to your hubby than you know (or he tells you). Do what you need to keep yourself strong. Listen to your gut but know that feelings flucuate a lot. Please keep us posted and glad you found this site.
CareBear

Georcass, thanks for clarifying my PSA question. I do hope that you find answers - and a game plan - soon. It sucks when insurance restricts who and where you can go for medical care. Perhaps a call to your insurance company might help as they might approve a second opinion/consultation out of network...just a suggestion.

Hope you stay with us and let us know how things are going for you and your beloved - I know this is very hard for you but we're all here to get you through this.