Struggling to get a grip...

jossan · April 2017

Hi, I am writing on this forum in the hope to get some answers to my questions after I was told that have about 1 cm lump in my left kidney.

I saw my GP for very frequent urination, 20-30 times /day in August- sept 2016. It was so bad that I was feeling nausea as soon as I had a little urine in my bladder. My urine was smelling foul but I thought it is just due to vitamin D pills that I take because I had border line vit D lab values and I was felling less tired when I took it! I went to the GP in Nov 2016 and he found blood in my urine. Also a culture of the urine came negative excluding UTI. I was referred to Urologist. Urologist did cystoscopi in Dec. The Bladder looked ok and he sent me for a CT scan. CT scan was perormed on 24 Jan and the "incidental finding " of 1 cm big growth was reported. The radiologist recommended to follow up with the ultra sound and MRI in order to characterize what exactly this change is.

ultra sound was done on 7 March, and thereafter I was contacted by the doctor on phone, who told me that it is too early to say or do anything and they will call me back for another scan in Sept (6 months after the ultrasound) and then will decide what to do.

Surprisingly the doctor did not do any chest Xray. The latest blood work done in March is ok. Abdomen CT scan reports lump in left kidney, no remarks on any other organs.

But my prolem is that I have pain in my lower back and am so fatigued that it really interferes with my daily work. Also I have pain in my Groin, and arm pits although I feel no enlarged lymph nodes All the doctors I have seen say that the lower back pain and fatigue are not related to "kidney finding"". I also have a lot of hair loss.

Now when I look back so I can see that I had a similar frequent urination episode in 2014 and have been having fatigue off and on since Sept 2014! I also started loosing hair around that time which continues until today. I saw the G P (I changed GP during this time as I was not feeling they are giving me proper attention) several times, all the blood work they did times and again came ok. But not sure if they ever checked my urine, do not remember to have even mentioned it to the doctor, as the frequent urination was coming and going. I was also blaming too much tea drinking!

My question are:

Was fatigue one of the symptoms at the time /prior to your diagnosis? Does it get better any time? what to expect during this wanting period of 6 months. any advice how to keep myself positive :-(

should not a chest X-ray be done?

Thanks for listening to my story

Jossan

APny · April 2017

I just wrote out a long

I just wrote out a long response and was told "access denied." Hmmm. Let's hope this one doesn't go off into cyberspace. Anyway, what I said was that I too had fatigue but since I also had iron deficiency anemia that was most likely the cause. Your blood test would have ruled that out. The good news is that at 1 cm your tumor is very small and unlikely to have spread to your lungs. Hence the no x-ray. I personally would not wait six months but would seek another opinion from a urologigist with lots of experience with kidney cancer and have him look at your CT scan. Hopefully it's just a harmless cysts but since it already caused bleeding and it's not a UTI, it may have to come out regardless. It's so small that a partial nephrectomy would most likely be the end of it. All the best to you and do try to see another urologist so you can have resolution one way or another.

Allochka · April 2017

Hi and welcome. My husband

Hi and welcome. My husband had severe fatigue, but his was caused by Hep C, not by his tumor.

As Apny said, 1 cm is a very tiny growth. It will do no harm in 6 months. But I myself wouldn't be able to live with uncertainty. Second opinion is a great idea

foxhd · April 2017

See another

doctor. Soon.

Bay Area Guy · April 2017

I had a 1.5cm lesion

I had a 1.5cm lesion discovered on my right kidney late in 2013. My primary doc referred me to a urologic oncologist at Stanford University. He said the standard of care for lesions that size is active surveillance. However, he also said that if I couldn't handle the psychological aspects of having the lesion inside, he could get it out. I went with the active surveillance and every six months, I had either a CT or ultrasound, but no chest x-rays. In April, 2016, an ultrasound measured the lesion at 1.8 cm, still small but, since it had grown, the decision to remove it was made and on June 22nd, I had robotic surgery.

I saw that you were referred to a urologist. If that urologist does not specialize in kidney cancer, you might consider getting your primary to refer you to one who does.

Best wishes.

jossan · April 2017

Thanks all for your answers.

Thanks all for your answers. I am so tired that I cant imagine living a life with this fatigue. all blood work ok except ESR which is 44 (dont know the unit). Bay Area Guy, did you any time under or before your survelliance have high ESR? or anybody else with a kidney leison had increased levels of ESR?

Bay Area Guy · April 2017

jossan said:
Thanks all for your answers.
Thanks all for your answers. I am so tired that I cant imagine living a life with this fatigue. all blood work ok except ESR which is 44 (dont know the unit). Bay Area Guy, did you any time under or before your survelliance have high ESR? or anybody else with a kidney leison had increased levels of ESR?

All of my blood test numbers

All of my blood test numbers were fine.....no abnormalities and, other than the microscopic blood in my urine just that one time, no symptoms at all. I just rechecked my blood test results from both before and after to make sure. Everything down the middle.

The only issue I've ever had with blood work was when I had some pretty invasive intestinal surgery and I became anemic.

I have some familiarity, however, with ESR due to a medical issue my 90 year old mother-in-law is presently going through.

Struggling to get a grip...

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