New here! Looking for some clarity.

qrtrms
qrtrms Member Posts: 7
in Kidney Cancer #1

I am a 38 yo female. I have always had bladder and kidney problems from a young age. Had kidney stones a time or two and way to many to count uti infections. last fall I had 6 uti infections in 4 months or possibly just one that never went away. My primary dr sent me to a urologist to make sure there wasn't something going on causing the prolonged uti infection. I had a Ct scan without contrast as I am allergic to it. The Ct showed my bladder appeared normal, however the radiologist noted a nodule on left kidney. In which the urologist stated he had to check it out. So an MRI was scheduled and the results of that showed a total of 3 separate cyst less than a centimeter each. They are all scattered about kidney. Two of them are called simple on the water mid pole and inferior pole. The 3rd is on the mid pole containing hemorrhage or proteinaceous debris. I maybe just being a little crazy, but with being so young I am scared. I requested to be sent to urologist at St. Louis, mo Barnes Jewish for a second opinion. The urologist and now my primary dr have pretty much told me I didn't need to be referred. When I couldn't get anywhere with urologist referral. I went to see my primary doctor over my sinuses and asked him about to them. He acted like he would take care of it. But now the next day he has given some lame excuse and no referral. I can't get into see any of those doctors unless I have a referral. Both my primary dr and urologist  have said 2 different things that my MRI stated and one said I need a test again in 3 months and other said 6 months.  I am in a small town in which it is good for small things and basically bandaids. Of course I have scored the internet which probably has made me more scared, but I am at a loss on what to do. Anyone have any ideas on how to get an appointment without referral. Am I being crazy?

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited May 2017 #2
    Small cysts and watch and wait

    qrtrms'

    Right now it seems that you have some very small cysts which are maybe too small to diagnose one way or the other. A follow up t in 3 or 6 months for such  small cysts is not out of the ordinary. Get copies of your MRI report. Ask why they can not refer you to BJC. It may be that they have contacted the Urologist there and yours is too small to diagnose at this time. As far as Kidney Cancer issues which is probably why you are on this board they may be premaure and hopefully you will not need to join us now or in the future. Keep vigilant with your questions in the meantime and follow up with the recommended scans. Also if you haven't called BJC already find out what their requirements for a referral are.

     

    Icemantoo

  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    #3
    Hi qtrms.  I had a small

    Hi qtrms.  I had a small something detected on my right kidney in December, 2013 after a routine physical uncovered a microscopic amount of blood in my urine.  I was referred to an urologic oncologist at Stanford University and a small (1.5cm) lesion was found on my right kidney (along with several cysts in both kidneys).  At the time, he said pretty much what ice said.  The lesion was too small to really determine what the heck it was.  He said that the standard of care for something that small is to monitor it with scans every six months.  Naturally, I was concerned that if it was something nasty, it could grow or spread, so I asked him about that.  He said that kidney lesions our size typically don't grow very rapidly and also don't commonly spread.  He did say that if I was having psychological problems with just having it inside, he could have it taken out, but I chose to follow his advice.  When a scan showed it had grown a tiny bit, he said that was the time to take it out, so he referred me to a surgeon and out it came in a robotic-assisted surgery.

    But I agree with ice that your docs have given you the standard course of action for addressing the situation in your kidney.

  • qrtrms
    qrtrms Member Posts: 7
    #4
    Thank you for the replys. It

    Thank you for the replys. It makes me feel somewhat better to know that. 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #5
    Well, I can appreciate your

    Well, I can appreciate your concerns and need for a referral. I would suggest you call both your doctor's offices and tell the RN who does the referrals that you are still requesting a 2nd opinion referral. Trust your gut feeling! That inner voice is there to lead you in this life.

    Now if they still don't give you a referral, call your insurance and let them know. What I am concerned about is why you are getting so many UTIs, esp given your lifelong history of bladder/kidney problems. For that reason alone, I would want something infectious out of my body and treated.

    This may not be cancer at all. Cysts usually are not treated as far as I know. I had a cyst in the kidney that was removed with the Neoplasm along with my kidney. I also have another cyst in my remaining kidney. No problems with it. My surgeon/Urologist also showed me the difference in the margins as seen on the CT scan. Smooth margins and a cyst that lights up is not cancer. Irregular margins can be an indicator of cancer as he explained to me.

    Yes, find out why you are having all these infections. BTW, did the Urologist looks inside your bladder? Or just see that it was normal size? Get copies of your scans, MRI and radiology reports to take to the next specialist/Urologists.

    Sad, that your primary won't allow you a 2nd opinion. Hmm..Again, this may never be cancer, but still, something not healthy is inside your kidney.

    Let us know how you are doing and what results you get from these 2 docs or your insurance.

    Healing hugs,

    Jan

  • qrtrms
    qrtrms Member Posts: 7
    #6
    No Jan... my urologist never

    No Jan... my urologist never looked inside my bladder only did a Ct scan and said it appeared normal. I do have a lot of issues of not being able to hold urine very long and always need to go. He was told that but just tried to give me a pill. In which I denied didn't want to just take a pill. Like I said before I may be  just over thinking it all, but its my right for a second opinion. Really frustrated they are just blowing it off. I just want to confirm with all the problems I have had. Along with being anemic and put on iron pills has had me alarmed on we're the blood has been going. Since the iron pill raised it they didnt look any farther last October. I did go and get a copy of my test reports and have the MRI cd. My husband keeps telling me to stay off the internet it and myself are not doctors. I obviously have not listened. I believe I have been able to learn a lot from what I have read online here and other websites. Thank you for the concern. I am going to keep on it and will definitely let you know what I find out. 

    Thanks again

  • Allochka
    Allochka Member Posts: 1,072 Member
    #7
    Hello,

    Hello,

    even in worst case scenario (which is not very probable) of cancer - tumor of that size wont apread during 6 months waiting for follow up. So ot is rather safe to wait. For your peace of mind You can also send your CT and MRI images for second opinion - there are trusted services avbl online.  it would be much cheaper then performing all imaging again.

    But as Jan said - cysts are very common. My husband (former cancer patient) also have one in kidney and some in liver.

    Good luck!

    Alla

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #8
    qrtrms said:

    No Jan... my urologist never

    No Jan... my urologist never looked inside my bladder only did a Ct scan and said it appeared normal. I do have a lot of issues of not being able to hold urine very long and always need to go. He was told that but just tried to give me a pill. In which I denied didn't want to just take a pill. Like I said before I may be  just over thinking it all, but its my right for a second opinion. Really frustrated they are just blowing it off. I just want to confirm with all the problems I have had. Along with being anemic and put on iron pills has had me alarmed on we're the blood has been going. Since the iron pill raised it they didnt look any farther last October. I did go and get a copy of my test reports and have the MRI cd. My husband keeps telling me to stay off the internet it and myself are not doctors. I obviously have not listened. I believe I have been able to learn a lot from what I have read online here and other websites. Thank you for the concern. I am going to keep on it and will definitely let you know what I find out. 

    Thanks again

    For what its worth, I had

    For what its worth, I had horrible UTIs following my 1st ten pound baby. The infecitons ended up into the kidney. This went on for months. So, get this, I was told to hold my urine and only void 2x a day! Yikes! The point was to stretch my bladder back to pre-baby size. SEems the baby sat on my bladder and flattened it. (sorry TMI). It kinda worked.

    Yes, now they have meds to help with frequent voiding, but still. I wonder what is causing this to go into the kidney. Go for what your gut tells you. At least get a better look inside and with a specialist who treats such issues.

    Keep me posted hon,

    Jan

  • Max57
    Max57 Member Posts: 177 Member
    #9
    hi

    Calm down and relax...we all know how scary and we understand but in my opinion you over reacting... stay away from Google

  • qrtrms
    qrtrms Member Posts: 7
    edited May 2017 #10
    Not sure which doctor sent my

    Not sure which doctor sent my referral after all. I had given up and was waiting to go back for scans in a few months. I received a call last Monday from Barnes Jewish just confirming my information on a referral they had received. I was actually really surprised. I was told in 3 to 5 days they would call back if doctors thought I should be seen. Well it was 2 days later I received a call back. The doctors  had reviewed my file and scans and said I needed to be there asap. I had actually told myself to stay off the internet and had finally been sleeping instrad of worrying. Well not anymore to say the least. I go next Friday so we will see what they have to say I suppose. I am hoping and praying for good news. I mentally need this to be over. 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #11
    A teaching moment

    qtrms,

    Barnes Jewish is the lead teaching hospital for the Washington University Medical Scool as well as being the lead hospital in the BJC Hospital Group. My former son-in-law did a fellowship in Interventional Radiology there about 19 years ago. One of my granddaughters was born at MO BAP (Missouri Baptist) part of the same group 19 years ago. You will probably have a bunch of Urology residents each offering their opinions as to what your diagnosis and prognoeis are. Heres hoping for the best. Whatever it is, it is small and curable in any event.

     

    Icemantoo

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