Coming to terms with a recommendation

[Texasnewbie]

Hi,

I'm new to all of this and feel like I'm floundering around, unsure of what to do. I'm 74 and have had a urologist recommend that one of my kidneys be removed.

I've decided I wanted a second opinion, and it has proven to be a lengthier process than I expected. My urologist based his recommendation on the size of the mass. The size is 5.2 x 4.3 cm.

It's taken forever to get the referral, and now I can't get the appointment until May 31st.

I was shocked when I went to the urologist after I had the scans when he recommended kidney removal. I had no idea that would happen, and at first, just sat there, took it in, and said okay. I was sent because of "gross hematuria" that occurred over three days during a UTI in late November. The urologist didn't have the scans, just the written report at the time I saw him. Based on his experience, he said the removal was the best way to go. But I have no idea what that means for me afterward and didn't seem to think this was a big deal. After all, I still have another one. He did mention that I would have a 5-year life expectancy.

I've been getting weekly phone calls from his office as they want me to schedule the surgery, and I need to get a heart pre-op, but since I now want a second opinion, I won't get that referral until after the second opinion.

I don't know anyone with renal problems to talk to about all this. I'm feeling pressured, and that is not helping as I feel I need to know and understand more. Has anyone gone through this or have any recommendations on how to navigate all this? No one in my family has gone through anything like this. None of my friends.

Is this a normal timeline for a second opinion? Thanks!

[jodaer]

What does your pcp say? I would be requesting to see a nephrologist. I would hesitate to take the advice to remove a kidney from a urologist. And, no doctor should say 5-year life expectancy unless you have something compelling going on. Is the mass causing the hematuria? Is it cancerous?

[Texasnewbie in reply to jodaer]

Thank you for responding so quickly. To be honest, I don't know if hematuria is the cause because no one actually said it. However, in November I did have 3 days of "gross hematuria" at the beginning of a UTI that cleared up when I received medication. I'm guessing pcp is my regular doctor? He just sent me to the urologist when I went to see him in February and then the urologist had me get scans. When I saw the urologist after the scans, he told me I should have my kidney removed. I think my regular doctor agrees with him. I was going to a nephrologist for a referral but my regular doctor said no, I should see a urologist. It's all very confusing to me and, honestly, none of it is very clear.

[Texasnewbie in reply to Texasnewbie]

And no, I have not been told it is cancerous. Just "likely" based on the urologist's experience.

[jodaer]

If you can finagle a referral to a nephrologist, I would do it. Do you need the referral due to insurance guidelines? Or maybe even a new PCP (yes regular doctor.) You need to talk to someone who will listen to you and answer your questions

[Texasnewbie in reply to jodaer]

Thank you. I really like my doctor and have been putting off getting a new one. I moved across town and now it's an hour and a half drive to get there. I've also stayed because, in the past, the office has been wonderful but now they're severely under-staffed and it seems to be causing a lot of problems. I was actually thinking earlier today that I might need to change doctors. I just hate trying to find one with the "right fit." I do need to talk to someone about all this.

[jodaer]

It's hard to change doctors and even harder to find one that fits you. You might ask for recommendations from friends, check the on line sites for doctor recommendations. Good luck and let us know how the search and you are doing.

[Darlenia]

I completely agree with you to get a second opinion from a nephrologist. It seems you have a mass inside your kidney and a nephrologist would know all about those masses and how to approach them. S/he also will have the knowledge of the best surgeon(s) to take care of that mass and who can determine whether you're a candidate for kidney-sparing surgery or not. In any event, I would keep the May 31st appointment with the nephrologist on the books. If possible, call that office again and let them know that if they have a cancellation anytime before then, you're available to fill it. In addition, Medicare also keeps lists of nephrologists who will take those on Medicare. (Your secondary plan has similar listings.) Perhaps you can go to the Medicare website and find another nephrologist who may be able to take you earlier. Always remember that where there's a will, there's a way. We're always here for you. Let us know how it all turns out! Here's the Medicarelink: medicare.gov/care-compare/?...

[drmind]

Wow. This seems like bullying. All i know is that I would want a nephologist examining me and I would want my questions answered. Has anyone thought about doing a biopsy? It seems very odd that everyone is pressuring you to have the surgery right away. All your questions seem legitimate and should be answered. You may want to try the site Medifind to locate a suitable doctor.

[nonna70]

Absolutely. Whichever dr. ask them to give you an English (not medicalese). When I first met my neph, he said "You ask a lot of questions"-now he's used to me and answers them. God bless.

[Texasnewbie in reply to nonna70]

I was misdiagnosed when I was 28 and at the time my family was told to go home and plan my funeral. I've always been very cautious and ask a lot of questions.

[1937em]

I think you need to see a nephrologist or an oncologist or your personal physician to make sure this is correct. I would hate to think the urologist that wants your kidney removed wants one to give to someone else, but who knows? Hopefully, not!! He may be honest and wants to save your life. In the meantime just tell the urologist you want a second opinion, which anyone would do anyway, but make sure you choose who to see.

[suzell56]

When I was dx'd with CKD, my primary dr sent me immediately to the nephrologist and the nephrologist referred me to an urologist. The nephrologist explained that they mainly deal with the numbers and conditions of the kidney and the urologist does the surgery. If you are straight Medicare you do NOT need a referral, if you are on a planned insurance program you do need one. Like someone above stated, search on the internet for a nephrologist and read up on their credentials & reviews. I too had to go for a second opinion because my first dr was stating there was nothing wrong and that kidneys don't hurt. I went for a second opinion and found out that the kidney was not working at all and should be removed.

Personally I would too go for a second opinion and have the primary dr send you a stat referral. Good luck and God Bless.

[suzell56]

Where in TX are you?

[Texasnewbie in reply to suzell56]

I'm in the northwest Houston area, called Cypress.

[winnabago]

I had my left kidney removed about one yer ago. My urologist recommended that it all had to come out. It was a cancer that had to come out. My urologist did the operation with a robot Regarding a second opinion, if you have to do it, do it. My operation was about four and a half hours, and went home the next day. Only complications were in my intestines were they had been turned and caused pain for two to three days. I eat a normal diet, my other kidney seems to be up and running normally, and, one of my Dr's said, they would rather see one healthy kidney versus two kidneys not working very well. You will be tested with many test's for your remaining kidney. Trust all goes well with you, keep us all posted .

[Texasnewbie in reply to winnabago]

Thank you so much for your reply. I appreciate it so much.

[winnabago in reply to Texasnewbie]

No problem. Le us all know how you are doing.

[Texasnewbie]

UPDATE: Thank you so much for all the quick responses. I'm so glad to see so many echoing my original choice of a nephrologist.

I spent all day yesterday working on this and thought I had finally worked out a possible option. then today the office called but the date for this doctor was August. I said that wouldn't work. I called back as I figured I might as well get the appointment no matter what I did in the interim. Had a bit of a meltdown. The transferred me to someone who said they had another doctor available for 10 am tomorrow and that office is only 15 minutes from my house. I don't have time to get a referral through normal channels but another part of their group will call me later today to see what can be done. I'm hoping to get it all worked out. We'll see.

[Darlenia in reply to Texasnewbie]

Excellent news!

[drmind in reply to Texasnewbie]

Sounds good. Don't give up.

[nonna70]

That's a wonderful praise!