Bilateral RCC...updates - first surgery complete
Had been having abdominal pain for some time. PCP sent me for an abdominal ultrasound. Nothing of concern discovered in abdomen but a lesion on each kidney was incidentally discovered. PCP sent me to urologist who sent me for a CT scan and chest x-ray.
I learned yesterday that the CT scans confirmed a “solid mass arising from the lower pole of the right kidney measuring 3.1 x 2.7 x 2.9 cm demonstrating exuberant enhancement. This is consistent with renal cell carcinoma until proven otherwise.”
Also - "there is a mass on the left kidney measuring 2.0 x 1.4 x 1.9 cm showing less exuberant enhancement, but clearly showing increasing density on post contrast images. This is also suspicious for renal cell carcinoma, possibly papillary subtype given the low degree of enhancement.”
Blood and urinalysis tests were both completely normal. Chest x-ray and CT scans show no signs of spread or metastasis.
My urologist wants me to see a leading kidney cancer doc and researcher at the National Cancer Institute in Maryland and is attempting to set that up. I live in Syracuse, NY. This will apparently be my second opinion.
The masses have not been biopsied but the writing is on the wall given their look on scans. I am 38 years old, in good health and am hoping we caught this early enough.
Your guidance, insights and support as survivors would be greatly appreciated as my head is spinning.
Comments
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Exuberant enhancement?
"Head spinning"? Yup, put a checkmark in that "NORMAL REACTION" box. That's where most of us were when we heard the word "cancer."
Interesting use of adjectives on the radiologist's part: The Oxford on-line dictionary's first definition for "exuberant" is "Full of energy, excitement, and cheerfulness." Of course, then it goes on to include a definition that fits a tad better, but still.
I'm sure this IS giving you a boat load of excitement, and probably not the good kind. However, there's definitely some good news here. You're in good health. Your masses are small, a size that's generally just dealt with surgically. Usually, kidney masses that are small don't give you symptoms, so you can thank your stomach pains for doing their part to get you the CT that spotted them. It doesn't appear to have spread. Your physician is looking into options for a specialty / research center (BTW, I was able to get a second SURGICAL opinion, after the urologist, so you might have even more views). It's a great time of year to travel from Syracuse to Maryland. You're in a super area to get excellent health care.
The tendency is NOT to biopsy kidney masses. So, not to worry that it hasn't been done. Plus, the kidney masses themselves tend to grow slowly, NOT fast like folks from NJ blowing through the EZ Pass lanes on the Thruway upstate.
One thing you definitely should do is take somebody along to your appointments with you. Funny how you can go from having the best memory in the world to having a brain like a sieve with this, even if you're used to medical-speak.
Sorry you're needing to be here, but glad you found the forum. When you have a little time, fill out your profile info. Keep us posted.
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Thanks, JerzyGrrl for takingJerzyGrrl said:Exuberant enhancement?
"Head spinning"? Yup, put a checkmark in that "NORMAL REACTION" box. That's where most of us were when we heard the word "cancer."
Interesting use of adjectives on the radiologist's part: The Oxford on-line dictionary's first definition for "exuberant" is "Full of energy, excitement, and cheerfulness." Of course, then it goes on to include a definition that fits a tad better, but still.
I'm sure this IS giving you a boat load of excitement, and probably not the good kind. However, there's definitely some good news here. You're in good health. Your masses are small, a size that's generally just dealt with surgically. Usually, kidney masses that are small don't give you symptoms, so you can thank your stomach pains for doing their part to get you the CT that spotted them. It doesn't appear to have spread. Your physician is looking into options for a specialty / research center (BTW, I was able to get a second SURGICAL opinion, after the urologist, so you might have even more views). It's a great time of year to travel from Syracuse to Maryland. You're in a super area to get excellent health care.
The tendency is NOT to biopsy kidney masses. So, not to worry that it hasn't been done. Plus, the kidney masses themselves tend to grow slowly, NOT fast like folks from NJ blowing through the EZ Pass lanes on the Thruway upstate.
One thing you definitely should do is take somebody along to your appointments with you. Funny how you can go from having the best memory in the world to having a brain like a sieve with this, even if you're used to medical-speak.
Sorry you're needing to be here, but glad you found the forum. When you have a little time, fill out your profile info. Keep us posted.
Thanks, JerzyGrrl for taking the time to reply to me...your humor is greatly appreciated! Laughter is the best medicine. I am happy to have found this forum.
I am only one day into this diagnosis - already the waiting is the worst part. Waiting on the doc in Maryland to view my information and scans and connect with my Urologist here.
Agreed that there is some good news around my situation, but not having a solidified "plan" in place for next steps/treatment is tough. I'm an overall positive person and will take everything in stride, day by day, test by test.
Hopefully more news to share very soon.
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Second the referral
LMC,
"My urologist wants me to see a leading kidney cancer doc and researcher at the National Cancer Institute in Maryland and is attempting to set that up. I live in Syracuse, NY. This will apparently be my second opinion. "
While both masses are small the fact that you may have bi laterak kidney cancer warrant a referral to a top Kidney Cancer Doc. Sending good karma for a sucessful resolution.
Icemantoo
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I think you're right - thanksicemantoo said:Second the referral
LMC,
"My urologist wants me to see a leading kidney cancer doc and researcher at the National Cancer Institute in Maryland and is attempting to set that up. I live in Syracuse, NY. This will apparently be my second opinion. "
While both masses are small the fact that you may have bi laterak kidney cancer warrant a referral to a top Kidney Cancer Doc. Sending good karma for a sucessful resolution.
Icemantoo
I think you're right - thanks, Icemantoo. I appreciate your insight. My doc here in Syracuse did mention that masses like this on each kidney are not common...hence the second opinion.
Hoping that the experts can put their heads together and help me figure this out. Happy to have caught it very early.
I'll take all the good karma I can get! Thanks again!
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Hereditary kidney cancer
Bilateral tumors and your young age are both strong indicators that you may have a hereditary type of RCC. I strongly suggest that you follow your doctor's recommendation to go to NCI. They are top experts in the hereditary types. It is important to know because it can make a difference in treatment. I have been there but mine was determined not to be hereditary. If your doctor runs into any roadblocks trying to get you in, I can give you info on the Genetics counselor that got me in.
I see that you mentioned a chest xray and CT scans. I hope that one of those scans was a Chest CT. Chest xrays can miss lung tumors.
Kathy
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Do what everyone says
And remember just how lucky you are. No kidding. You are having an unusual finding that is being caught fairly early looked into by a high caliber specialist. Wow! mouthful. This means your health will be closely monitored this point forward. No casual physicals. All your health needs will be addressed. Except maybe the Hair club for men.
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My Experience
i was 41 when I was diagnosed with kidney cancer. I am now 59. My mass was 7 cm and still contained in the membrane around the kidney so there was no spread to other areas. I am an engineer by trade and tend to pay attention to the numbers. Although it was 18 years ago, diagnoses by CT was 85% accurate and surgical removal was a 90% cure rate. I had surgery one week after diagnosis. There were many tests, CT's and mRi's in that week. There was also opinions by cancer center surgeons given on the phone while driving home from their day at work. This was done by surgeons at Jefferson in Phila and John Hopkins in Maryland. In the end I had the surgery done by the local urologist/surgeon because i beleived he cared the most about the outcome and it felt right to me. As NewDay indicated, K. Cancer spreads to the lungs and brian in the later stages so it will be important to get the lungs checked well. I know it is a stressful time for you. Hang in there and things will get better. Life for me, post cancer, is good. No limitations. One thing I am still not used to is being the youngest person in the waiting room waiting to be seen by the urologist, but that is minor thing.
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Lucky, lucky, lucky man
First, that you listened to signals from your body. Second, your doc listened to you. Third, these buggers have been caught very early.
Sounds like you've got great docs involved, and more on the horizon. The head spinning part, yea, normal, very normal and take it from me, the spinning may continue for a bit. Vertigo & I had a relationship for a while. I'd like to say that once "Bob the Blob" was evicted my friend veritgo went with him, but I'd be a liar. It's a process, make no mistake and you will adjust to what lies ahead. Just stay on top of it all and be patient with yourself.
Best wishes & keep us posted, we're all here for you.
Donna~
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Thank you, Kathy - greatNewDay said:Hereditary kidney cancer
Bilateral tumors and your young age are both strong indicators that you may have a hereditary type of RCC. I strongly suggest that you follow your doctor's recommendation to go to NCI. They are top experts in the hereditary types. It is important to know because it can make a difference in treatment. I have been there but mine was determined not to be hereditary. If your doctor runs into any roadblocks trying to get you in, I can give you info on the Genetics counselor that got me in.
I see that you mentioned a chest xray and CT scans. I hope that one of those scans was a Chest CT. Chest xrays can miss lung tumors.
Kathy
Thank you, Kathy - great information and insights. Much appreciated. All of my scans and testing information is on its way to the NCI. Hoping to hear back from them sooner rather than later regarding next steps. The toughest part for me right now is the waiting and knowing that I'm walking around with this in me...I just want it out. I understand that it will be a process and I will stay positive but the thoughts can be consuming at times. Trying to keep busy and living daily life like normal - luckily with lots of support.
There has not been a chest CT done at this point. I will bring that up to my Doc though. Thank you!
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Thank you, Sir - I do feelfoxhd said:Do what everyone says
And remember just how lucky you are. No kidding. You are having an unusual finding that is being caught fairly early looked into by a high caliber specialist. Wow! mouthful. This means your health will be closely monitored this point forward. No casual physicals. All your health needs will be addressed. Except maybe the Hair club for men.
Thank you, Sir - I do feel very lucky that it was caught early enough. That is not the case for so many others.
I'm ready for the road ahead...this is now my journey and I'll beat it!
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Thank you for sharing yourmrfixit50 said:My Experience
i was 41 when I was diagnosed with kidney cancer. I am now 59. My mass was 7 cm and still contained in the membrane around the kidney so there was no spread to other areas. I am an engineer by trade and tend to pay attention to the numbers. Although it was 18 years ago, diagnoses by CT was 85% accurate and surgical removal was a 90% cure rate. I had surgery one week after diagnosis. There were many tests, CT's and mRi's in that week. There was also opinions by cancer center surgeons given on the phone while driving home from their day at work. This was done by surgeons at Jefferson in Phila and John Hopkins in Maryland. In the end I had the surgery done by the local urologist/surgeon because i beleived he cared the most about the outcome and it felt right to me. As NewDay indicated, K. Cancer spreads to the lungs and brian in the later stages so it will be important to get the lungs checked well. I know it is a stressful time for you. Hang in there and things will get better. Life for me, post cancer, is good. No limitations. One thing I am still not used to is being the youngest person in the waiting room waiting to be seen by the urologist, but that is minor thing.
Thank you for sharing your story, Sir. It certainly helps to give hope and is appreciated. I have been the youngest guy in the waiting room at the Urologist during my past two visits...some looks and stares of wonder from others, but I'm okay with that. Waiting on next steps is the tough part, but I know I come through it and be a better man for it. Thanks again!
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So glad they found it early.
So glad they found it early. I am 38 as well and the tumor I have is in the same location and around the same size. I have surgery in 2wks and STILL do not believe it is real. Just waiting for a call from the dr saying he was kidding lol. Best advice I can give is to ask alllll the questions you want!! Our minds tend to wander and wonder so do not be afraid to ask them anything and everything. The good thing is that what they found are still small and thank God they even found them. You will be ok! You are young and healthy. Wishing you all the best. Stay positive and keep laughing (we named my tumor and he seems to be the punchline to most jokes now). LOL.
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Annissa - thank you forAnnissaP said:So glad they found it early.
So glad they found it early. I am 38 as well and the tumor I have is in the same location and around the same size. I have surgery in 2wks and STILL do not believe it is real. Just waiting for a call from the dr saying he was kidding lol. Best advice I can give is to ask alllll the questions you want!! Our minds tend to wander and wonder so do not be afraid to ask them anything and everything. The good thing is that what they found are still small and thank God they even found them. You will be ok! You are young and healthy. Wishing you all the best. Stay positive and keep laughing (we named my tumor and he seems to be the punchline to most jokes now). LOL.
Annissa - thank you for taking the time to leave a comment. I appreciate it. I'm a very dry humored guy and plan to use that humor to help get me through. This will make me stronger. I am freaked mostly because there is a tumor on each kidney, but plan to obtain the best care possible and learn everything that I can. I just want the damn things out but understand that it's not that simple.
I wish you much success with your surgery...you're going to do great! All the best - please keep in touch!
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Hi Donna - greatly appreciatehardo718 said:Lucky, lucky, lucky man
First, that you listened to signals from your body. Second, your doc listened to you. Third, these buggers have been caught very early.
Sounds like you've got great docs involved, and more on the horizon. The head spinning part, yea, normal, very normal and take it from me, the spinning may continue for a bit. Vertigo & I had a relationship for a while. I'd like to say that once "Bob the Blob" was evicted my friend veritgo went with him, but I'd be a liar. It's a process, make no mistake and you will adjust to what lies ahead. Just stay on top of it all and be patient with yourself.
Best wishes & keep us posted, we're all here for you.
Donna~
Hi Donna - greatly appreciate your support, insights and optimisim...thank you for that. I'm committed to stay on top of every piece of the journey ahead! All i's will be dotted and t's will be crossed!
I will keep this group posted...so happy to have found you all!
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So sorry you have to be here
So sorry you have to be here but as everyone has said, it's a good thing they caught it so early. Thank god for your stomach ache that sent you to the doc. Seeing the best specialist is a great option and one I would definitely take, especially if both turn out to be RCC. All the very best to you!
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Thank you for the well wishesLMCRJB13 said:Annissa - thank you for
Annissa - thank you for taking the time to leave a comment. I appreciate it. I'm a very dry humored guy and plan to use that humor to help get me through. This will make me stronger. I am freaked mostly because there is a tumor on each kidney, but plan to obtain the best care possible and learn everything that I can. I just want the damn things out but understand that it's not that simple.
I wish you much success with your surgery...you're going to do great! All the best - please keep in touch!
Thank you for the well wishes. I know the waiting sucks, but things will fall into place for you quickly. My concern was that they would just leave me and forget to take care of it. Now that I have had the scans, appts and surgery booked I rarely even think about it. I guess bc I know it is being taken care of. Everything happens so fast you don't even get the chance to sort it all out. Like I said before I still don't believe all of this is real. Glad you are sharing your story and getting input from others. It helps.
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Lmc I’m in the same boat
Hi LMC I am in the same boat as you. Except I’m a tad older
I’m 41 diagnosed with RCC on both kidneys. Definitely keep a binder/book of all your appointments and scans. I started this process in may. And just had surgery in September. I am 4 weeks post op. They did my first surgery to remove the cancer on my left kidney because it was intertwined with my renal artery next surgery for my right kidney is scheduled for nov 28. Long story short I have had a biopsy but I unfortunately bled a lot so the doctor stopped but was still able to confirm RCC. After the biopsy I had lots of pain and the worst headache known to mankind (because of the foam they used to stop the bleedin) I met with 3 surgeons before I finally settled on the one I truly felt comfortable with And I absolutely love him. I also did a geneticist test since cancer runs in my family and it came back negative for the gene. Basically they told me it was environmental. I drove myself crazy researching all I can about RCC before my doctor and I finally came up with a plan. It’s difficult when you don’t have a plan of action but it sounds like you’ll get there. I document my progress. I blog (hands over eyes a tad embarrassed) but it helps document ups and downs and even some mistakes I’ve made along the way and a few humorous events. You’re more than welcome to read it if it helps. Stopcryingdummies.com
good luck to you! Please keep in touch and let us know what your plan of care will be!
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Jparra - thank you! YourJparra48 said:Lmc I’m in the same boat
Hi LMC I am in the same boat as you. Except I’m a tad older
I’m 41 diagnosed with RCC on both kidneys. Definitely keep a binder/book of all your appointments and scans. I started this process in may. And just had surgery in September. I am 4 weeks post op. They did my first surgery to remove the cancer on my left kidney because it was intertwined with my renal artery next surgery for my right kidney is scheduled for nov 28. Long story short I have had a biopsy but I unfortunately bled a lot so the doctor stopped but was still able to confirm RCC. After the biopsy I had lots of pain and the worst headache known to mankind (because of the foam they used to stop the bleedin) I met with 3 surgeons before I finally settled on the one I truly felt comfortable with And I absolutely love him. I also did a geneticist test since cancer runs in my family and it came back negative for the gene. Basically they told me it was environmental. I drove myself crazy researching all I can about RCC before my doctor and I finally came up with a plan. It’s difficult when you don’t have a plan of action but it sounds like you’ll get there. I document my progress. I blog (hands over eyes a tad embarrassed) but it helps document ups and downs and even some mistakes I’ve made along the way and a few humorous events. You’re more than welcome to read it if it helps. Stopcryingdummies.com
good luck to you! Please keep in touch and let us know what your plan of care will be!
Jparra - thank you! Your post certainly helps to ease my mind a bit as I await next steps.
Bilateral RCC seems to be far less common...so, I am relieved to read about your success thus far. Having a growth on each kidney is daunting but clearly can be managed. Right? I am hoping that when they run the genetic test/s it also comes back negative. There is some cancer in my extended family. I have been also researching like crazy and hopeful that a plan for me falls into place soon. I am staying as positive as I can during the wait and trying to keep my research to credible sites (there's a lot of negative and depressing stuff out there on the net). I will definitely read your blog - thank you for sharing the address with me.
Did you find your surgeons on your own? We're they urologic oncologists?
I wish you much luck and success for your next surgery - let us know how it goes!
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Thanks, AP! I appreciate youAPny said:So sorry you have to be here
So sorry you have to be here but as everyone has said, it's a good thing they caught it so early. Thank god for your stomach ache that sent you to the doc. Seeing the best specialist is a great option and one I would definitely take, especially if both turn out to be RCC. All the very best to you!
Thanks, AP! I appreciate you taking the time to leave a note with your well wishes. Agreed, that stomach ache is something that will have saved my life...so glad to have listened to my body!
Now I await a plan to get those damn things out!
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Actually yes I reached out toLMCRJB13 said:Jparra - thank you! Your
Jparra - thank you! Your post certainly helps to ease my mind a bit as I await next steps.
Bilateral RCC seems to be far less common...so, I am relieved to read about your success thus far. Having a growth on each kidney is daunting but clearly can be managed. Right? I am hoping that when they run the genetic test/s it also comes back negative. There is some cancer in my extended family. I have been also researching like crazy and hopeful that a plan for me falls into place soon. I am staying as positive as I can during the wait and trying to keep my research to credible sites (there's a lot of negative and depressing stuff out there on the net). I will definitely read your blog - thank you for sharing the address with me.
Did you find your surgeons on your own? We're they urologic oncologists?
I wish you much luck and success for your next surgery - let us know how it goes!
Actually yes I reached out to a few friends and then my regular urologist gave me some referrals. I “interviewed” all 3 of them before I made my final decision. Everyone had an opinion about what I should do or who I should see. I should go to a specific cancer center. I should see this doctor. I really love my doctor he is a urologic oncologis surgeon and I will admit I didn’t get the support I may havent gotten from other cancer centers. Emotionally speaking but then I found this site and it really helped just reading everyone’s story and their strength and courage and I realized that’s really all I needed to help get me through. I read and share with my husband too. That poor guy has seriously been through the ringer with me. I tried to research as much as I could too but like you I found some really depressing
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