Received news last month. Looking for input...

jrzgrl66 · May 2015

Hi to everyone!! I am 49 years old.

I was sent for an ultrasound nov. 2013 to rule out gallbladder attack. It was ruled out. A spot was found on lower lobe right kidney but nothing of concern at that time.

In March, I woke very sick one day (thought food poisoning) with some abdominal pain. Sent for another ultrasound looking for same thing. This time the ultrasound showed the spot doubled in size, I had 2-3 upper lobe cysts and a CT was recommended for the lower lobe "complex cyst". I work for my primary care dr and he is laid back, easy going. He expressed concerned, which concerned me.

Scheduled CT and made appt with a urology oncologist since it can take a while to get appts with specialists. CT showed MRI or excisional biopsy recommended. Took CD to specialist and they scheduled me for an MRI. Had MRI and a follow up visit (I had my MRI results prior to see the dr since a copy was sent to my family dr/boss). Final outcome, malignancy can not be ruled out.

I personally have reviewed my CT and MRI images over and over. Dr is pretty sure its renal cell. He advised me it is very rare these turn out negative but it can happen. I have a lower lobe mass with what looks like tentacles stretching out towards my vena cava vein. Then, it appears to be stretching upwards towards the middle of the kidney and possibly into the vein. The is concerned that it MIGHT be in the vein.

I am currently scheduled for a parcial nephrectomy via robotic laproscopic on June 29th. They will be doing an ultrasound directly on my kidney prior to excision to see if it is invading the veins.

I was wondering if anyone here had a similar type of mass? From what I have read while doing research, if it is in the vein, this will most likely be classified as Stage III. I can't find anything on the web showing a kidney mass with tentacles outward.

These last few days, I have been feeling more discomfort from right under the rib area and around to the right, back, flank area. On a pain scale, this would be about a 3. It's not really a pain, more like a major discomfort. It seems to be more noticable when I moving around a lot. I sit behind a desk, most of the time, but I also work as a phlebotomist at a local hospital. This weekend was the first full weekend I have worked in about 4 weeks. and it has been pretty uncomfortable since.

Is this in my head or am I really feeling like this is getting bigger and becoming uncomfortable. I keep telling myself, "it just in my head. I'm going to have the surgery, go home the next day, be out of work about 2 weeks from desk job and about 4-6 weeks from hospital job." **that's the game plan** Is this an unrealistic expectation?

I decided to write this to get feedback from those that TRULY understand.

Thank you taking the time to read my story!!

icemantoo · May 2015

Welcome

Jrzgrl66.

Welcome to the club which no one in their right mind would volunteer to join. I joined 13 years ago. Not fun. And this bit about major surgery right out of thr gate Crazy. The fact that they are doing a partial and laproscopic suggests that it is a relatively small tumor. You did not give its size. Sometimes they make a game time decision to take the whole kidney and or open surgery. As far as the exact diagnosis that will come after they biopsy your tumror after surgery. Is it Cancer? Sounds like it, but depending on the size 5 or 10% of what looks like Cancer is not. As far as getting back to work you are 10 years younger than when I had my neph. Two weeks out sitting at a desk? Probanly a little early. For to six weeks out-hospital job? That may be pushing it a little optomistic.

We are all here to help you get thru this. You are going to have to wait till next year to show off that bikini or get on any roller coaster. May you have an uneventful recovery. May it be painless (if it was we would lose our credability), but let it be as easy as possible.

Icemantoo

jrzgrl66 · May 2015

icemantoo said:
Welcome
Jrzgrl66.

Welcome to the club which no one in their right mind would volunteer to join. I joined 13 years ago. Not fun. And this bit about major surgery right out of thr gate Crazy. The fact that they are doing a partial and laproscopic suggests that it is a relatively small tumor. You did not give its size. Sometimes they make a game time decision to take the whole kidney and or open surgery. As far as the exact diagnosis that will come after they biopsy your tumror after surgery. Is it Cancer? Sounds like it, but depending on the size 5 or 10% of what looks like Cancer is not. As far as getting back to work you are 10 years younger than when I had my neph. Two weeks out sitting at a desk? Probanly a little early. For to six weeks out-hospital job? That may be pushing it a little optomistic.

We are all here to help you get thru this. You are going to have to wait till next year to show off that bikini or get on any roller coaster. May you have an uneventful recovery. May it be painless (if it was we would lose our credability), but let it be as easy as possible.

Icemantoo

thank you so much for the

thank you so much for the prompt reply. The MRI has the mass around 2 cm. the CT exam is around 3 cm. the doctor feels it is larger because it is long with the extensions off the mass. he believes the radiologist is reading just the width of the mass and not the extension.

jason.2835 · May 2015

Tentacles?

JG,

Hmmm, I can't say I've ever heard of a tumor reaching out to a blood supply; from what I've read tumors make new blood supplies and generally they don't reach out like that. Most imaging that you look up on the Internet has a mass that is generally round and growing from one place. If your tumor has offshoots that seem like tentacles then to me that sounds more cystic in nature. But even most renal cysts appear as one round mass on imaging. So this is pretty new to me. You're feeling that it is getting bigger is totally natural. Generally, RCC is somewhat slow growing. As long as you're getting the surgery in the next month or two, there should not be any major changes to the primary tumor beyond a few millimeters.

As for the recovery, it depends on a number of factors. Are you having a laparoscopic or open procedure? I had a robotic lap, radical nephrectomy and I was out of work for 4 weeks. After a couple weeks I felt a lot better. So your expectations don't sound too far fetched. Just know that if they have to switch to an open procedure, you may have to double some of those figures.

- Jay

jrzgrl66 · May 2015

jason.2835 said:
Tentacles?
JG,

Hmmm, I can't say I've ever heard of a tumor reaching out to a blood supply; from what I've read tumors make new blood supplies and generally they don't reach out like that. Most imaging that you look up on the Internet has a mass that is generally round and growing from one place. If your tumor has offshoots that seem like tentacles then to me that sounds more cystic in nature. But even most renal cysts appear as one round mass on imaging. So this is pretty new to me. You're feeling that it is getting bigger is totally natural. Generally, RCC is somewhat slow growing. As long as you're getting the surgery in the next month or two, there should not be any major changes to the primary tumor beyond a few millimeters.

As for the recovery, it depends on a number of factors. Are you having a laparoscopic or open procedure? I had a robotic lap, radical nephrectomy and I was out of work for 4 weeks. After a couple weeks I felt a lot better. So your expectations don't sound too far fetched. Just know that if they have to switch to an open procedure, you may have to double some of those figures.

- Jay

invadopodia

Hi Jason,

I have been doing a lot of research on this. These cancer tentacles are known as "invadopodia". This is how the cancer seems to spread from one organ to the next.

My tumor is more long than round. I work in healthcare and have the CD's with my CT & MRI images. In addition to the main focused tumor, I have 2 large cysts that seem to contain only fluid and should be negative. I also have a small benign cyst on my left kidney. The crazy thing is, Nov. 2013 ultrasound, they found only one lower lobe 1.7cm complex cyst they felt was benign at that time. No mention of anything else. Now 16 months later, lower lobe cyst doubled in size per ultrasound and I have 2 more in the upper lobe. I'm just as sure as the dr, this will be renal cell but what type is what I'm really curious about.

I do realize that if this does turn out to be more involved than the dr thought, I might wake up with an incision from my right side to my left. I sure hope not, but if I do, I will be out of work from both jobs for a longer time period. Thank goodness my boss is also my family dr. He has been VERY understanding, and told me "DON'T RUSH COMING BACK!!"

Thank you for your input. I am finding this discussion board to be very theraputic for me.

Footstomper · May 2015

jrzgrl66 said:
invadopodia
Hi Jason,

I have been doing a lot of research on this. These cancer tentacles are known as "invadopodia". This is how the cancer seems to spread from one organ to the next.

My tumor is more long than round. I work in healthcare and have the CD's with my CT & MRI images. In addition to the main focused tumor, I have 2 large cysts that seem to contain only fluid and should be negative. I also have a small benign cyst on my left kidney. The crazy thing is, Nov. 2013 ultrasound, they found only one lower lobe 1.7cm complex cyst they felt was benign at that time. No mention of anything else. Now 16 months later, lower lobe cyst doubled in size per ultrasound and I have 2 more in the upper lobe. I'm just as sure as the dr, this will be renal cell but what type is what I'm really curious about.

I do realize that if this does turn out to be more involved than the dr thought, I might wake up with an incision from my right side to my left. I sure hope not, but if I do, I will be out of work from both jobs for a longer time period. Thank goodness my boss is also my family dr. He has been VERY understanding, and told me "DON'T RUSH COMING BACK!!"

Thank you for your input. I am finding this discussion board to be very theraputic for me.

Scars

Mine runs from navel to rib. Its quite cute ina Frankenstein kind of way.

todd121 · May 2015

jrzgrl66 said:
thank you so much for the
thank you so much for the prompt reply. The MRI has the mass around 2 cm. the CT exam is around 3 cm. the doctor feels it is larger because it is long with the extensions off the mass. he believes the radiologist is reading just the width of the mass and not the extension.

CT Scan

You don't mention if it was done with contrast? Usually they do with and without contrast to compare the two. Did you say you saw a urologic oncologist? They are the best equipped to handle surgeries of this nature.

Even if you need a full nephrectomy, they may be able to do it laprascopically. Mine was done this way. I ended up with a few 1" scars and one 6" horizontal scar on my side. See if your urologic oncologist can do robotic laproscopy. There's less bleeding and faster healing than a full open surgery.

Unfortunately, if they are thinking to do a partial and might have to convert it to a radical, they might have to do it open. It seems that's often the case. I had no chance for a partial. My tumor was in the center of my kidney and in the middle of too many veins to reach.

Todd

jrzgrl66 · May 2015

todd121 said:
CT Scan
You don't mention if it was done with contrast? Usually they do with and without contrast to compare the two. Did you say you saw a urologic oncologist? They are the best equipped to handle surgeries of this nature.

Even if you need a full nephrectomy, they may be able to do it laprascopically. Mine was done this way. I ended up with a few 1" scars and one 6" horizontal scar on my side. See if your urologic oncologist can do robotic laproscopy. There's less bleeding and faster healing than a full open surgery.

Unfortunately, if they are thinking to do a partial and might have to convert it to a radical, they might have to do it open. It seems that's often the case. I had no chance for a partial. My tumor was in the center of my kidney and in the middle of too many veins to reach.

Todd

Ct scan

Yes, they did do my CT & MRI with and without contrast on both tests. Current plan is for a robotic laproscopic partial nephrectomy. My dr is a urologist oncologist and also the Chief Urologist at the hosptial I am having it done. My boss (also my family dr) knows a couple of people that used him for a simular situation. They advise he was a great dr. Best in the area.

With that said, I trust his judgement. He did advise he is concerned there might be vein involvement. They will do an ultrasound directly on the kidney before cutting anything away to see "exactly" where the tumor starts and ends. I am glad to hear of someone that went through a similar procedure. I too hope if they have to take the whole kidney, the can continue removal via laproscopic method then.

Thank you for the info and support. Greatly Appreciated!!

jrzgrl66 · May 2015

Footstomper said:
Scars
Mine runs from navel to rib. Its quite cute ina Frankenstein kind of way.

If I end up with a large scar

If I end up with a large scar for some reason, I would consider a tattoo over it to hide it. Then maybe I could get back into a bikini again, lol.....Not..... Not at my age

Positive_Mental_Attitude · May 2015

jrzgrl66 said:
If I end up with a large scar
If I end up with a large scar for some reason, I would consider a tattoo over it to hide it. Then maybe I could get back into a bikini again, lol.....Not..... Not at my age

jrzgrl66, I'm going to take a

jrzgrl66, I'm going to take a guess that you are from New Jersey. Me too. The first urologist I went to indicated that I would likely need a radical (full) nephrectomy because my tumor was a perihilar tumor (difficult location). My tumor was only 2.9 cm. This did not sit well with me. I decided to get a second opinion, and I went to Dr. Paul Russo at Memorial Sloan Kettering. My understansting is that Dr. Russo highly prefers open surgery, and not laparascopic. He inidcated to me that doing my surgery by the open method would be the best way to preserve my entire kidney. If I recall correctly, the tumor did not invade the renal vein, but it was partially adhered to the outside wall of my renal vein. Dr. Russo removed the tumor and preserved 95% of my kidney. I am a big believer in the open surgery method and a huge believer in going to a hosptal in NYC if your insurance covers it. In my opinion, the doctors at Memorial Sloan Kettering, a teaching and research hospital have seen everything, and have more experience with complicated cases. I'm glad I found Dr. Russo and Memorial Sloan Kettering.

jrzgrl66 · May 2015

Positive_Mental_Attitude said:
jrzgrl66, I'm going to take a
jrzgrl66, I'm going to take a guess that you are from New Jersey. Me too. The first urologist I went to indicated that I would likely need a radical (full) nephrectomy because my tumor was a perihilar tumor (difficult location). My tumor was only 2.9 cm. This did not sit well with me. I decided to get a second opinion, and I went to Dr. Paul Russo at Memorial Sloan Kettering. My understansting is that Dr. Russo highly prefers open surgery, and not laparascopic. He inidcated to me that doing my surgery by the open method would be the best way to preserve my entire kidney. If I recall correctly, the tumor did not invade the renal vein, but it was partially adhered to the outside wall of my renal vein. Dr. Russo removed the tumor and preserved 95% of my kidney. I am a big believer in the open surgery method and a huge believer in going to a hosptal in NYC if your insurance covers it. In my opinion, the doctors at Memorial Sloan Kettering, a teaching and research hospital have seen everything, and have more experience with complicated cases. I'm glad I found Dr. Russo and Memorial Sloan Kettering.

Thank you for your feed back.

Thank you for your feed back. I actually live in the pocono mountains in PA but originally from new jersey. Work in new jersey since I'm so close.

Unfortunately, I have a PA blue shields HMO insurance. Great coverage just restricted network. I would like to see what he would charge for a second opinion though.

Thanks again!

Positive_Mental_Attitude · May 2015

jrzgrl66 said:
Thank you for your feed back.
Thank you for your feed back. I actually live in the pocono mountains in PA but originally from new jersey. Work in new jersey since I'm so close.

Unfortunately, I have a PA blue shields HMO insurance. Great coverage just restricted network. I would like to see what he would charge for a second opinion though.

Thanks again!

I found Dr. Russo by

I found Dr. Russo by reviewing the American Urological Association Renal Mass Guidelines, which are here:

https://www.auanet.org/education/guidelines/renal-mass.cfm .

Another doctor I considered was Robert Guy Uzzo at Fox Chase Cancer Center. He is also a member of the panel that wrote the guidelines.

I was originally told that I could go to MSKCC in NYC, got on the schedule for surgery, and 2 weeks prior to surgery Blue Cross of NJ reversed course on me and told me I had to get the surgery in NJ. I fought hard, and they allowed me to have the surgery at MSKCC in NYC. I'm glad I did. If you are in the Poconos, there are some great hospitals in the area and in Philly. I think Jason had his surgery at Thomas Jefferson. I hope your surgery goes well. Like many others here, the initial shock of discovering a tumor is scary, but I am really happy the way things turned out.

APny · May 2015

Positive_Mental_Attitude said:
I found Dr. Russo by
I found Dr. Russo by reviewing the American Urological Association Renal Mass Guidelines, which are here:

https://www.auanet.org/education/guidelines/renal-mass.cfm .

Another doctor I considered was Robert Guy Uzzo at Fox Chase Cancer Center. He is also a member of the panel that wrote the guidelines.

I was originally told that I could go to MSKCC in NYC, got on the schedule for surgery, and 2 weeks prior to surgery Blue Cross of NJ reversed course on me and told me I had to get the surgery in NJ. I fought hard, and they allowed me to have the surgery at MSKCC in NYC. I'm glad I did. If you are in the Poconos, there are some great hospitals in the area and in Philly. I think Jason had his surgery at Thomas Jefferson. I hope your surgery goes well. Like many others here, the initial shock of discovering a tumor is scary, but I am really happy the way things turned out.

I had the same surgeon at MSK

I had the same surgeon at MSK as Positive_Mental and can only echo everything he said. Check and see if your insurance would cover you for a second opinion by him. But in any case, wishing you the very best no matter where you have it done. BTW, my open partial surgery scar is under 5 inches and barely visible now a year later. Just a very thin red line.

Footstomper · May 2015

jrzgrl66 said:
If I end up with a large scar
If I end up with a large scar for some reason, I would consider a tattoo over it to hide it. Then maybe I could get back into a bikini again, lol.....Not..... Not at my age

Sadly

I've never looked good in a bikini anyway

Positive_Mental_Attitude · May 2015

APny said:
I had the same surgeon at MSK
I had the same surgeon at MSK as Positive_Mental and can only echo everything he said. Check and see if your insurance would cover you for a second opinion by him. But in any case, wishing you the very best no matter where you have it done. BTW, my open partial surgery scar is under 5 inches and barely visible now a year later. Just a very thin red line.

Well, my scar is not so

Well, my scar is not so pretty, but I never heal well and my skin marks easily. My abdomen alreadly looked like a tic tac toe board from previous surgeries, so the new scar is just a decoration for what was already there.

jrzgrl66 · May 2015

Positive_Mental_Attitude said:
Well, my scar is not so
Well, my scar is not so pretty, but I never heal well and my skin marks easily. My abdomen alreadly looked like a tic tac toe board from previous surgeries, so the new scar is just a decoration for what was already there.

I have a history of building

I have a history of building up keeloid (spelling?) which makes any of my scares think and numb. So, I'm expecting to have scars. If all goes well and I only have a few small ones, maybe I can have a "star" tattoo put on them.

donna_lee · May 2015

Footstomper said:
Sadly
I've never looked good in a bikini anyway

No Speedos for Footstomper

jz---I skimmed thru the posts. Sorry you needed to look for us. For me, it's been 9 years! And I didn't find this board until 4-5 years ago and by then I'd found answers to most questions the harder way.

No surgery is a walk in the park; but a lot of recovery can be 1/2 mental attitude and 1/2 what they have to do surgically. When they said I'd be in 5 days (total nephrectomy with mets to the liver the first time) I made up my mind that I was going home on a certain day, and I did. I had to have help walking, going to the bathroom, and getting out of the chair....but I got out of the hospital when I wanted.

The wait for surgery can be agonizing. Use the time to get mindless tasks done around your home. Get an NCR paper phone message pad-you can tear off the top copy to keep with your notes and still have a record of calls, appointments, etc. Prepare lists, Shop ahead. Pay bills ahead if you can. Make your contacts and who to call list. Solicit a group of friends to bring in meals on a schedule for you and the family (if there is). Change the sheets the day before you go to the hospital.

You won't have a 14 1/2 inch incision with 67 staples like I did, but you'll know you had surgery. And you will get through it. Of course....because we're tough!! I won't add the "old broads."

Keep on coming here. We are just a fount of advice and nonsense and a few good jokes. Good Luck.

Donna

aamdsi · May 2015

jrzgrl66 said:
invadopodia
Hi Jason,

I have been doing a lot of research on this. These cancer tentacles are known as "invadopodia". This is how the cancer seems to spread from one organ to the next.

My tumor is more long than round. I work in healthcare and have the CD's with my CT & MRI images. In addition to the main focused tumor, I have 2 large cysts that seem to contain only fluid and should be negative. I also have a small benign cyst on my left kidney. The crazy thing is, Nov. 2013 ultrasound, they found only one lower lobe 1.7cm complex cyst they felt was benign at that time. No mention of anything else. Now 16 months later, lower lobe cyst doubled in size per ultrasound and I have 2 more in the upper lobe. I'm just as sure as the dr, this will be renal cell but what type is what I'm really curious about.

I do realize that if this does turn out to be more involved than the dr thought, I might wake up with an incision from my right side to my left. I sure hope not, but if I do, I will be out of work from both jobs for a longer time period. Thank goodness my boss is also my family dr. He has been VERY understanding, and told me "DON'T RUSH COMING BACK!!"

Thank you for your input. I am finding this discussion board to be very theraputic for me.

Scar

Someone suggested that they put a zipper tattoo over their scar. 8-)

Mine is about 8" long and now a very thin red/pink line, with a small indentation lower down my side from the drain.

Swimming at the pool, I have noticed some women look at the scar then at me then away....But then I see other women and notice their scars. Or the men with scars and figure...We all have them, whether visual or otherwise. Some scars come wwith better "stories" than others, but wer are all survivors!

Wear your scar proudly! As for the bikini...wear that proudly too 8-)

Jan4you · May 2015

aamdsi said:
Scar
Someone suggested that they put a zipper tattoo over their scar. 8-)

Mine is about 8" long and now a very thin red/pink line, with a small indentation lower down my side from the drain.

Swimming at the pool, I have noticed some women look at the scar then at me then away....But then I see other women and notice their scars. Or the men with scars and figure...We all have them, whether visual or otherwise. Some scars come wwith better "stories" than others, but wer are all survivors!

Wear your scar proudly! As for the bikini...wear that proudly too 8-)

Well glad you found us and

Well glad you found us and are gaining such good support and information. It helped me alot when I was waiting for my surgery.

Now I am confused, you and your surgeon prefer OPEN vs robotic laproscopic?

I have had two laproscopic abdominal surgeries and one open. I much prefer robotic/lap. Much easier for recovery. I hardly need pain meds, but used dry ice placed inside my lumbar wrap which I wore night and day.I wore it home from the hospital. It rather held those recovering muscles, etc together while they healed up.

I ended up with radical due to where my tumor 4.2cm was inside the kidney. My only regret is I can no longer have NSAIDs and was takng a RX one for another condition.

Yes, don't rush going back to work. I could not exercise AT ALL (except for walking) for 30 days.

Stay with us, bring on all your questions and concerns. The folks here are lovely, informative and very supportive.

Sending you good healing vibes and a gentle hug,

Jan

Nana4life · May 2015

Kidney cancer

I am 54 years old and I to have recently been diagnosed with renal cancer. I have a tumor on my right kidney that turned out to be cancer. I am waiting to schedule a partial nephrectomy. I am super scared. Please I could use some positive results. I am a nana of 3 beautiful young boys and they need a healthy Nana.

Scared Nana

icemantoo · May 2015

Nana4life said:
Kidney cancer
I am 54 years old and I to have recently been diagnosed with renal cancer. I have a tumor on my right kidney that turned out to be cancer. I am waiting to schedule a partial nephrectomy. I am super scared. Please I could use some positive results. I am a nana of 3 beautiful young boys and they need a healthy Nana.

Scared Nana

Joining us early I see

Nana.

You are joining us while your tumor is small enough for a partial. If there is such a thing as good news, that is good news. Much more chance for positive vibes down the road. I expect you to be at the weddings of each of the 3 youngsters. I joined 13 years ago at a then young 59. The grandchidren now range from 13 and 1/2 to 19.

Not much good I can say about the surgery other than get it in your rear view mirror.

Icemantoo

PS Oh by the way we were all scared in the beginning when we were told we had Kidney Cancer and the first thing they wanted to do was yank out the Kidney. Being scared shall pass.

Received news last month. Looking for input...

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