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Unexpected Just found out is RCC

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014
On June 24, 2014 I went to ER to be treated for vertigo, naucea and headache. Just that. After a; negative result  head scan, they did an abdominal scan... later, another  with contrast.... they found a mass in my left kidney and a cyst on my right... I was admitted for more tests and labs for 5 days... They want to remove my left kidney for RCC and part of my right.  MRI results are RCC left and cyst on the right.  I'll have another opinion this Wednesday. What alternative medicine do you recommend me? I'll be more than glad.
icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

Arlene, The doctors suggestion of a full neph on 1 kidney and a partial neph on the other suggests that they think you have RCC in both Kidneys. What is the size of the cyst?

What is the size of the tumor in the left kidney? With a diagnosis of possible bi-lateral Kidney Cancer you want an opinion as far up the food chain as possible such as a University where they do research on Kidney Cancer. There are prcedures to remove small cyyts less than a partil which may or may not be appropriate for you such as Cyro (freezing) or RFA (xray zapping). The removal of one kidney is something almost all of us have had. Mine was 12 years ago.

At this point get that second opinion which you have scheduled.

 

Icemantoo

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Dear Icemantoo

During my 5 days in the hospital I had two doctors already, because one of the doctors quited my case. Then He called on another doctor to be on charge of my case. The second doctor was horrible; describing all the procedures very cold and drastically. I left the hospitlal with a clear mind and Idea to search for another opinion. And found what all people call the best doctor in Orlando, FL.

 FINDINGS:

KIDNEYS: Heterogeneous solid mass arising from the upper pole of left kidney along the medial aspect extending up to the renal pelvis measures 6.6 x 6.8 x 5.6 cm. Shows necrotic or cystic areas with heterogenous enhancement on postcontrast images. Mass effect on the collecting system with mild upper pole hydronephrosis. Small cyst in the left upper pole measures 1 x 0.8 cm. Complex cystic lesion in the lower pole of right kidney measures 3.9 x 3.6 x 5.5 cm. Internal thick septa which show enhancement on postcontrast images. Cystic areas overlying the right lower pole collecting system probably represents dilated calyces.. Draining renal veins are patent.

This is the exactly description on my MRI with contrast.

IMPRESSION:

1. Solid enhancing left mass consistent with renal cell carcinoma. The mass invades the left collecting system with mild hydronephrosis involving the upper pole. Small left renal syst.

2. Complex cystic mass with internal thick enhancing septa in the lower pole of the right kidney. Cystic renal cell carcinoma suspected. Small cystic areas in the right lower pole suggestive of dilated calyces. Urology consult and follow up recommended.

3. Draining renal veins are patent. No Lymphadenopathy.

4. Probable renal right hepatic cyst. Hepatic steatosis.

5. Dranining renal.

 

I will have a biopsy on my right kidney.... Based on your experience, I need your opinion. Blessings Arlene

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

Arlene

 

I wish I had further thoughts on this, but I do not. This (bilateral RCC) is in my opinion an area strictly for the medical profession and as a lay person my opinion is of no value.

 

I wish you good luck with the biopsy and wish I had a magic wand to make at least one of the tumors or cysts go away.

 

Icemantoo

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

Bilateral is rare according to what is published.  Second opinion is advised.  Many of us have small cyst on our remaining kidneys.  I have one about 8 mm on my remaining left kidney for example. Mine requires monitoring but is probably benign. You have found a good place to converse about things but the advice you get here is worth what you pay for it.  Get the best professionals you can.  Some here can really help in locating the experts.  Hang in there. 

 

MattyMar
Posts: 7
Joined: Aug 2014

Yes, cryo might be an option. Depends on size, stage, location. Most of all arm yourself with knowledge. Here is good and look up everything you can. Knowledge will help you make the right decision for you along with your doctor. Good Luck and Prayers!

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

Arlene,

 

Assuming you have RCC in the left kidney is it small enough or otherwise suitable for a partial?

Usually the doctor does not suggest a partial or full neph for your right kidney unless there is evidence that the cyst is malignant or large or growing. Sometimes the partials suggested are as small as 5 or 10% of the Kidney. That could work out for you.

Rcc in one or the other of your Kidneys is very curable from the surgery alone unless the tumor is very large.

Is the cyst on your right kidney small enough that the doctor can watch and wait?

These are my thoughts on questions to raise at the time of your second opinion.

 

Remember a cyst alone o the other Kidney is something that you can live with and many of us have. The problem arises when and if it is no longer benign.

 

Icemantoo

 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

If they are talking about both kidneys, find a surgeon that specializes in RCC.  You do not say how big the tumors are.  There may be better treatment options. With more complex disease, you want someone who spent the career on this, and not someone that does this in addition to the bread and butter visectomay.

JoanneNH
Posts: 115
Joined: Sep 2013

If you tell us where you live, people can give you some recommendations on centers/doctors who specialize in this.   Please let us know.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Cysts are common and usually do not need any treatment. But if you have bilateral rcc, then immediately call the NCI. They are the best anywhere for bilateral rcc. And if you are young then the NCI will likely take you. But only if you have bilateral rcc. Ron

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Let me add to the above. Bilateral rcc kidney Cancer may be hereditary. But also you may be at risk for recurrence. So preserving as much of the kidneys is important. The NCI folks may be able to do a partial and save some of the kidney. Ron

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Thank you JoanneNH. I live in Central Florida, Orlando exactly. And my third opinion and doctor is Dr. Vipul Patel. Tomorrow I will have a biopsy of my right kidney to confirm exactly the status. Plese read above, I wrote the MRI Findings and Impression. Thank you so much. Blessings

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

If there's any chance you have bilateral RCC, you really need to talk to an expert. I saw a video by one of the experts at NIH discussing inherited RCC, and he said that they were having lots of success just watching small tumors in many patients in order to preserve kidney function. The dr I was on the video went to medical school with my uncle. He's been studying RCC at NIH for 30-40 years and is one of the leading experts on hereditary RCC. If you want me to find his name, I will. (Sorry, I forgot).

How big is your mass in the left kidney? ANd the cyst in the right? Why would they want to surgically remove the cyst? Many of us have small cysts in our kidneys as we age. I had a small one in my other kidney, but they didn't touch it.

Make sure you're talking to experts on RCC. You don't want surgeries on both kidneys unless you really, really have to do it. Partials can easily turn into radicals if complications occur.

Is the doc you're seeing a urologic oncologist? (Not just a standard urologist.)

This website gives excellent information about different types of kidney masses and different ways they can be treated:

http://www.kidneycancerinstitute.com/

The site is maintained by my urologic oncologist, Dr. Landman, head of urology at the University of California, Irvine.

If you need referrals, post your approximate location and perhaps those of us here can help you find a suitable expert (assuming you don't have one).

Best to you.

Todd

P.S. There's no rush. These tumors are slow growing. It's better to get it right than to rush things. If you're being rushed, take a step back until you get the right opinion. Personally, I wasn't happy until I saw 2-3 experts and heard a consensus.

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Dear Todd: Thank you for your advise. Please, read above info I posted for the details of the MRI. That's exactly what I told the Doctors. Based on the studies is on Stage 2, and I told them to wait. Left Kidney RCC in encapsulated. Based on the sized the doc told me it was about ten years with the left kidney. I have no family history of kidney cancer. But just found out my grandmother was born with only one kidney and today I found our my cousin was born also with just one kidney. No cancer history.

At this moment I have no symptoms at all. It was a blessing to find out now on time... 

The doctors recomended me today to do a biopsy of my right kidney; to avoid surgery if it's negative. I am so new with all this; and sometimes overwhelming; but I trust God and prayers to make the right desicion with the best doctor.

 

Thank you for your help; and thanks to all... Arlene

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

ArleneBo, please get a second opinion.  The first doctor I saw indicated my tumor was in a difficult location and a full nephrectomy would be necessary. I went to Memorial Sloan Kettering and found a wonderful urologist oncologist who does open partial nephrectomies.  When he did my surgery 4 weeks ago, it was worse than the scans showed--the tumor was on the vein going to my right kidney.  This did not deter my doctor.  He removed the tumor and preserved 95% of my right kidney.  I found my doctor after reading the American Urological Association Guidelines on renal masses.  They can be found here, and perhaps a doctor on the panel is near you.  As Iceman suggested, try to go to a hospital connected to a University that does research.  Guidelines:  https://www.auanet.org/education/guidelines/renal-mass.cfm

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Arlene,

How are you doing? What have you found out? Please let us know.

Hope all is well with you.

Todd

freddyv33
Posts: 6
Joined: Aug 2014

I had a 13 cm mass on my right kidney and a cyst on my left. They just left the cyst. Apparently this is not unusual. Make sure you get your surgery done by an expert with plenty of experience if at all possible. My nephrectomy was 11 hours with a great doctor at OHSU (Dr LaRochelle) in Portland, OR. My urologist in my hometown basically told me it wasn't worth doing and that I was going to die...that was 2 and a half years ago and I am still kicking and screaming!

Cancer for me has been a great eye-opener. It can be like being born again if you accept the challenge and are lucky and take on the right attitude. Learn to enjoy every moment you have and realize that you have always been dying, cancer gave you the chance to appreciate your life at a whole different level.

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Dear Freddyv33:

Thank you for your post and comment. That's what I is my opinion. A biospy is going to be done tomorrow in my right kidney. Please read above the FINDINGS AND IMPRESSION. I will have also a nephrologist appointment this week for more details and opinions. 

I am very healthy, vegetarian, practicing kriya yoga and meditation every day. I worked as a massage therapist, plus I've been studying natural healing with different modalities. Irronic, right? My goal is to open a wellness center and help people with different modalities and techniques. Irronic, right?

I trust God will find the correct way... Since the first day I'm thankful for knowing on time; better now than later... lol right???

Is true Cancer change in a whole different level... My mision then is to help others... like all of you here. thank you so much.

Arlene B.

 

Laura76's picture
Laura76
Posts: 49
Joined: Aug 2014

Praying for you Arlene.

 

 

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Thanks, Laura:

 

Prayers have been answered. Right kidney cancelled after Biopsy reveling was a benigned cyst!

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Arlene, have you tried to get into Moffitt Cancer Center in Tampa?  I read somewhere that there are several RCC specialist oncologists there.  I'm seriously thinking about contacting them.

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

Dr. Troy Edwards at Dr. Phillips Hospital is great.  He did a partial right robotic surgery on me in March.  It was my first surgery and he did everything to make me feel comfortable about the whole process.  Hospital was also great too.  He has offices at Dr. Phillips and Ocoee.  

I had my surgery on a Monday, went home on Wednesday and on Sunday went to Alabama concert at SeaWorld.

 

Cindy

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Dear Cindy:

Thank you for the info. I will keep his name and your recomendation on mind... Be blessed!!

ArleneBo's picture
ArleneBo
Posts: 8
Joined: Aug 2014

Greetings: I feel more confident now after a month already with my kidneys news.

After praying and praying for a miracle, prayers were answered. I had a biopsy of the right kidney;  a different radiology found only a cyst full of liquid. He emptied the cyst which was mostly urine and sent to lab. Friday, I received a phone call from the doctor's office. Everything is negative and after removing the liquid, cyst became was so small that don't represent a major risk right now. Right kidney surgery is cancelled. 

Now, I requested another scan to reconfirm the left kidney status. Hoping is a speedy recovery!!!

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

Arlene,

 

You had me worried. A simple cyst at 3.5 cm is fairly large for it to be benign. Now that that is behind you the 6.8 cm buggar on your left kidney needs to be addressed. We have all had the surery. Nothing to look forward to, but once it is removed everything should be ok. It is still under 7 cm which means that absent anything negative on the biopsy it is still Stage 1.

 

Icemantoo

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