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Received news last month. Looking for input...

jrzgrl66
Posts: 21
Joined: 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's picture
icemantoo
Posts: 3210
Joined: Jan 2010

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
Posts: 21
Joined: May 2015

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.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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
Posts: 21
Joined: May 2015

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!!

jason.2835's picture
jason.2835
Posts: 336
Joined: Nov 2014

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
Posts: 21
Joined: May 2015

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. Frown   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.   

Cool

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

jrzgrl66
Posts: 21
Joined: May 2015

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  Laughing

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

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
Posts: 21
Joined: May 2015

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

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's picture
APny
Posts: 1934
Joined: Mar 2014

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.

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

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
Posts: 21
Joined: May 2015

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.  Smile

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I've never looked good in a bikini anyway

donna_lee's picture
donna_lee
Posts: 893
Joined: Feb 2009

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

 

jrzgrl66
Posts: 21
Joined: May 2015

Donna,

Thank you for your uplifting encouragement.  I do have a few ideas stuck in my head and are planning for them to work. Was advised, if all goes as planned, I will be out of hospital next day; be back at work (desk job) in about 2 weeks.

I do realize I could wake up after surgery and have plans changed but I pray every day it will be as planned. Your right on point about getting as much done at home as possible!! I know I won't be out gardening or mowing the lawn any time soon!  My husband does as much as he can but I also put a lot of work in too. 

I am so glad I found this site. I has been helpful and comforting.

 

Thank you again!

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

just love your posts          made my day lol

aamdsi
Posts: 284
Joined: Apr 2014

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's picture
Jan4you
Posts: 1317
Joined: Oct 2013

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

jrzgrl66
Posts: 21
Joined: May 2015

Thank you for the kind words. I think someone else posted they prefered open over robotic. I am scheduled for a partial, laproscopic, robotic procedure. Because of where the tumor is locate (lower lob) and stretching upwards, there is a chance I might need a full removal. They will be doing everything they can to keep as much kidney as possible.

Thanks for your positive words of encouragment. I am finding this site helpful and very informative.  Everyone here is so nice and I apprciated all taking out the time to send message and the goofing around is great too!!  Smile

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

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's picture
icemantoo
Posts: 3210
Joined: Jan 2010

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.

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

Glad you found us, Scared Nana~

Although it is a shock to find out (mostly accidently) that you have the "C" word.

But then it helps to define what exactly your fears are and gain more knowledge.

The other way to get a hold of this news is to figure out what it is that makes you uneasy or scared.

It is my suggestion to figure out what YOU are in control of and what you aren't.

Do you know the "Serenity prayer" where you ask for serenity to accept the things you cannot control, the courage to change the things I can and the wisdom to know the difference.

I even watched a video of my operation and asked lots of questions here on what to expect, what if feels like and what my prognosis could be. You never know exactly until the pathologist does their report post surgery.

I heard too that if you had to get cancer, Kidney cancer is most treatable, with surgery, with no chemo, radiation, weight loss etc. The operation is well surgery. I used my lumbar wrap and put the block of dry ice inside where my largest incision was and didn't need any pain pills or very few.

I have had worst operations in the past. I prefer the robotic, laproscopic incisions as the recovery is easier. But we all get through it.

ASk away, put out your fears and learn how to find serenity in the process.

Welcome and remember, we'll help you in any way we can to get through this time.

Warmly, Jan

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

Thank you so much for the comfort. I'm just learning how to navigate this sight. I have sooooo many questions. I'm going to try to post them On discussion board the right way

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm just a 53 year old dad. Cancer is a scary word but these days thats about the scariest thing about it.

In the beginning everything can be a bit of a blur, but you are in the hands of professionals. 

You sound, by your name, as a great family woman. Tell your family they will be your greatest support.

The person who said that partial is good because it means the tumour is probably small is right. Then you'll get the little buggers grade and I'd be willing to bet that that will be small as well.

I dont want to denigrate your emotion, we've all been scared, and it is a serious condition, but pretty much the worst thing about it is the fear it causes.

You'll find a whole bunch of people here who have been through it and are ready to support you.

Good luck

jrzgrl66
Posts: 21
Joined: May 2015

Hi Nana,

I'm right there with you! I have a grandaughter 6 and grandson 4.  They are my WORLD!!  They lived with me for almost all their lives. Now, my daughter is finally on her feet, I'm able to breath and relax, and then I received this news.

For me, working in the healthcare field has been somewhat helpful. I can always turn to my family dr (whom I work for) with any questions. He also knows 2 nurses from local hospital that used the same dr I am and they said he was great.

I have my good days (very positive) and my bad days (feeling scared). I am finding this site helpful and comforting. I hope you do too!

I will keep everyone up to date on my progress and in my prayers.

 

Ruth

aamdsi
Posts: 284
Joined: Apr 2014

I had my open partial at 53 and am a Mimi to a lively nearly 3 yr old girl.  Only hard part was not being able to carry her for a couple months.

The first month (4-8wks) or so will be rough since you HAVE to take it easy - but you will be able to take walks with them and all.  Tell the boys to brush up on their gentle snuggling techniques so they can use them while you recover.

We are all here for you!

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

My prayers are with you.  Wishing you the best of results from surgery.  My tumor was small 2.5 cm and contained.  Has a laprascopic partial neph almost 2 and 1/2 years ago.  Alll scans clear, just had scan last week.  You will do fine.  How big is your tumor?  

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