Newbie Here....venting/feedback

yecats731

Hello, I am a 52 yr old, widowed mother of 2.  I just joined the message board last night in need of people who can relate to my story.  I started going to the doctors in June 2014 due to a terrible pain on my right side. Went to a GI Dr. In Dec 2014, thinking it may be my bowels. He asked me "what is going on with your kidneys, I saw your ultrasound you took in June and it's aids your right kidney looks suspicious".  I felt like I wanted to faint, because I knew our family had polycystic Kidney Disease  history. And supposingly my general practioner was keeping an eye on that. And I was told my kidney were fine. Also I was told in June my Ultrasound came back good, no problems. As soon as I left the GI Dr's office I called my then General Physicians office and explained the the receptionist what the GI Dr had told me and I needed to get in ASAP to see Dr. She  told me  the Dr is double booked and didn't want to be triple booked....needless to say I lost it!!!!! So I went to another Dr who I had years ago, he knew about my family history of kidney disease. Immediately he sent me to a Nephrologist and I was told I had CKD. He suggested I get a biopsy to see the reason for Kidney failure, however, he was sure it was due to uncontrolled Blood Pressure. June 2015 I had a renal biopsy the result came back as he thought bus also came back with a report of RCC in left kidney. Like me the Dr's were floored. The Urologist I was sent to said it was slow growing cancer contained in kidney so he recommends to just watch it. my Nephrologist didn't agree so he suggested I get a second opinion. In Aug. 2015 I went to a well know hospital in my area. That Urologist suggested I get a CAT scan with contrast....the other Dr's wouldnt because of my failing kidneys. I agreed and thank God I did that evening I got the report through my portal saying I had one very small leasion in left kidney, which by the grace of God they hit it while doing biopsy. The right kidney has 5 leasion (that's what was picked up on the ultrasound in 2014, SMH. Fast forward to the present.....the 2nd Urologist also suggested waiting a while since kidneys were still holding up. However my Nepherologist and Hemotologist/Oncologist felt that kidneys need to be removed to prevent spreading, I agreed as well. So now we are here I am scheduled for a Radical nephrectomy to remove BOTH kidneys. I will be going on Dialysis 3 times a week. To this day I am still having that terrible pain that led me to the Dr's. All the Dr's keep telling me the pain isn't kidney related.....I refuse to believe that. Every person I have talked to who had kidney cancer said they had pain. The only dr who said it was kidney related was my Hemotologist/oncologist. I am starting to get antsy due to the uncertainty. I know this is going to be a challenge. I was told I would have to be cancer free for 2 yrs before I could be put on transplant list

icemantoo

Get an expert opinion

yecats,  ]

As you seem to be aware you are coming here with a very difficult diagnosis. You did not give the size of your tumors. While a full nepherectomy is the safeest way to prevent recurrance. A partial nepherectomy or other procedure combined with some type of drugs may be an option. Seek out a top cutting edge surgeon at a top hospital or medical school to explore other options. Being told you need 2 nepherectomies is not acceptable without seeking a second opinion from one of the top doctors in this field that this is your only or best option.

 

Icemantoo

hardo718

icemantoo said:

Get an expert opinion

yecats,  ]

As you seem to be aware you are coming here with a very difficult diagnosis. You did not give the size of your tumors. While a full nepherectomy is the safeest way to prevent recurrance. A partial nepherectomy or other procedure combined with some type of drugs may be an option. Seek out a top cutting edge surgeon at a top hospital or medical school to explore other options. Being told you need 2 nepherectomies is not acceptable without seeking a second opinion from one of the top doctors in this field that this is your only or best option.

 

Icemantoo

Welcome Yecats

I'm going to agree with Icemantoo.  Please get another opinion.....that's the most "radical" opinion I've heard of. 

We'll all be here to walk this path with you, if you choose to involve us. 

Personally, I did not have pain perse', mine was what I call discomfort.  When I would roll to my left side in my sleep it would wake me cause it felt like I was rolling over a tennis ball.  I was told by my doctor (a urologic/oncologist) that this is not unusual while the cyst is in a growth mode.

I'll keep you in my prayers.

Donna~

mrou50

Second Opinion

This is big you do need  a second opinion make sure if you can to meet with an oncologist not a surgeon let her/him determine what is the next step.

 

Mark

foroughsh

Are they going to remove your

Are they going to remove your left kidney because of ome small lesion? Like others I think it's good yo have second opinion, as kidney tumors are very slow growing and patient can be on survillence for a long time, I personally know someone who had small lesion on one kidney and his other kidney didn't work well, so his orologist postponded his surgery as long as he could. The best option for surgery is partial if the tumor is small and the position makes it possible.   no paper has ever proved any better prognosis with radical surgery compared with partial.

Forough

 

APny

foroughsh said:

Are they going to remove your

Are they going to remove your left kidney because of ome small lesion? Like others I think it's good yo have second opinion, as kidney tumors are very slow growing and patient can be on survillence for a long time, I personally know someone who had small lesion on one kidney and his other kidney didn't work well, so his orologist postponded his surgery as long as he could. The best option for surgery is partial if the tumor is small and the position makes it possible.   no paper has ever proved any better prognosis with radical surgery compared with partial.

Forough

 

Definitely get a second

Definitely get a second opinion. No way would I agree to having both kidneys removed without a second, or even third opinion. If I understood right, your left kidney has a single lesion. An experienced urologic oncologist/surgeon may be able to remove it and save most of your kidney. Partial nephrectomies are more difficult and require more skill. Which is why not everyone does them. Please do not agree to the removal of your kidneys without seeking agreement from experts in this disease. Wishing you the best!

NewDay

APny said:

Definitely get a second

Definitely get a second opinion. No way would I agree to having both kidneys removed without a second, or even third opinion. If I understood right, your left kidney has a single lesion. An experienced urologic oncologist/surgeon may be able to remove it and save most of your kidney. Partial nephrectomies are more difficult and require more skill. Which is why not everyone does them. Please do not agree to the removal of your kidneys without seeking agreement from experts in this disease. Wishing you the best!

Please get a second opinion

I highly recommend getting a second opinon.  Kidney cancer is not rare, but is uncommon enough that many medical oncologists aren't extremely knowledgeable about it.  If at all possible, I would see an RCC specialist since removing both kidneys is such a drastic, life changing decision.  

Kidney cancer in both kidneys is not unheard of but very uncommon and often happens in the hereditary types.  NIH/NCI in Bethesda has some of the best experts in the world in hereditary kidney cancer.  You might want to talk to their genetics counselor to get her opinion whether they might want to see you and be sure to tell her that it is in both kidneys and you about to have them both removed.   If your tumors are small, you should be safe enough to wait long enough to get these opinions.  Her number is 301-402-7911.  I know she is about to retire, but maybe she hasn't yet.

I love this board, but I also highly recommend that you also join another board at SmartPatients.com.  They have people in serious condition who have been dealing with this for a long time and can offer additional advice.

Did they give you a copy of the pathology report?  It would be good if you could share with us the information on it such as size, grade, type.

Where are you being treated?

Kathy

Footstomper

hardo718 said:

Welcome Yecats

I'm going to agree with Icemantoo.  Please get another opinion.....that's the most "radical" opinion I've heard of. 

We'll all be here to walk this path with you, if you choose to involve us. 

Personally, I did not have pain perse', mine was what I call discomfort.  When I would roll to my left side in my sleep it would wake me cause it felt like I was rolling over a tennis ball.  I was told by my doctor (a urologic/oncologist) that this is not unusual while the cyst is in a growth mode.

I'll keep you in my prayers.

Donna~

Interesting and confusing opinions

I had no pain. I just started peeing blood.

 

And yes get another opinion

todd121

Another Opinion

I'm just going to chime in with a "me too" on the other posts. Find a medical oncologist with top notch experience in RCC and get an opinion before letting them take out both your kidneys. From what you said, it sounds like too little to go on to remove both kidneys. If you have RCC in both kidneys (not clear from what you said) it would be very rare to have that and not have mets elsewhere. Very rare. Did they do other tests to stage you? (a medical oncologist would probably order a brain MRI, a CT of chest/abdomen and pelvis and a nuclear bone scan to rule out other mets). Removing your kidneys when you have mets elsewhere in your body would be very unlikely IMO. They'd most likely go with one or more of the new drugs for treating RCC.

Please get another opinion. Find a medical oncologist from one of the top cancer places in the country that concentrates on RCC. I really wouldn't want to lose both of my kidneys if it wasn't going to do me any good.

You mentioned CKD, but didn't say how bad it is. What stage did they put your CKD at?

It's not true that all kidney cancer patients had pain. I had bleeding 1 year before I was diagnosed with no pain at all. A year later I did have pain but it was because I was passing blood clots. Once the clots passed, the pain went away and for the next month until my nephrectomy I had no pain again.

I hope you'll get another opinion from a highly rated expert (medical oncologist preferably) in RCC before you let them remove your kidneys.

Todd

todd121

todd121 said:

Another Opinion

I'm just going to chime in with a "me too" on the other posts. Find a medical oncologist with top notch experience in RCC and get an opinion before letting them take out both your kidneys. From what you said, it sounds like too little to go on to remove both kidneys. If you have RCC in both kidneys (not clear from what you said) it would be very rare to have that and not have mets elsewhere. Very rare. Did they do other tests to stage you? (a medical oncologist would probably order a brain MRI, a CT of chest/abdomen and pelvis and a nuclear bone scan to rule out other mets). Removing your kidneys when you have mets elsewhere in your body would be very unlikely IMO. They'd most likely go with one or more of the new drugs for treating RCC.

Please get another opinion. Find a medical oncologist from one of the top cancer places in the country that concentrates on RCC. I really wouldn't want to lose both of my kidneys if it wasn't going to do me any good.

You mentioned CKD, but didn't say how bad it is. What stage did they put your CKD at?

It's not true that all kidney cancer patients had pain. I had bleeding 1 year before I was diagnosed with no pain at all. A year later I did have pain but it was because I was passing blood clots. Once the clots passed, the pain went away and for the next month until my nephrectomy I had no pain again.

I hope you'll get another opinion from a highly rated expert (medical oncologist preferably) in RCC before you let them remove your kidneys.

Todd

NIH - Genetic RCC

Genetic RCC is very different from the type most of us on here have. As Kathy said the NIH have been studying this type of RCC for many years in order to develop treatments for our type of RCC. They have a very good handle on this type of RCC and really understand it well. If that's the type you have, it would be well worth it if you can to get to those experts at NIH and get their opinion before having your kidneys removed.

Todd

NewDay

todd121 said:

NIH - Genetic RCC

Genetic RCC is very different from the type most of us on here have. As Kathy said the NIH have been studying this type of RCC for many years in order to develop treatments for our type of RCC. They have a very good handle on this type of RCC and really understand it well. If that's the type you have, it would be well worth it if you can to get to those experts at NIH and get their opinion before having your kidneys removed.

Todd

Unexplained pain

There were a couple of things in your story that I can relate to.  When my creatinine increased, I was sent to a nephrologist who ordered an ultrasound that did not report anything.  At the same time, I had been losing a lot of weight because I was having extreme pain when I ate or drank anything.  Because of that, my gastroenterologist ordered a CT scan, only 2 months after the ultrasound, and that was when my 9cm tumor was discovered.  I was told that the pain had nothing to do with the kidney cancer because the cancer was in my right kidney while my abdominal pain was on the left.  After 3 endoscopies and 2 colonoscopies, there still was no explanation for the pain.  But, a few months after my nephrectomy, the pain mysterioiusly disappeared.  Maybe it was coincidental, but I believe they were somehow related.  All I can say is thank God for the extreme abdominal pain or my tumor would not have been found until it was too late.

I also have kidney disease.  It is not real bad, but bad enough that I cannot have CT contrast.

Kathy

Jojo61

todd121 said:

NIH - Genetic RCC

Genetic RCC is very different from the type most of us on here have. As Kathy said the NIH have been studying this type of RCC for many years in order to develop treatments for our type of RCC. They have a very good handle on this type of RCC and really understand it well. If that's the type you have, it would be well worth it if you can to get to those experts at NIH and get their opinion before having your kidneys removed.

Todd

Hi Yecats....welcome...and

Hi Yecats....welcome...and wow. I don't have anything further to add here for advice....and agree fully with everyone's replies here. Good luck with the outcome. Please keep us posted!

Hugs

Jojo

Shecka1121

Jojo61 said:

Hi Yecats....welcome...and

Hi Yecats....welcome...and wow. I don't have anything further to add here for advice....and agree fully with everyone's replies here. Good luck with the outcome. Please keep us posted!

Hugs

Jojo

I had a small tumor and they

I had a small tumor and they offered me several options. May I suggest you go to smartpatients.com and they have a lot of resources on that site. I pray that in the end you get rid of the tumor and keep your kidney. 

yecats731

Thanks everyone for the feedback

Sorry I wasn't very detailed, I didn't want to make it too long.  I got a total of 3 other opinions.  My oncologist suggested that the right kidney definitely needed to be removed, and maybe keep left kidney until it totally failed, If that was an option. Nepherologiist said that kidney would not last for long. if they tried to do a partial Nephrectomy.  At first the second urologist gave me a couple of options but the he saw location of single lesion he agreed with the Nepherologist. 3 weeks ago I got another opinion at another Hospital in the area and he told me the same thing as the other doctors