Newly diagnosed

Rockspin
Rockspin Member Posts: 77

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

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Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    We were all scared

    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
    APny Member Posts: 1,995 Member
    At 3.7 cm it's most likely

    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.

  • Rockspin
    Rockspin Member Posts: 77
    edited August 2017 #4
    Thank you so much for your

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

  • Retcenturion
    Retcenturion Member Posts: 240 Member
    The wait is the worse

    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
    JerzyGrrl Member Posts: 760 Member
    My initial reaction was...

    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
    hardo718 Member Posts: 853 Member
    Welcome Rockspin

    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
    Tesla1 Member Posts: 46
    edited August 2017 #8
    I credit my wife who told me

    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
    Rockspin Member Posts: 77
    edited August 2017 #9
    Lifestyle changes

    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
    APny Member Posts: 1,995 Member
    Honestly, I didn't do

    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
    LCWilson3006 Member Posts: 2
    edited August 2017 #11
    Diagnosed and afraid

    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
    icemantoo Member Posts: 3,360 Member
    You should be fine

    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
    Jan4you Member Posts: 1,330 Member
    Welll, Rockspin, WE are your

    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
    Rockspin Member Posts: 77
    Thanks everyone - I'm having

    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. 

  • APny
    APny Member Posts: 1,995 Member
    All the best to you for

    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
    Wehavenotimeatall Member Posts: 488 Member
    Rockspin.... Snap

    Same to me just three days ago

     

    how are you doing now

     

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

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    APny said:

    At 3.7 cm it's most likely

    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.

    Apny

    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

  • Kat23502
    Kat23502 Member Posts: 179 Member
    edited August 2017 #18
    Rockspin said:

    Thanks everyone - I'm having

    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. 

    You'll do great in surgery

    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
    APny Member Posts: 1,995 Member

    Apny

    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

    Stage 1 but grade 2/3. I

    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
    Wehavenotimeatall Member Posts: 488 Member
    edited August 2017 #20
    APny said:

    Stage 1 but grade 2/3. I

    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.

    Oh dear..

    Oh dear..

     you always hope for one or two

     

    how are you doing now

  • APny
    APny Member Posts: 1,995 Member

    Oh dear..

    Oh dear..

     you always hope for one or two

     

    how are you doing now

    I'm doing fine, thank you!

    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.