Here's one for the book - Can someone help me out with this?

In March I saw a Urologist and because I wasn't exhibiting any symptoms just said to follow up with my gyne onc and that I didn't need to see him again.  (I did have a trace of leukocyts and blood)   By July, I am feeling awful and my kidney from a PET scan in July showed that it was already decreased so then it was decided I did need a stent.  I saw a different Urologist and two days prior to the stent placement, I had urinalysis done and (although I wasn't exhibiting any real symptoms other than headaches) my results had high RBC cells in the urine, My blood tests revealed flagged RBC; HGB, HCT and ABS Basophils.  I felt like crap and felt I was going downhill pretty quick.  Luckily I had my stent placed 2 days later and have been feeling better ever since compared to what I had been feeling.

But now on my PET/MRI it indicates I have decreased left kidney function.  It is amazing that in only a short period of time all of that happened.   And without normal symptoms. 

Ok.   I think I am done ranting.

Double Whammy said:

I have no idea how doctors think

But it feels like they hope whatever is going on that causes abnormal lab results will just go away.  Unless the lab work is waaaaay off, it doesn't seem like it matters much to them, but I get a little crazy when I have an abnormal result and am told "your labs are beautiful".  Beautiful to who (whom?)?    It often seems like if it's not their area of expertise, they don't even want to acknowledge the problem. 

Have you seen a nephrologist?  Urogynecologist?  Can you see one without a referral?   Not everything has to be related to cancer as you well know.    I'm seeing a urogynecologist in November for old lady stuff (incontinence), but I have had some wonky lab work including a urinalysis similar to yours that I was told was fine, slightly low GFR (back to normal now), elevated BUN, and I had my very first ever bladder infection this summer with visible blood.  None of the docs seem the least bit concerned, but I got this referral because of my bladder leaks and I will discuss all of this with her then.  I also think they only look at what is right in front of them at the moment and unless there is a huge abnormality, they won't even look at trends over time.  (maybe I'm wrong but I don't think so).   I'm pretty sure they don't even think about us until about 2 minutes before they go into the room to see us or you call and ask about something.    

Hope you can get some satisfactory answers soon.  You don't feel right, your scan doesn't look right, and some labs are wonky.  Maybe at least repeat the labs soon and see if anything has improved.  You seem really frustrated. 

Suzanne

HI Suzanne:

I have been through a litany of doctors to rule out everything that I think can be happening with me.   I went to an ENT, who at that time said I was fine but was worried about my blood pressure reading while I was at his office.   He did inform my PCP about my blood pressure.   However, my PCP didn't even call me about it.    I ask about a month and a half later whether they got sometime from my ENT and they said yes.

These left sided headaches with pressure and eye auras were really annoying and scarry at times.  It was the reason I started diligently seeking what was causing it.  I found out I do not have sleep apena.   The only thing I have left to see is a Neurologist but there wasn't an opening for her until November unless someone cancels.

I am seeing a Urologist.  In fact I saw one in March and because I wasn't having symptoms he just sent me back to my gyne/onc and said he didn't need to see me anymore.   My gyne/onc at that time wanted the stent in.   I probably could have prevented a lot of this if a stent was put in at that time but that is water over the bridge now.   By the way, my GRFe at the time right prior to my stent surgery in August was 52.   It is now back up to 68.   

What I am going to do now is have my PET/MRI reread and a new report given.    HOw in the heck can they give you a report without even mentioning the fact that they see a stent that wasn't there the month before?

You are so right about how they don't even look at stuff until 2 minutes prior to seeing you.    I got nervous because my current urologist's intern indicated that they had me confused with someone else.   Gives a patient a lot of confidence, doesn't it?   Now on top of all this, my 80 year old mom was just diagnosed with ICD Her2 positive breast cancer and she is trying to decide whether or not to do chemo or not (which she doesn't want to).   The cancer is already in the skin area of her right breast and one lymph node is involved.   I took her for her first mammogram.  She lives alone, is independent and drives, and doesn't want anyone taking care of her, but at some point either now (if she does treatment) or later (if she doesn't do anything) someone will have to take care of her and/or she will have to move.  

Well anyway, I hope all is going well with you.   Thanks for your response.   Sometimes it just feels better to talk about it and talk to someone who understands what you are going through.   Thanks again.   My best to you.

Kathy

Abbycat2 said:

How frustrating, Kathy

How frustrating, Kathy, to be dealing with all this medical run-around!  I work with a woman who went in to have a stent put into her ureter and the doctor couldn't place it because the ureter was completely closed.  She learned that her kidney had shriveled up and was useless.  She has had high blood pressure for quite a long time and I know that this can be associated with kidney failure.  She also has protein in her blood.  They determined that she did not have bone cancer.  Your situation with your kidney is disturbing.  I would think that the stent would improve the kidney function, but I don't know much about it.  The fact that your stent was never mentioned in your PET MRI seems odd to me.  I would think it would show up like a beacon on the test!  And wasn't analysing the mass the purpose of the PET MRI?   It is all very confusing... 

I am very sorry to hear about your mother.  My closest and dearest friend, like a sister to me, was diagnosed three years ago with bilateral breast cancer.  All along the doctors were concerned about the cancer in one of her breast-Her2 neu positive- because it is an aggressive cancer.  Her Her2 neu cancer invaded the sentinel node only.  Just one lousy lymph node had micro-matastasis! No cancer was found in a lymph node in the other breast.   She had Herceptin weekly for a while and then less often, 6 cycles of two types of chemo and 30 radiation treatments on both breast (5 days a week times 6 weeks).  I assisted her through many of her appointments and made it a point to learn everything I could about her cancers.  She had at least 3 or 4 different types of breast cancer, but all along it was the Her2 neu positive cancer the oncologist was most worried about.  She is cancer free today and doing great now.  Herceptin is a targeted therapy that targets and kills only the breast cancer with the over-expression of the Her2 neu protein.  It is a wonderful drug and it has really made a difference in the treatment of this particular type of breast cancer. 

I wish you and your Mom and family the very best, Kathy. I hope you can get to the bottom of your concerns. 

Take Care,

Cathy

Thanks for your reply and wishes for my mom.   

with regard to my pet MRI I am working on getting it reread.   I will let you know.    My battery on my phone is going do I will reply again later

Kathy