Advice/Confused Age 35

tutusbygayle

Hey there, I'm beyond grateful the forum is here! Confused is an understatement! 

Here's an outline of pass events... 

Aug 28th - burning when I pee - called one of those "MDLive" doctors said I had a UTI so she called meds in for 5 days. 

Sept 1st - still burns - went to my PCP doctor urine test came back NEG. 

Sept 6th - went to ER pain in Kidney was so bad it hurt to breathe. ER doctor discharged me with a Kidney Infection. (meds 10 Days Kefelx 500mg) 

Sept 9th - went back to ER still in pain, they did an ultrasound and found a Complex Cyst. Was told to see a Urologist.

Findings....  

Multiple left renal cysts, the largest in the mid to upper pole measuring 4.2 x 3.9 x 3.3 cm, associated mural calcification better demonstrated on recent CT, midly irregular shape with possible partial internal septation. Another cyst in the intrapolar region measuring 2.5 x 2.3 x 2.6 cm with possible complexity, there is a question of internal debris and evidence for small adjacent calcification. No definite ultrasound evidence of solid renal mass identified. 

There are a couple of bilateral tiny echogenic foci suspicious for calcifcations, suspect for small nonobstructing renal calculi.

Bilateral renal cysts, the largest in the left with evidence of mild complexity as described.

Tiny bilateral renal calcifictions, suspect for nonobstructing calculi and mural calcifications associated with cysts. 

Sept 12th - saw Urologist. He talked about surgery, but after examining me said the cyst is pushing on a nerve causing me to have a "psoas muscle strain" and gave me a referral to physical therapy to relieve the pain. 

What are your thoughts on this? Would you get a second opinion? I trust each of your opinions because you have walked this out in your life. 

Thank You for helping me understand! ((Hugs)) Gayle 

lobbyist0724

Hi Gayle,

Hi Gayle,

Welcome to the forum, and sorry to hear about your pain and the cysts. Was the CT done with contrast? Since it is needed in order to categorize the cyst and to provide the doctor about the chance of the cysts being cancerous. But the majority of the complex cysts are benign (especially when you mentioned that there is no solid components).

Also, Canadian Urology Association just released a new management guideline this year, please see the link below. Which should give you more understanding of your situation. I will keep you in my contact list since there is only a small percentage of patients having cystic RCC, information regarding the managment is quite different in comparison to the solid RCC .

CUA guideline on the management of cystic renal lesions https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365391/

Take care (hugs),

Carmen

tutusbygayle

lobbyist0724 said:

Hi Gayle,

Hi Gayle,

Welcome to the forum, and sorry to hear about your pain and the cysts. Was the CT done with contrast? Since it is needed in order to categorize the cyst and to provide the doctor about the chance of the cysts being cancerous. But the majority of the complex cysts are benign (especially when you mentioned that there is no solid components).

Also, Canadian Urology Association just released a new management guideline this year, please see the link below. Which should give you more understanding of your situation. I will keep you in my contact list since there is only a small percentage of patients having cystic RCC, information regarding the managment is quite different in comparison to the solid RCC .

CUA guideline on the management of cystic renal lesions https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365391/

Take care (hugs),

Carmen

Hi Carmen!

 Thanks for replying the CT was without contrast. It was done in the ER before finding the cyst. What do you think about the physical therap??? Is pain normal with a cyst?

icemantoo

tutusbygayle said:

Hi Carmen!

 Thanks for replying the CT was without contrast. It was done in the ER before finding the cyst. What do you think about the physical therap??? Is pain normal with a cyst?

I don't have the anwers

Gayle,

 

Because your cysts are bilateral I would get a second opinion from a top Kidney Cancer specialist at a University or top hospital.

 

Icemantoo

lobbyist0724

tutusbygayle said:

Hi Carmen!

 Thanks for replying the CT was without contrast. It was done in the ER before finding the cyst. What do you think about the physical therap??? Is pain normal with a cyst?

Completely agree with Iceman,

Completely agree with Iceman, you need to find a top notch Urologist now. For a CT without contrast, it is not possible to find the evidence to support either it is a cyst or cystic RCC (i.e. enhancement of septa, cyst wall or solid components). As mentioned in the guideline, some urologists will recommend surgical intervention for cystic lesions over 3cm. Regarding the pain, it is hard to say, it can be psychological too (happened to me). At the end of the day, please arrange to see your Urologist, knowing what it is the key!

Carmen

kidneystoneblessing

Recommend follow up and second opinion.  I am your age 34 almost 35 male and had a 3.6 cm incidental finding of a solid mass.  solid masses are more likely to be malignant.  Mine was and because I was young there was a probability I had rare histology.  Turns out I have a histology type of translocation Renal cell carcinoma(a potentially aggressive form of rcc if caught late).   

translocation rcc is found most commonly in young women and in some men and can have a cystic morphology

 

Lesson learned- get checked and a second opinion.  Being young is good cause surgery is much easier and you know exactly what was in you   Benign or cancerous.  

I was also young and confused and didn't even know kidney cancer existed.  But then I remembered that hacksaw Jim duggan has this 19 years ago and he is still alive due to early detection.  Though his rcc was the size of a football.  He is a wwe professional wrestler (YouTube him).  

tutusbygayle

Thank You All!

Okay, I'm grateful for each of you! I'm now on to finding a second opinion. I will keep you all posted! Blessing to each of you! 

((Hugs)) 

gayle

tutusbygayle

An Update

So I had my physical therapy appointment today, and honestly I feel lost after that. The PT said your doctor believes this cyst is an  accidental finding. Did he tell you that? NO! So he believes my pain has to do with muscles only. She seemed very confused after examining me. Her words "usually after we reset a patient's pelvic they fill instant relief." You however are not getting any relief.  So she sent me home with a few exercises to do. Hoping I will start to get relief soon. Im going to do these exercises and pray they work! I'm honestly feeling unheard. I feel like an idiot. 

What would you do?

APny

I would see a kidney

I would see a kidney specialist ASAP and get a second opinon. Unless I missed something that is what you were going to do and I think that's wise. PT is all well and good but I'd want another specialist to interpret the findings on those cysts.

todd121

tutusbygayle said:

An Update

So I had my physical therapy appointment today, and honestly I feel lost after that. The PT said your doctor believes this cyst is an  accidental finding. Did he tell you that? NO! So he believes my pain has to do with muscles only. She seemed very confused after examining me. Her words "usually after we reset a patient's pelvic they fill instant relief." You however are not getting any relief.  So she sent me home with a few exercises to do. Hoping I will start to get relief soon. Im going to do these exercises and pray they work! I'm honestly feeling unheard. I feel like an idiot. 

What would you do?

Specialists

Instead of a urologist see if you can find a urologic oncologist (one with RCC research would be ideal). If he/she thinks it's cancer, because of how many cysts you have and that they are in both kidneys, I'd see an medical oncologist with experience in RCC.

What you have is not at all common if it's cancer. However, if it turns out to be something like the inherited forms of RCC (which can cause multiple tumors in one or both kidneys), they have done a great deal of research on these at the NIH. This type of kidney cancer is probably the best understood type (if that's what it turns out to be). You want someone familiar with this research before going and making decisions about any treatments.

That the urologist didn't order a CT with contrast is not a good indication of competence in this area. A urologic oncologist will definitely know what to do. Depending on that, then make the decision about seeing a medical oncologist with RCC experience (lots of it if at all possible).

A medical oncologist that does research/sees only RCC patients are much more knowledgeable about the current state of research than your regular oncologist. Where a regular oncologist might see a kidney cancer patient a few times a year (if that often) a medical oncologist that concentrates on RCC will see 10's of patients a week, plus publish, plus keep up on all the research.

Best wishes,

Todd

tutusbygayle

It's been 6 Months

I didn't get a second opionin. I pushed it off like I was going CRAZY. Even my family made me feel like I was CRAZY. Tuesday was my 6mth follow up with a Ultrasound & Dr visit. 

Finding.... 

Narrative:
The LEFT kidney measures 12.0 x 5.37 x 6.38cm. There were multiple cysts seen and the largest two were noted mid/lateral at 2.61 x 2.19 x 2.13cm and complex/medial at 3.60 x 6.38 x 4.18cm. Normal echotexture and blood flow by color Doppler noted throughout. There was no hydronephrosis noted. Sized Noted 6mths ago was 4.2 x 3.9 x 3.3 cm

The RIGHT kidney measures 11.4 x 6.40 x 4.35cm.There were multiple cysts seen and the largest two were noted lateral/infeiror with calcification at 1.64 x 1.64 x 1.40cm and lateral/with calcification at 0.948 x 0.817 x 0.980cm. Normal echotexture and blood flow by color Doppler noted throughout. There was no hydronephrosis noted.

Doctor has now ordered the CT With & Without Contrast.  How do I find another doctor with RCC experience? I found one in MD, I'm in VA. I called but they said I have to make an appointment and come in. Is it realistic to travel for this?? 

Lisa7610

I traveled for mine.

I traveled for mine.

i had a few cancer patient advocates. If I’m remembering correctly, I think you can call the American Cancer Society and have them help you find advocates in your area.

Deanie0916

Hi, glad you got another ultrasound and are getting

a CT with contrast. I think the American Cancer Society is a good place to start and you are already here since this website is created and operated by the ACS! They might have a list of doctors in your area...under resources or point you in the right direction. Best wishes and prayers to you Gayle. 

tutusbygayle

todd121 said:

Specialists

Instead of a urologist see if you can find a urologic oncologist (one with RCC research would be ideal). If he/she thinks it's cancer, because of how many cysts you have and that they are in both kidneys, I'd see an medical oncologist with experience in RCC.

What you have is not at all common if it's cancer. However, if it turns out to be something like the inherited forms of RCC (which can cause multiple tumors in one or both kidneys), they have done a great deal of research on these at the NIH. This type of kidney cancer is probably the best understood type (if that's what it turns out to be). You want someone familiar with this research before going and making decisions about any treatments.

That the urologist didn't order a CT with contrast is not a good indication of competence in this area. A urologic oncologist will definitely know what to do. Depending on that, then make the decision about seeing a medical oncologist with RCC experience (lots of it if at all possible).

A medical oncologist that does research/sees only RCC patients are much more knowledgeable about the current state of research than your regular oncologist. Where a regular oncologist might see a kidney cancer patient a few times a year (if that often) a medical oncologist that concentrates on RCC will see 10's of patients a week, plus publish, plus keep up on all the research.

Best wishes,

Todd

CT Results

Impression: 2.1cm cyst right kidney, 4.1 and 1.5 cm upper to mid and mid pole left kidney. 2.6 cm cyst with focal wall calacification left kidney. 

 

What are your thought? I picked up these results today because I needed to know. This is exhausting. My doctor is out of town, and will call me Monday. She ordered the CT to  classify watch stage it is. I was hoping this answer would be listed however it isn’t. What do you think?

AnnissaP

CT with contrast is so

CT with contrast is so important. I hope you get the answers you need and soon. All the best!

tutusbygayle

CT Results

Impression: 2.1cm cyst right kidney, 4.1 and 1.5 cm upper to mid and mid pole left kidney. 2.6 cm cyst with focal wall calacification left kidney. 

What are your thought? I picked up these results today because I needed to know. This is exhausting. My doctor is out of town, and will call me Monday. She ordered the CT to  classify watch stage it is. I was hoping this answer would be listed however it isn’t. What do you think