Could we discuss recurrence's and the particular's surrounding them?

jhsu

lbinmsp said:

It's odd
but I don't feel like a wooohooo survivor or anything else. None of my doctors expected a recurrance based on the intial path report but with the first one I was surprisingly OK. I knew it was small(three very small tumors in the lower lung) and I knew they could surgically resect it. Recovery from that was a cake-walk compared to the open radical. This last one didn't really surprise me either. I'd been feeling crappy (extreme fatigue - upper abdominal pain) - but didn't have a clue that it could have gone to the pancreas. Apparently this is extremely rare (OH JOY).

After having my scans/biopsy slides sent to a couple of other places, it's been determined that it's inoperable. So - next we look at what else might work. Through it all I'm fine. I know for sure that this battle is God's and I'm just along for the ride.

I hope that anyone who reads this will take a couple of things away - first, really try to live life in the 'what is'. You may never have a recurrance (I pray for each of you)and to spend your precious life fretting about what might be is such a waste of time. Having said that, listen to your body! If something is going on that is not normal for you - or if you have some odd intermittent pain - get checked out! If you're not being followed closely (and I'm talking every six months) for the first 3 years minimum (preferably 5 years), insist on it! Had I not been followed this closely, the lung recurrance could have been missed and not found until I was serious trouble.

I also want people to know that a recurrance isn't the end! I'm now 10+ years out from the original diagnosis and, regardless of this latest speed-bump, I still feel mostly fine, am still making plans for my life and my future! As I've told my friends, none of us knows what tomorrow will bring. Car accidents, muggings, skiing accidents - whatever! Just because we have cancer (or have had cancer) doesn't mean anything. Those are just words - scary words for sure - but I have never seen a 'you will die on this date' sign on anybody.

Deal with recurrence
Surgical removal is the only way I consider to be able to effectively get rid of detectable RCC tumors as of today. It is really nasty to have to deal with it inside your pancreas, that is the least place for me to think RCC will go. Are you taking any target therapy now?

I learned from my recurrence that my RCC is a slow grower, 0.2Cm a year. I watched it very closely for a year before got it cut off from my right lung. I tried to feel it during but did not feel a thing. I think our immune system does play a key role in suppressing RCC from getting haywire. And that is what I have been working on since.

I am a long distance runner. Each time when I hit walls during a marathon run, it is so easy to stop and walk it or just call it off, I choose otherwise. At the end I pat myself on the back and smile “A good run and good job done, Jon”. A recurrence is just... another wall.

LB, I like Your picture, such a happy dog. Can I borrow it?

Jon

lbinmsp

jhsu said:

Deal with recurrence
Surgical removal is the only way I consider to be able to effectively get rid of detectable RCC tumors as of today. It is really nasty to have to deal with it inside your pancreas, that is the least place for me to think RCC will go. Are you taking any target therapy now?

I learned from my recurrence that my RCC is a slow grower, 0.2Cm a year. I watched it very closely for a year before got it cut off from my right lung. I tried to feel it during but did not feel a thing. I think our immune system does play a key role in suppressing RCC from getting haywire. And that is what I have been working on since.

I am a long distance runner. Each time when I hit walls during a marathon run, it is so easy to stop and walk it or just call it off, I choose otherwise. At the end I pat myself on the back and smile “A good run and good job done, Jon”. A recurrence is just... another wall.

LB, I like Your picture, such a happy dog. Can I borrow it?

Jon

Of course
you can borrow the dog! Looking at him always makes me smile! If you can't copy from here, send me your email and I'll send him on to you! I change 'dogs' periodically - I think their faces are far more interesting than mine.

I agree with you - surgical removal is currently the 'most definitive' way of 'curing' RCC. I am also with you on the role of your immune system. My urologist (waaay back in 2001) told me that the one thing any of us with RCC can do to help is to keep a health immune system. That includes getting enough rest, drinking enough water, try to decrease stress in our lives, and eating healthy (I made all but the last - oh well). So, bottom line is, we can each do our best, keep on keeping on, KEEP THOSE FOLLOWUP APPOINTMENTS, and just LIVE!

As for the pancreatic metastasis - all my doctors are scratching their heads (as are all the places who my info has been sent to). This is apparently one of the most rare places for a recurrance (I always wanted to be special - but REALLY!). Bottom line, it is what it is. I may have the biggest case of denial - or I'm really doing OK with all of this. I'm amazingly peaceful.

As for treatment. I'm in the process of moving back home (I'd moved out East for an 'adventure' but now decided I need friends and family closer). While I'm frittering with moving, my docs are all researching clinical trials, treatments, etc. so as soon as I'm moved, I'll be having a lovely 'family (aka - medical) reunion' with all my docs.

lbinmsp

rae_rae said:

I have not had a recurrence
I have not had a recurrence but I went through about a month being told and believing a recurrence had occurred. I must admit from the time of my surgery until that diagnosis, albeit misdiagnosed, I was sitting around, depressed, waiting for it to happen.

Sure I tried to tell everyone, including myself, that life was great and I wasn't wasting energy thinking about cancer. But it was a dark cloud hanging over me for nine months. I was afraid to get my hopes up and "live".

The day I got my diagnosis, I walked out of the doctors office and broke down like I never had in my life. But that was what "jumpstarted" me back to living life again. I had been so void of emotions for so long. I believe I was releasing a year's worth of emotions that day. While I am grateful that it wasn't cancer, I am glad I went through the experience. I learned a lot, was able to find new docs thanks to so much support here and know I will be able to handle it if it does occur. Trust me, we do read everything here. Every single experience someone goes through has significance to someone somewhere, someday. We fear the unknown. Knowledge conquers many fears. Keep posting. I want to know how people are doing. What's working. What's not. I have learned so much from others going through this- much more than the doctors could ever dream of telling.
Rae

Hi rae_rae
I can certainly understand your depression and fear over a recurrance. And I am sooo happy for you that it was NOT a recurrance. I think it's really important just to live your life for today. The 'what might happen' stuff is, to me, such a waste of energy! The only time I'd start to fret was just before my checkup. Then I'd spin-out and forget to live for a few days - get through it - and then pick up my life and keep on going.

I pray for everyone on this site - who has not had a recurrance - that they never do! And for those who have - I say God bless - and keep on living! That's one thing all of us can do for ourselves.

jhsu

lbinmsp said:

Of course
you can borrow the dog! Looking at him always makes me smile! If you can't copy from here, send me your email and I'll send him on to you! I change 'dogs' periodically - I think their faces are far more interesting than mine.

I agree with you - surgical removal is currently the 'most definitive' way of 'curing' RCC. I am also with you on the role of your immune system. My urologist (waaay back in 2001) told me that the one thing any of us with RCC can do to help is to keep a health immune system. That includes getting enough rest, drinking enough water, try to decrease stress in our lives, and eating healthy (I made all but the last - oh well). So, bottom line is, we can each do our best, keep on keeping on, KEEP THOSE FOLLOWUP APPOINTMENTS, and just LIVE!

As for the pancreatic metastasis - all my doctors are scratching their heads (as are all the places who my info has been sent to). This is apparently one of the most rare places for a recurrance (I always wanted to be special - but REALLY!). Bottom line, it is what it is. I may have the biggest case of denial - or I'm really doing OK with all of this. I'm amazingly peaceful.

As for treatment. I'm in the process of moving back home (I'd moved out East for an 'adventure' but now decided I need friends and family closer). While I'm frittering with moving, my docs are all researching clinical trials, treatments, etc. so as soon as I'm moved, I'll be having a lovely 'family (aka - medical) reunion' with all my docs.

A happy dog is a healthy dog
Let God worries about death. Let your docs worry about the operation. You just do your job of living.

Keep stress level in balance, exercise as much as I can, eat healthy and live a good life style. I weight these 4 items equally for my immune system.

Got the dog. Thanks.