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Newly diagnosed

Rockspin
Posts: 77
Joined: Aug 2017

Newly diagnosed with kidney cancer after having a backache I had X-ray MRI and cat scan which found a 3.777 cm tumor on my right kidney. I'm meeting with an urologist tomorrow am quite scared. I'm hoping it is confined. Would love to hear some positive stories. I have a brand new grandbaby coming in April I'd like to be there for. Thank you

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Rockspin,

We were all scared in the begining. That was me 15 years ago with a similar size tumor. Absent the unexpected you shold be around for your grandchilld's weddindg.

 

 

 

Icemantoo

APny's picture
APny
Posts: 1988
Joined: Mar 2014

At 3.7 cm it's most likely confined. Mine was 3.4 or 3.5 can't remember. It's very scary when you first find out and your anxiety hijacks your imagination. I made my looming surgery out to be horrible and it wasn't. Didn't enjoy it and wouldn't want to do it again but the reality was nowhere near as bad as how I envisioned it. Mine was an open procedure yet I was still home the third day with an under 4 inch incision that healed very nicely and I had no issues. Most likely surgery will be the end of it for you. Find someone with extensive experience with kidney cancer and nephrectomies, especially partial ones. The size of your tumor could possibly qualify for partial, depending on location. Many say lap/robotic is the way to go but if that's not possible, the open version is not much worse in my experience. Comparing stories to mine there was no significant diff in pain and recovery.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

sorry same story just three days ago... scared is the word as I have already lost my husband. To cancer.... 

what stage and grade did they tell you

Glad to hear you are over the worse

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Stage 1 but grade 2/3. I posted in your other thread saying that most likely the surgery will be the end of it. I'm sure you're just stage 1 also. It's very scary when you first hear of it. I was a wreck but the great people on this forum helped tremendously. So sorry to hear about your husband.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Oh dear..

 you always hope for one or two

 

how are you doing now

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I'm doing fine, thank you! The grading process is weird. My oncologist explained to me that it was mostly grade 2 cells but since there was a certain number of 3 cells the pathologist went wtih the higher grade. It sounds like the grading is a bit subjective and up to the pathologist to call.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Oh I see Thank you... 

this is so tough but I will stay calm

Rockspin
Posts: 77
Joined: Aug 2017

Thank you so much for your responses. It helps - will post again when I find out about the surgery. Thank you again.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Sorry to hear about your diagnosis , but you are in right place for information. There are  a wide range of experiences that are told on this Forum on the surgery. Mine was in April and as in past posts it was bad just not as bad as I had imagined. Read as many past posts as possible and ask any questions that come up. You will be given information you need. We were all at the point you are now..just further in the journey. Positive thoughts your way for you and your family.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

My initial reaction to my physician's phone call was, I'd better write my obituary because I wasn't sure who else knew all the details. So I sat down and started to make notes... Until I realized dinner was starting to burn, so I bolted for the kitchen before the smoke alarm signaled to the neighbors I'd gotten distracted again (and before the stir fry became a burnt offering). 

My tumor was about the size of yours. Outside of having no tumor, a small tumor is the way to go. 

Better to sit down and make a list of all the fun things you're going to be doing with the grandkids. As Iceman said, most likely your family is going to be stuck with you for quite a while. In a good way, of course. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Fear is a very normal reaction.  I think if you weren't scared, we'd have some real concerns.  The good news is that you've caught it early and your prognosis is almost guaranteed to be great!  Start making plans for all the fun things you'll be doing with that grandbaby.  We've been blessed with quite a few and they are a blast.  Okay, sometimes a bit challenging to be honest, but always memory making.

Best wishes and keep us posted.

Donna~

Tesla1
Posts: 46
Joined: Mar 2017

I credit my wife who told me I was fixating on the potential negative issues that probably would not occur so I stopped reading about the things that could go wrong and focused on the things that could go right instead. I felt like I should be informed about potential problems but it was bringing me down to constantly read about them. So I figured that I would just roll with the punches that may come my way and deal with problems if and when they happened.

I found a member who's situation was close to mine who had a very positive outcome. I saved his post and re-read it many times before and after surgery. The post was: Open Partial Nephrectomy--A Message of Inspiration. If you should read it keep in mind that I do not recommend the amount of walking that he was able to so shortly after surgery. I tried to duplicate that and it may or may not have been a contributing factor that caused me to go back into the hospital for a 2 night stay. 

Also, a nice thought to have is that it could be a benign tumor, unlikely but possible. I had 3 radiologists and 2 surgeons tell me that based on the MRI and CT images,  I had a 4cm renal cell carcinoma but it turned out to be a benign oncocytoma. 

 

Rockspin
Posts: 77
Joined: Aug 2017

I was wondering for those that have had great scans years later- did you do any lifestyle changes after having your kidney out? Just wondering if there's anything I can do to keep this from happening again. I don't drink alcohol or soda always water and one coffee in the morning and have always eaten fairly healthy. Thanks for any input.

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Honestly, I didn't do anything before I was diagnosed that I had to stop. I didn't smoke, drank just socially, watched what I ate: no junk food, rarely anything fried, not much meat, no soda, very little sweets, normal weight, exercised, blah blah blah and still got cancer. I'm not saying there aren't contributing factors and that people shouldn't be health-conscious but unfortunately this horrible disease does not discriminate. So ultimately no, I didn't change anything because there really wasn't much to change.

LCWilson3006
Posts: 2
Joined: Aug 2017

Diagnosed June 23, 2017 with what the Radiologist calls a "2.2cm hypervascular mass arising from the superior pole of the left kidney, statistically, renal cell carcinoma."  So off we go to the Urologist and another round of tests.  Already had an ultrasound and CT in the ED for chest/abdomen pain.  The second set of CT tests revealed (quoting the radiologist), "There is redemonstration of a 2.2 cm arterially hyperenhancing mass within the posteromedial left upper renal pole."  And, again states a "statistically renal cell carcinoma."

Schedule for a 10:00 AM surgery for September 8th in Medford, Oregon.  Was told it will be a rebotic surgery and to expect a partial kidney removal; BUT, there was no guarentee that a full kidney removal wouldn't happen due to the location of the tumor.

Worried more about what else!  My father died from cronic kidney failure and refused to have a CT to further diagnose; so, I don't know if he had cancer (died in 2012 - he did know he had a problem for more than four years - I found out by gaining access to his medical records last week).  My grandfather died from some type of kidney disease in 1974.  And, my Great-grandfather died from a stomach carcinoma in 1942.  My grandmother on my dad's side died from some type of cancer in 2001.  Oh, my sister had breast cancer and went through treatment only to learn she has some type near her pelvis (need to find out more).  And, I've learned my aunt on my mother's side died from cirrhosis of the liver (genetic version).  My grandfather on my mother's side died from lung cancer (black lung disease). 

I also have per the radiologist a "diffuse hepatic hypoattenduation indicating steatosis" of the right upper lobe of my lung. And, a "2 to 3mm non calcified subpleural pulmonary micronodule in the caudal aspect."  With demonstrated minimal dependent atelectasis in the lower lobes of both lungs.  Not to mention another radiology note about my right kidney: "there are also simple bilateral renal cortical cysts, including a 4.3cm lesion arising from the superior interpolar region of the right kidney posteriorly."  With, "patchy areas of renal cortical scarring present bilaterally."

I feel like a train wreck and the surgery hasn't happened yet.

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Les,

 

Your suspected mass on the left kidney is small and unlikely to cause further problems. Your lung node is extremely small and common even with those having no Kidney Cancer problems. They will foolow up with a scan to  make sure it does not grow. Ask the Uro for more clarification on the right kidney issue.  We were all scared in the beginning. That was me 15n years ago.

 

Icemantoo

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Welll, Rockspin, WE are your ROCK! We'll be here for you all the way. Its good to hear from others who have been through this to know what to expect. Have you ever had any surgery before?

Keep asking questions. I did when I first came here. As a result, I was so prepared to communicate with my Urologist/surgeon. 

Mine was just over 4cm, but near blood supply so had a nephrectomy. I am doing fine 3.5 years later!!

Keep living each day, with more meaning! Expect a good recovery!!

Hugs and Hope, Jan

Jan

Rockspin
Posts: 77
Joined: Aug 2017

Thanks everyone - I'm having surgery scheduled after approval probably in 2 weeks. Part of me keeps hoping maybe it's just a oncocytoma, but logically I know that's only like 2-3%. I have had three Caesarians but no other surgeries. Thank you to all who took the time to write back. I'm trying to be positive but I just want this out of my body. 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

You'll do great in surgery and this will behind you before you know it. Just remember, after surgery, even when you feel better take it easy! Your body will need some time to heal. 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

All the best to you for surgery and recovery. You never know; someone has to be in that 2 - 3 percent. I was told there's a 5 percent chance so here's hoping that's what it is!

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Same to me just three days ago

 

how are you doing now

 

i am in a lot of pain... how about you

Rockspin
Posts: 77
Joined: Aug 2017

I haven't had my surgery yet scheduled for 9/19 as much as I want to get this out of me there is still the fear of what if and also to have the staging. I hope you're feeling better let us know.

Max57's picture
Max57
Posts: 168
Joined: Mar 2015

You going to be ok ...take it easy 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Thank you ... you are a dear man ❤️

Rockspin
Posts: 77
Joined: Aug 2017

I'm scheduled for September 19th for a full neph because of the location of the tumor on my right kidney. The reality is setting in already had my pre op so  all set. I want it over with but of course I'm scared.

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Those are very normal feelings as you head into surgery.  I was pretty scared prior to surgery.  I remember getting choked up while I was on the table just before they knocked me out.  My anesthesiologist was great and assurred me that he would be right by my side the entire time and it was his job to make sure everything went well.  He was very firm in his statement which really put me to ease.  I can't remember his name, but I'll never forget how he made me feel.  Remember, these folks are professionals and really good at their job.  Trust them.  You'll be in good hands.

Stub

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

My anaesthetist had a lot of trouble geting into my veins (and artery). The poor guy was so bothered by it that he walked outside for 5 minutes to calm down before trying again. My focus was reassuring him that I was ok, and no it didn't hurt and don't worry, I'm cool with it...

I don't remember what happened after that but he certainly made some successful punctures. He made a mess of my inner left elbow. Anyone seeing it in the following weeks probably thought I was a junkie.

My feeling before surgery was like I was stepping in to an adventure. I wasn't afraid, as such, but nervous like it was my first time at something ( school, job, etc.). But there was also a sense of anticipation. I knew the story thus far and wanted to see how it turned out.

Mine was stage T1b, grade 2, 4cm and all is well (so far, after 6 months). I turned 55 last week and I've never felt better.

And Rockspin, mine was also a radical right nephrectomy. Please keep letting us know how you are going.

Steve.

love_of_my_life
Posts: 77
Joined: Jul 2012

To the size of my wife's tumor.  She is coming up on 5 years cancer free after surgery.  Praying for you.

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