4 Weeks Post Op: Great 1st Mtg with Oncologist; Learned about a Nomogram; & Decided Against Genetic
Well, it is hard to believe how time flies. I had my radical nephrectomy of my left kidney, for stage 1 Chromophobe RCC on 10/21. I was home three weeks and then back to work. I am 39 yrs. old in Southern AZ. Prior to my nephrectomy, at the urging of many, I contacted an oncologist specializing in kidney cancer at the U of AZ Cancer Center and schedule my initial appt. for today. The purpose of my meeting was 2 fold: I wanted to find out what he knew about by ChRCC; and I also wanted to find out about Genetic testing because I may have Birt Hogg Dube (BHD) syndrome. I had read that anyone with ChRCC should be tested for BHD syndrome. He had a great bedside manner and told me about how rare my subtype of cancer was. In 20 yrs, he had only seen one other person with my subtype. He pulled up a nomogram website (and said anyone can do this at the following site: http://nomograms.mskcc.org/) and he put in my variables, and it stated I have a 0 - 2% chance of my cancer recurring!!! Of course it is not exact science and there are no guarantees, but it was pretty good news!! I was SO happy to hear that!!! He said I will be, by definition, a "cancer patient" for five years, and then after that...assuming no recurrence, I can put that title on the shelf. He said I had a valid concern about Genetic testing and referred me to a Geneticist Dr. However, he said there are many cons in having genetic testing: insurance may not pay for it; and if it does and I do have a pre-existing condition, then there could be implications with my health insurance company and my children. Also, he said my life insurance premiums would increase. Lastly, he said that knowing whether or not I do or do not have a genetic propensity for cancer, won't change the course of action for the future: regular scans every 6 months for 10 years as per my urologist. Taking all of that into consideration, I am opting to not have the genetic testing. I wanted to share my experiences today here in case there were any others out there wondering what it would be like post nephrectomy. I was SO lucky that mine was caught early, and that I have a tiny to no chance of recurrence. I feel so relieved. I know I am not 100% out of the woods, but 0 - 2% is GREAT!!!
Other updates on my recovery: Today I noticed that my stomach around my incision site is numb! I didn't get staples...had glue, and I am so happy the scabs have fallen off! I was really only weak the first 4 - 5 days, then little by little I got stronger. Since Day 14 after my Nephrectomy, I have been walking 2 plus miles on the treadmill every day. I think I have only not walked 2x in the past 2 weeks. I don't walk fast all the time anywhere from 2.5 mph to 3.5 mph depending on how good I feel, and I credit walking to feeling good! My appetite is pretty light, and I am glad about that! So that is my story and I hope it helps someone out there. Happy endings can happen! 
I will check back here from time to time to let all know how I am doing.
Comments
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As good as it gets
v,
May everything continue on a positive note. I see from your other post that you want to help me with the newbies. Just remember that the average newbie is 20 years older than you and he or she will likely have a more difficult initiation. Also many of the newbies start with a lot more baggage. This is why I have suggested to newbies who are given a choice to watch and wait to get that littke sucker out as soon as possible. You will develope your own style over a period of time.
Hold off on the real physical endurance stuff until the summer.
Icemantoo
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Feels good don't it?icemantoo said:As good as it gets
v,
May everything continue on a positive note. I see from your other post that you want to help me with the newbies. Just remember that the average newbie is 20 years older than you and he or she will likely have a more difficult initiation. Also many of the newbies start with a lot more baggage. This is why I have suggested to newbies who are given a choice to watch and wait to get that littke sucker out as soon as possible. You will develope your own style over a period of time.
Hold off on the real physical endurance stuff until the summer.
Icemantoo
You certainly look like a real estate agent in your photo. Your incision numbness may well be permanent due to severance of the superficial cutaneous nerves in the skin. After a while, you just don't notice it unless you look for it. Small price to pay. don't you think?
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doesn't get much better
V-- What a great, feel good kinda post! Thanks for sharing!
I have been on a mission for the past few months to get a referral to see an oncologist and finally, my surgeon's nurse called yesterday and said she's sending the referral to the place I requested and their office will be contacting me...YAY!!!! I'm so happy! All I want is to at least have a consultation with an oncologist to discuss the particulars of my situation and hear his/her recommendations in regards to ct's vs x-rays, during the follow-up period. And, how long my follow-up should be. You mentioned 10 years, my surgeon told me either 3 or 5 years, I can't remember which. I suspect the difference is that yours was Chromophobe whereas, mine was Clear Cell. Though I have 10 years on you, being 49 at diagnosis in May 2013, I still felt too young to have this cancer. To my surgeon, who is quite elderly, I'm young enough I shouldn't worry about recurrence...easy for him to say...I shouldn't have gotten it to begin with! He's a wonderful surgeon with good bedside manners and I feel fortunate to have had him. But, he has a way too laid back kind of style and says that surgery was my cure therefore, I don't need to see an oncologist.
I'm happy I've changed his mind and he's making the referral. He probably thinks I'm a fruit loop!!
Do you mind me asking where your incision is? Mine looks like a question mark around my belly button. If it were straight, it'd be about 4-5 inches. I've been wondering if everyone's is the same. Granted, I know partials result in much larger incisions and are on the side versus front and center, like mine. The outside of my belly is numb, has been since having an abdominal hysterectomy, 12 years ago. But, strangely enough, the inside is not numb and sometimes it itches. It is impossible to satisfy an itch when you can't feel the scratch...drives me crazy!!
Hope your recovery continues to be smooth sailing!
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Hurray!twinthings said:doesn't get much better
V-- What a great, feel good kinda post! Thanks for sharing!
I have been on a mission for the past few months to get a referral to see an oncologist and finally, my surgeon's nurse called yesterday and said she's sending the referral to the place I requested and their office will be contacting me...YAY!!!! I'm so happy! All I want is to at least have a consultation with an oncologist to discuss the particulars of my situation and hear his/her recommendations in regards to ct's vs x-rays, during the follow-up period. And, how long my follow-up should be. You mentioned 10 years, my surgeon told me either 3 or 5 years, I can't remember which. I suspect the difference is that yours was Chromophobe whereas, mine was Clear Cell. Though I have 10 years on you, being 49 at diagnosis in May 2013, I still felt too young to have this cancer. To my surgeon, who is quite elderly, I'm young enough I shouldn't worry about recurrence...easy for him to say...I shouldn't have gotten it to begin with! He's a wonderful surgeon with good bedside manners and I feel fortunate to have had him. But, he has a way too laid back kind of style and says that surgery was my cure therefore, I don't need to see an oncologist.
I'm happy I've changed his mind and he's making the referral. He probably thinks I'm a fruit loop!!
Do you mind me asking where your incision is? Mine looks like a question mark around my belly button. If it were straight, it'd be about 4-5 inches. I've been wondering if everyone's is the same. Granted, I know partials result in much larger incisions and are on the side versus front and center, like mine. The outside of my belly is numb, has been since having an abdominal hysterectomy, 12 years ago. But, strangely enough, the inside is not numb and sometimes it itches. It is impossible to satisfy an itch when you can't feel the scratch...drives me crazy!!
Hope your recovery continues to be smooth sailing!
Sindy! So happy to hear that you got a referral to an oncologist! Truthfully, I think that his ego was the issue. What does it hurt to refer you to an oncologist?
Keep us posted on what he says! I can't believe how different everyone's stories are from one another. I know that each person's case is different - but each doctor has a different take on things as well. That is why this forum is great to get the stories out - you can look for the similarities and differences and go from there.
Vfelt: so glad to hear that yours is such an optimistic outcome! And thank you for sharing!
I am still waiting waiting WAITING to have my surgery. I think it will be in a couple of weeks' time. The surgeon's secretary told me they would give me a week's notice. I swear I feel "Arnold" growing...but I am sure it is just my vivid imagination. But I must say I am also curious for my pathology report to see where I stand....and can apply all your information to my case.
Have a great day everybody!
Jojo
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waiting for???Jojo61 said:Hurray!
Sindy! So happy to hear that you got a referral to an oncologist! Truthfully, I think that his ego was the issue. What does it hurt to refer you to an oncologist?
Keep us posted on what he says! I can't believe how different everyone's stories are from one another. I know that each person's case is different - but each doctor has a different take on things as well. That is why this forum is great to get the stories out - you can look for the similarities and differences and go from there.
Vfelt: so glad to hear that yours is such an optimistic outcome! And thank you for sharing!
I am still waiting waiting WAITING to have my surgery. I think it will be in a couple of weeks' time. The surgeon's secretary told me they would give me a week's notice. I swear I feel "Arnold" growing...but I am sure it is just my vivid imagination. But I must say I am also curious for my pathology report to see where I stand....and can apply all your information to my case.
Have a great day everybody!
Jojo
Hi jojo, thanks for your kind words! Who'd of thunk I'd be HAPPY to see an oncologist?! I suppose just because I get a referral doesn't mean I'll see one right away but it means there's hope! And for that, I am thankful. And anxious!!
About you...are you waiting for the doctor's schedule to permit time for your surgery? I can not imagine having to wait many days, much less weeks!
As a favor to one of his good friends (a prominant defense attorney), my doctor squeezed my initial visit in to his very busy schedule. I thought he'd just look at my ct report from a recent ER visit and give me his opinion. He went over and above that and called the radiology dept and gently persuaded them to do a ct with contrast right then. Afterwards, he reviewed the results with me and confirmed RCC. Said it would be a bit tricky to remove due to it's unusual growth pattern and the fact that it was so close to my renal vein. He wanted to confer with his colleagues and discuss the best approach. He told me that would take time and his surgery schedule was very busy but he'd hoped it could be resolved in "just a matter of weeks". I cried so hard and told him how I had barely been able to eat in the week since I've known something was wrong and I hadn't slept much and was nauseas most of the time, I suspected, from nerves. I sounded so pathetic, he had his nurse add a spot to the end of his surgery schedule the following Wednesday. I saw him on a Thrusday, so my wait was less than one week!! Have you cried like a baby? I mean REALLY cried, like, a snot pouring, tear jerking, ugly cry? And begged? It wasn't pretty and I'm not proud, but it worked for me. I suspect the fact that my daughter and the attorney's son are domestic partners, had more to do with it than my little tantrum but, I'd rather think my tantrums do pay off! I'll try to behave myself when I see the onc
I'm pretty sure if your tumor has a name, you've had him too long! Arnold has got to go!! I hope it happens sooner than later!
Keep me posted!
Sindy
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Yeptwinthings said:waiting for???
Hi jojo, thanks for your kind words! Who'd of thunk I'd be HAPPY to see an oncologist?! I suppose just because I get a referral doesn't mean I'll see one right away but it means there's hope! And for that, I am thankful. And anxious!!
About you...are you waiting for the doctor's schedule to permit time for your surgery? I can not imagine having to wait many days, much less weeks!
As a favor to one of his good friends (a prominant defense attorney), my doctor squeezed my initial visit in to his very busy schedule. I thought he'd just look at my ct report from a recent ER visit and give me his opinion. He went over and above that and called the radiology dept and gently persuaded them to do a ct with contrast right then. Afterwards, he reviewed the results with me and confirmed RCC. Said it would be a bit tricky to remove due to it's unusual growth pattern and the fact that it was so close to my renal vein. He wanted to confer with his colleagues and discuss the best approach. He told me that would take time and his surgery schedule was very busy but he'd hoped it could be resolved in "just a matter of weeks". I cried so hard and told him how I had barely been able to eat in the week since I've known something was wrong and I hadn't slept much and was nauseas most of the time, I suspected, from nerves. I sounded so pathetic, he had his nurse add a spot to the end of his surgery schedule the following Wednesday. I saw him on a Thrusday, so my wait was less than one week!! Have you cried like a baby? I mean REALLY cried, like, a snot pouring, tear jerking, ugly cry? And begged? It wasn't pretty and I'm not proud, but it worked for me. I suspect the fact that my daughter and the attorney's son are domestic partners, had more to do with it than my little tantrum but, I'd rather think my tantrums do pay off! I'll try to behave myself when I see the onc
I'm pretty sure if your tumor has a name, you've had him too long! Arnold has got to go!! I hope it happens sooner than later!
Keep me posted!
Sindy
Yep....waiting....October 10th was the official date I was told. It is funny how I have become accustomed to Arnold. At first I was panicky, but then I see myself carrying on as normal and don't feel so panicky. The specialist said it has been in there for years, so it won't likely spread in the next month....mine is in the lower part - not near the vein, luckily. Plus he was referred to me by a urologist. He is the superstar of urologists in Ontario. That is part of the reason for the longer wait. I don't mind, knowing that he is the best....especially since Arnold has attached itself to my liver and pancreas. I want a superstar taking care of it!
So here is hoping that both of us get in to see our specialists soon!
Jojo
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thank God for superstarsJojo61 said:Yep
Yep....waiting....October 10th was the official date I was told. It is funny how I have become accustomed to Arnold. At first I was panicky, but then I see myself carrying on as normal and don't feel so panicky. The specialist said it has been in there for years, so it won't likely spread in the next month....mine is in the lower part - not near the vein, luckily. Plus he was referred to me by a urologist. He is the superstar of urologists in Ontario. That is part of the reason for the longer wait. I don't mind, knowing that he is the best....especially since Arnold has attached itself to my liver and pancreas. I want a superstar taking care of it!
So here is hoping that both of us get in to see our specialists soon!
Jojo
What do you mean he's attached himself? You have mets on your liver and pancreas? Did I miss something? It's hard to keep up with everyone and I can't possibly read everything. And, even if I could, I wouldn't remember it. Old age!
I'm glad you have full confidence in your surgeon, it's so important. And I agree, worth the wait (if not too long).
I read everything I could find on my doctor, before ever laying eyes on him. I was shocked and amazed that he is the Surgical Director of the Kidney Transplant Institute. That Institute was opened under his leadership and he has served as Director since. His credentials were many and impressive! He's performed over 2000 kidney, kidney/pancreas, kidney/liver transplants and was the first ever to perform a succesful kidney transplant on an infant under 10 lbs. I'd heard his name several times in my efforts to find a urologist. Friends and acquaintances alike would suggest him as "the best". So, you could have blown me over with a feather when my daughter called and said "mom, have you ever heard of Dr ****? ". Turns out her beau's dad is the best of friends with the good doctor! The rest is history. So, I completely understand the importance in trusting you're in the best hands. It's priceless!
I'll be anxiously awaiting good reports of a textbook procedure followed by a boring, uneventful recovery.
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sorrytwinthings said:thank God for superstars
What do you mean he's attached himself? You have mets on your liver and pancreas? Did I miss something? It's hard to keep up with everyone and I can't possibly read everything. And, even if I could, I wouldn't remember it. Old age!
I'm glad you have full confidence in your surgeon, it's so important. And I agree, worth the wait (if not too long).
I read everything I could find on my doctor, before ever laying eyes on him. I was shocked and amazed that he is the Surgical Director of the Kidney Transplant Institute. That Institute was opened under his leadership and he has served as Director since. His credentials were many and impressive! He's performed over 2000 kidney, kidney/pancreas, kidney/liver transplants and was the first ever to perform a succesful kidney transplant on an infant under 10 lbs. I'd heard his name several times in my efforts to find a urologist. Friends and acquaintances alike would suggest him as "the best". So, you could have blown me over with a feather when my daughter called and said "mom, have you ever heard of Dr ****? ". Turns out her beau's dad is the best of friends with the good doctor! The rest is history. So, I completely understand the importance in trusting you're in the best hands. It's priceless!
I'll be anxiously awaiting good reports of a textbook procedure followed by a boring, uneventful recovery.
Sorry if I made it sound like it has turned to mets. No...I think that the tumor is so big that it is pushed against the liver and pancreas. He said that he would just "peel" the tumor off the liver, but would have to be careful with the pancreas (maybe the pancreas are more fragile than the liver). Of course I have heard of a horror story or two about this - but worrying doesn't help anything. I know I am in the best hands possible....what will happen is what is planned for me.
Your surgeon sounds exactly like mine! Director of Research, professor of urology, surgical director, etc....except my kids aren't dating mutual friends of his! lol
Okay - hoping to report on a boring, uneventful recovery - well said, Sindy!
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JoJo.. you made me laugh atJojo61 said:sorry
Sorry if I made it sound like it has turned to mets. No...I think that the tumor is so big that it is pushed against the liver and pancreas. He said that he would just "peel" the tumor off the liver, but would have to be careful with the pancreas (maybe the pancreas are more fragile than the liver). Of course I have heard of a horror story or two about this - but worrying doesn't help anything. I know I am in the best hands possible....what will happen is what is planned for me.
Your surgeon sounds exactly like mine! Director of Research, professor of urology, surgical director, etc....except my kids aren't dating mutual friends of his! lol
Okay - hoping to report on a boring, uneventful recovery - well said, Sindy!
JoJo.. you made me laugh at myself..!! I had no clue what questions to ask pre-surgery.. I had not found this WEB site or all of those that had already been there.. But I knew I had the right surgeon, I checked him out, and that was enough at that time. I look at all the knowledge you have and you are so far ahead of the average Jo..! So, even if your tumor is anywhere near the size of mine was, well it must of peeled off just fine. I am now 20 months post surgery and have had no Mets in that area.. whew.!
And if your tumor is that large, well, guess you will have a nice shopping trip to buy smaller size clothes... I lost 8 inches on my belt size..!
I hope you heal up fast..! Holler at us when you are up to it...
Ron
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JojoGSRon said:JoJo.. you made me laugh at
JoJo.. you made me laugh at myself..!! I had no clue what questions to ask pre-surgery.. I had not found this WEB site or all of those that had already been there.. But I knew I had the right surgeon, I checked him out, and that was enough at that time. I look at all the knowledge you have and you are so far ahead of the average Jo..! So, even if your tumor is anywhere near the size of mine was, well it must of peeled off just fine. I am now 20 months post surgery and have had no Mets in that area.. whew.!
And if your tumor is that large, well, guess you will have a nice shopping trip to buy smaller size clothes... I lost 8 inches on my belt size..!
I hope you heal up fast..! Holler at us when you are up to it...
Ron
The well adjusted smile in your picture says it all. Strong, confident, and determined. A little surgery. So what. Our bodies are like a forsythia bush. Chop them up, over prune them and just try to kill them. They just recover and it's like nothing ever happened. You are going to do well. It just takes a while. Add it too your life's experience.
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You had me atGSRon said:JoJo.. you made me laugh at
JoJo.. you made me laugh at myself..!! I had no clue what questions to ask pre-surgery.. I had not found this WEB site or all of those that had already been there.. But I knew I had the right surgeon, I checked him out, and that was enough at that time. I look at all the knowledge you have and you are so far ahead of the average Jo..! So, even if your tumor is anywhere near the size of mine was, well it must of peeled off just fine. I am now 20 months post surgery and have had no Mets in that area.. whew.!
And if your tumor is that large, well, guess you will have a nice shopping trip to buy smaller size clothes... I lost 8 inches on my belt size..!
I hope you heal up fast..! Holler at us when you are up to it...
Ron
You had me at "buy smaller size clothes"! 8 inches off your belt size?? Wow. If there is an upside to kidney cancer, I just found it! lol
It is kind of funny that you mentioned that. Back in June, my husband mentioned that my tummy was getting larger"(said out of concern, of course). Once I got past the feeling of wanting to murder him, I looked and saw what he was talking about. My weight hadn't really changed, but my tummy seemed bigger. My surgeon asked me about it too - more to the tune of "Are you an idiot??? Didn't you think there was something up when there was such a big lump just on ONE side???"....he said it a little kinder than that, but I am giving the "reading-between-the-lines"version.
I wonder how much "Arnold" himself weighs...he is pretty big....11.3 x 9.6 x 11....something like that. We women can be a little obsessed about our weight...I remember when I got home from the hospital after I had my hysterectomy....I was so curious to see how much I would lose after just having intravenous and jello for 4 days. I went straight to the bathroom to weigh myself! I lost 3 lbs....the exact weight of my uterous. My heart sank.
So Ron, I will not only let you know how I am healing, but I will do a before-measure and an after-measure report. (I just won't tell you what the actual measurements are!) LOL. I knew that I was in love when my hubby (then boyfriend) asked me how much I weighed....and I actually told him the truth!! And his answer sealed the deal. He said "Baby, you sure don't look it." On Leap Year Day last year, I asked him to marry me. How can you NOT marry a guy like that??
Jojo
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Foxhd, I like your analogyfoxhd said:Jojo
The well adjusted smile in your picture says it all. Strong, confident, and determined. A little surgery. So what. Our bodies are like a forsythia bush. Chop them up, over prune them and just try to kill them. They just recover and it's like nothing ever happened. You are going to do well. It just takes a while. Add it too your life's experience.
Forsythia bush - chop, prune, and flourish!!
Amen!
Jojo
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Hey JoJo..! I am just a dumbJojo61 said:You had me at
You had me at "buy smaller size clothes"! 8 inches off your belt size?? Wow. If there is an upside to kidney cancer, I just found it! lol
It is kind of funny that you mentioned that. Back in June, my husband mentioned that my tummy was getting larger"(said out of concern, of course). Once I got past the feeling of wanting to murder him, I looked and saw what he was talking about. My weight hadn't really changed, but my tummy seemed bigger. My surgeon asked me about it too - more to the tune of "Are you an idiot??? Didn't you think there was something up when there was such a big lump just on ONE side???"....he said it a little kinder than that, but I am giving the "reading-between-the-lines"version.
I wonder how much "Arnold" himself weighs...he is pretty big....11.3 x 9.6 x 11....something like that. We women can be a little obsessed about our weight...I remember when I got home from the hospital after I had my hysterectomy....I was so curious to see how much I would lose after just having intravenous and jello for 4 days. I went straight to the bathroom to weigh myself! I lost 3 lbs....the exact weight of my uterous. My heart sank.
So Ron, I will not only let you know how I am healing, but I will do a before-measure and an after-measure report. (I just won't tell you what the actual measurements are!) LOL. I knew that I was in love when my hubby (then boyfriend) asked me how much I weighed....and I actually told him the truth!! And his answer sealed the deal. He said "Baby, you sure don't look it." On Leap Year Day last year, I asked him to marry me. How can you NOT marry a guy like that??
Jojo
Hey JoJo..! I am just a dumb guy.. but somehow I thought I may be on safe ground letting you know about that shopping trip..!! Now as a guy, me and my pals just thought I had the olde guy beer belly... but wait.. I was not much of a beer drinker..! And I had improved my diet several times over the years, yet the belly kept growing.. I guess that should of been a hint..!!
Sounds like your "guy" is real lucky to have you by his side..!
Ron
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