New here, stage 3 RCC

Rea

Hi. I am 37 and just got my right kidney removed along with the 10cm tumor.  my doctor said they have removed everything but i am still scheduled to do ct scan 2 months after my surgery to check if there will be any growth in my body, from lungs down.

i have seen in the net that this type of cancer spreads to lungs, pancreas, liver and even the bones.  i would like to know if there is anyone out there who has the same case as mine and have been cancer free for more than 5 years.

 

thanks for your time

 

rea

Jackaroe

Hi Rea

the long timers here will respond soon, and they will be very helpful to you.  but i just wanted to say hi - i also had my right kidney, with fully encapsulated large tumor, removed last week.  i'm 51, married with a 7 year old kid, and i plan to be around for awhile yet.  

jack 

NanoSecond

Half of 5 years

Hi Rea,

I had an 11cm tumor which resulted in a radical left nephrectomy back in May 2010.  I was then deemed "cancer-free" (the proper term is "NED" = No Evidence of Disease) after that surgery.

I stayed NED for 2+ years.  But this past July mets (lytic lesions) were discovered on my sacrum (base of my spine) and left femur (thigh/hip area).

So stay vigilent with your CT scans - every 4 months is a typical interval.  But if you have any "strange pains" pay attention to them. An occasional but recurring (every 3 or 4 months lasting 7-10 days straight) pain in my hip was intially diagnosed simply as "bursitis" for almost one year before we finally discovered what was really going on...

Best wishes,

 

-NanoSecond

foxhd

Jackaroe said:

Hi Rea

the long timers here will respond soon, and they will be very helpful to you.  but i just wanted to say hi - i also had my right kidney, with fully encapsulated large tumor, removed last week.  i'm 51, married with a 7 year old kid, and i plan to be around for awhile yet.  

jack 

5 year plan

Sorry for the welcome Rea. If I read between the lines, you are asking about your prognosis. You didn't offer much about your pathology so only speculation. If you have been reading about kidney cancer on the net, almost all information is old. Living 5 years was quite a goal. Most up to date info is here and on Kidney-onc. So much progress has been made with new drugs that anything dated more than a year or even months is old news. We are making great strides to where even many advanced cases are becoming a manageable chronic disease. Becoming disease free is no longer a pipe dream. Prior to my learning about kidney cancer, I was expected to only live several months. Based on that, next month I will have been dead a year. Instead I am strong, healthy and living well. That makes 2 years since surgery and who knows how many years since my cancer developed. My doctor has told me that I am going to die. (she can't prevent that. ) But no longer from kidney cancer. Don't make the same mistake that many who visit here make. Hang around, and read, read, read all the posts. Become fluent with new treatments and available clinical trials. I couldn't count all the members who had been given little hope by their doctors but had their outlook and assertiveness reenergized from info they learned here. So, survive past 5 years? Hell yeah!

Rea

foxhd said:

5 year plan

Sorry for the welcome Rea. If I read between the lines, you are asking about your prognosis. You didn't offer much about your pathology so only speculation. If you have been reading about kidney cancer on the net, almost all information is old. Living 5 years was quite a goal. Most up to date info is here and on Kidney-onc. So much progress has been made with new drugs that anything dated more than a year or even months is old news. We are making great strides to where even many advanced cases are becoming a manageable chronic disease. Becoming disease free is no longer a pipe dream. Prior to my learning about kidney cancer, I was expected to only live several months. Based on that, next month I will have been dead a year. Instead I am strong, healthy and living well. That makes 2 years since surgery and who knows how many years since my cancer developed. My doctor has told me that I am going to die. (she can't prevent that. ) But no longer from kidney cancer. Don't make the same mistake that many who visit here make. Hang around, and read, read, read all the posts. Become fluent with new treatments and available clinical trials. I couldn't count all the members who had been given little hope by their doctors but had their outlook and assertiveness reenergized from info they learned here. So, survive past 5 years? Hell yeah!

thank you so much for your

thank you so much for your reply and i do apologize for the late reply.  recovering moving houses has halted my online access.

thanks for the encouragement, i look forward to living another 30 years of my life!

i will keep you posted for the result of my upcoming ct scan.

Rea

NanoSecond said:

Half of 5 years

Hi Rea,

I had an 11cm tumor which resulted in a radical left nephrectomy back in May 2010.  I was then deemed "cancer-free" (the proper term is "NED" = No Evidence of Disease) after that surgery.

I stayed NED for 2+ years.  But this past July mets (lytic lesions) were discovered on my sacrum (base of my spine) and left femur (thigh/hip area).

So stay vigilent with your CT scans - every 4 months is a typical interval.  But if you have any "strange pains" pay attention to them. An occasional but recurring (every 3 or 4 months lasting 7-10 days straight) pain in my hip was intially diagnosed simply as "bursitis" for almost one year before we finally discovered what was really going on...

Best wishes,

 

-NanoSecond

hi there, thanks a lot for

hi there, thanks a lot for the response and so sorry for the late reply.  i will surely keep that in mind.

i wish you full recovery on this

alice124

New Here

You've received excellent advice from some of our best here. This is a wonderful place for support, information, and compassion,  and you'll receive lots of support to help you when you feel frightened and to whoop it up at happier times. 

While I'm a caregiver and not an RCC patient, let me make one suggestion. Be sure to ask for a copy of your pathology report, scans, bloodwork, etc. I usually receive them the same day that John (husband and grade 4/stage 4 RCC patient) has these tests or scans. It's important to have them for research purposes and to make decisions down the line. By the way, John is doing great. He is currently in a clinical trial at Hopkins and responding very well. So adopt that Fox and CSN attitude and slay the dragon!

Rea

alice124 said:

New Here

You've received excellent advice from some of our best here. This is a wonderful place for support, information, and compassion,  and you'll receive lots of support to help you when you feel frightened and to whoop it up at happier times. 

While I'm a caregiver and not an RCC patient, let me make one suggestion. Be sure to ask for a copy of your pathology report, scans, bloodwork, etc. I usually receive them the same day that John (husband and grade 4/stage 4 RCC patient) has these tests or scans. It's important to have them for research purposes and to make decisions down the line. By the way, John is doing great. He is currently in a clinical trial at Hopkins and responding very well. So adopt that Fox and CSN attitude and slay the dragon!

thanks alice124

Thanks a lot Alice.  I am seeing my oncologist tomorrow to discuss all the scans i need to go through (CT and bone).

Its kinda scary and i am still absorbing the reality that i have cancer and is seeing an oncologist.

I am praying hard and trying to be positive on this situation.

I am recovering well, though for me it frustrating as it seems i am slow to recover.  I still cannot walk longer distance nor roam around the mall.  I easily get exhausted in the office and still have pain in my lesions and the area where the kidney is removed.  I am so looking forward to be back to my normal activities and to be physically active.  I hope all these are normal for a patient who is on 8th week recovery.

Thanks a lot!

Eims

Rea said:

thanks alice124

Thanks a lot Alice.  I am seeing my oncologist tomorrow to discuss all the scans i need to go through (CT and bone).

Its kinda scary and i am still absorbing the reality that i have cancer and is seeing an oncologist.

I am praying hard and trying to be positive on this situation.

I am recovering well, though for me it frustrating as it seems i am slow to recover.  I still cannot walk longer distance nor roam around the mall.  I easily get exhausted in the office and still have pain in my lesions and the area where the kidney is removed.  I am so looking forward to be back to my normal activities and to be physically active.  I hope all these are normal for a patient who is on 8th week recovery.

Thanks a lot!

Hi Rea,
It takes time to

Hi Rea,

It takes time to recover and everyone does at different speeds.  I am 10 weeks post surgery and its still hard to walk too much but hey it will get better.  I know its not easy but don't push yourself too hard too soon....listen to your body and rest when you can.  It all helps.  The people on here are wonderful and soooooo helpful and remember its good to talk.

Eims x