RE: New to group

JLOAvon51

Hi!

I'm new to the group - 63yr old female who had a left nephrectomy on July 26, 2014. My cancer was found through a chest ct scan. Had a chest xray and saw some nodules in right lung. I had some left back pain which I later learned was muscle pain - so really no symptoms to confirm kidney caner.  After ct of chest , they saw a very large mass on my left kidney. 8.5 cm? I was shocked and could not believe I felt healthy and was workig out, never knowing this was inside me . My urologist said this must come out now - wow, now I needed surgery which Ihavent had since 1960.  He alo said that the tumor was quite large and the whole kidney must come out. Had my surgery about a month after they found this and stayed in hospital for 2 days (my choice)

Next step was oncologist and more tests to confirm that cancer had not spread - mine was encapsulated, so I felt pretty good about seeing hopefully that my  cancer had not metastised. On my bone scan, 2 areas lit up. but after MRI everything was confirmed negative.

Going through some pain on and off and just frustrated that it takes so long to heal - guess I just have to be patient Looking forward to hearing from you and getting more information concering my condition

Thanks

JLO

icemantoo

Sounds like my neighbor Faye across the street.

JLO,

 

My neighbor Faye is the only other person who I know of who was diagnosed with Kidney Cancer which was initaially discovered with nodules to the lung on a chest xray. She was 64 then. She is 83 now. Based upon Faye you have at least 20 years to go.

Keep up with the scans and follow up with the nodules on the lung.

 

Not fun being told you have Kidney Cancer and then having your Kidney yanked out. Mine was 12 years ago at a then young 59.

 

Icemantoo

JLOAvon51

icemantoo said:

Sounds like my neighbor Faye across the street.

JLO,

 

My neighbor Faye is the only other person who I know of who was diagnosed with Kidney Cancer which was initaially discovered with nodules to the lung on a chest xray. She was 64 then. She is 83 now. Based upon Faye you have at least 20 years to go.

Keep up with the scans and follow up with the nodules on the lung.

 

Not fun being told you have Kidney Cancer and then having your Kidney yanked out. Mine was 12 years ago at a then young 59.

 

Icemantoo

lung nodules

Hi Iceman

Thank for the info - I am just ready to go, but then I get painand have to slow down. Basically not doing too much - how long before you could exercise and didn't have pain. That's wonderful for you 12 years! I am hoping I will be like you and your friend Faye - Thanks again!

JLO

icemantoo

JLOAvon51 said:

lung nodules

Hi Iceman

Thank for the info - I am just ready to go, but then I get painand have to slow down. Basically not doing too much - how long before you could exercise and didn't have pain. That's wonderful for you 12 years! I am hoping I will be like you and your friend Faye - Thanks again!

JLO

Exercise

JLO,

 

Exercise is a different word to different people. Some of our younger members are into long distance running and pick back up within a month or two. At 63 it is usually a bit tougher. My accomplishment was staying up for a 15 minute waterski run 11 months later. At 10 weeks you should be up and about, but no heavy exercise. Do what your body tells you that you can do. This is not a marathon. Ifyou had open surgery it may take you a tad longer.

 

Icemantoo

GSRon

icemantoo said:

Exercise

JLO,

 

Exercise is a different word to different people. Some of our younger members are into long distance running and pick back up within a month or two. At 63 it is usually a bit tougher. My accomplishment was staying up for a 15 minute waterski run 11 months later. At 10 weeks you should be up and about, but no heavy exercise. Do what your body tells you that you can do. This is not a marathon. Ifyou had open surgery it may take you a tad longer.

 

Icemantoo

Hi JLO and welcome to our

Hi JLO and welcome to our little club..  sorry you need to be here..  So, now that the surgery is over, time to move forward.  Healing time is very individual.. but if you do not let everything heal, you may end up being sorry... better safe than sorry.  You may feel fine on the outside, but the inside may not be fully healed.

Next, what does the Pathology report say..?  It will give type of Kidmey Cancer, stage and grade plus more info about your Cancer.

Next, what about those Lung spots..?  Was your CT Scan with contrast..?  What follow up are you going to do..?  It is possible that those Lung spots will go away.. but, maybe not.  You also need to find out what the size is of the largest ones.  Those large ones is what is used for tracking. Hopefully the spots are nothing.. but it is important to find out pretty fast.

Lastly, it is important that the doctor you see for follow up is the right doctor.  A general Oncologist won't do, Kidney Cancer is different than most other Cancers, so suggest you get to an Oncologist that specializes in RCC.

Good Luck.

Ron

Jojo61

GSRon said:

Hi JLO and welcome to our

Hi JLO and welcome to our little club..  sorry you need to be here..  So, now that the surgery is over, time to move forward.  Healing time is very individual.. but if you do not let everything heal, you may end up being sorry... better safe than sorry.  You may feel fine on the outside, but the inside may not be fully healed.

Next, what does the Pathology report say..?  It will give type of Kidmey Cancer, stage and grade plus more info about your Cancer.

Next, what about those Lung spots..?  Was your CT Scan with contrast..?  What follow up are you going to do..?  It is possible that those Lung spots will go away.. but, maybe not.  You also need to find out what the size is of the largest ones.  Those large ones is what is used for tracking. Hopefully the spots are nothing.. but it is important to find out pretty fast.

Lastly, it is important that the doctor you see for follow up is the right doctor.  A general Oncologist won't do, Kidney Cancer is different than most other Cancers, so suggest you get to an Oncologist that specializes in RCC.

Good Luck.

Ron

welcome

Hi JLO. ..you have come to the right place. A great source of info and support. 

Give yourself time to heal and do what feels right. 

Hugs

JOJO

 

JLOAvon51

GSRon said:

Hi JLO and welcome to our

Hi JLO and welcome to our little club..  sorry you need to be here..  So, now that the surgery is over, time to move forward.  Healing time is very individual.. but if you do not let everything heal, you may end up being sorry... better safe than sorry.  You may feel fine on the outside, but the inside may not be fully healed.

Next, what does the Pathology report say..?  It will give type of Kidmey Cancer, stage and grade plus more info about your Cancer.

Next, what about those Lung spots..?  Was your CT Scan with contrast..?  What follow up are you going to do..?  It is possible that those Lung spots will go away.. but, maybe not.  You also need to find out what the size is of the largest ones.  Those large ones is what is used for tracking. Hopefully the spots are nothing.. but it is important to find out pretty fast.

Lastly, it is important that the doctor you see for follow up is the right doctor.  A general Oncologist won't do, Kidney Cancer is different than most other Cancers, so suggest you get to an Oncologist that specializes in RCC.

Good Luck.

Ron

Thanks for comments and welcoming me!

Thanks everyone for your comments and advice. I wa a stage 2, but tumor was very large (stage 3 size). I am in Las Vegas and am seeing one of the top onologists for RC, Dr. Nicholas Vogelzang. His specialty is kidney cancer and he is managing many clinical studies and trials. He wanted me to do one, but I did not qualify because my caner had not spread - yeah!  Nodules are small and spots on bone scan were degenerative  - arthritic normal aging.  I was also told  since I have one kidney to NEVER have contrast again - too hard on the kidney left. If anyone would be interested in doing a trial study, you could check out my doctor - thanks again for advice - especially Ron

donna_lee

JLOAvon51 said:

Thanks for comments and welcoming me!

Thanks everyone for your comments and advice. I wa a stage 2, but tumor was very large (stage 3 size). I am in Las Vegas and am seeing one of the top onologists for RC, Dr. Nicholas Vogelzang. His specialty is kidney cancer and he is managing many clinical studies and trials. He wanted me to do one, but I did not qualify because my caner had not spread - yeah!  Nodules are small and spots on bone scan were degenerative  - arthritic normal aging.  I was also told  since I have one kidney to NEVER have contrast again - too hard on the kidney left. If anyone would be interested in doing a trial study, you could check out my doctor - thanks again for advice - especially Ron

Similar story, JLO

At age 64, no symptoms of kidney involvement, although the PC found hematuria on a yearly run of regular labs that year.  But my offhanded comment about another symptom caused him to order an ultrasound, which uncovered the kidney mass and the liver mass. Surgery for all of it and then some.  Click on my user name for the story.

I did develop pancreatitis at 3 weeks post surgery (related to the gall-bladder and partial liver removal.)  But I was driving and moving around slowly at 5-6 weeks.  At the 6 week date, I started going to the pool.  Walking in chest height water, flutter kicks on back and front, gentle stretching...for 15-20 minutes.  Every week, I'd increase time and intensity.  Using a 'noodle', I'd do hula-hoop like motions in the deep end, which really helped stretching the muscles and incision area.

Here I am, 8 years out.  Feeling like I spend way too much time "with cancer."  Dr and Labs, cancer support group, working on Relay for Life year round.  

The conundrm is that you don't want to have kidney cancer return, anywhere in your body; you don't want to have another surgery; but the surgery is sometimes easier than any type of medication they can offer for kidney cancer mets.  Which is what I found out in subsequent years.

Do I have any advice?  Ask a specific question and I might have an answer.  Meanwhile, just continue to heal and get better.

Donna

GSRon

JLOAvon51 said:

Thanks for comments and welcoming me!

Thanks everyone for your comments and advice. I wa a stage 2, but tumor was very large (stage 3 size). I am in Las Vegas and am seeing one of the top onologists for RC, Dr. Nicholas Vogelzang. His specialty is kidney cancer and he is managing many clinical studies and trials. He wanted me to do one, but I did not qualify because my caner had not spread - yeah!  Nodules are small and spots on bone scan were degenerative  - arthritic normal aging.  I was also told  since I have one kidney to NEVER have contrast again - too hard on the kidney left. If anyone would be interested in doing a trial study, you could check out my doctor - thanks again for advice - especially Ron

JLo, the comment to never

JLo, the comment to never have contrast due to one Kidney per se  is a bit over the top.  What do your blood tests for Creatinine and GFR say..?  If you have a good functioning Kidney, then Contrast should not be an issue.  But if your single Kidney is not up to the job, then that advice would be correct for CT Scans.  Other types of imaging use different Contrasts, and your doctor should know what is safe. So when ever it is scan time, you should be getting blood tests, this will determine what is to be done or not done.

Good Luck

Ron

dme59

GSRon said:

JLo, the comment to never

JLo, the comment to never have contrast due to one Kidney per se  is a bit over the top.  What do your blood tests for Creatinine and GFR say..?  If you have a good functioning Kidney, then Contrast should not be an issue.  But if your single Kidney is not up to the job, then that advice would be correct for CT Scans.  Other types of imaging use different Contrasts, and your doctor should know what is safe. So when ever it is scan time, you should be getting blood tests, this will determine what is to be done or not done.

Good Luck

Ron

I have had a couple of scans

I have had a couple of scans with contrast since my bout with kidney cancer. As Ron mentioned about the blood tests, my doctor has me get a blood test for BUN/Creatinine (kidney function) a couple days before the scan. I personally have had no issues with the contrast.

Good luck to you,

Dan