Just diagnosed and Operated on

mrou50

Hi I was diagnosed 6 and half weeks ago with RCC, I had two tumors on my kidney.  I had know idea I was sick, a month and a half before I wound up in the hospital I was urinating blood clots like crazy. A doctor told me it was probably kidney stones and that I should get a CT scan just to be sure. I did not have insurance as I am a displaced teacher.  So I put off the scan until I could get a job.  In early February I was driving down the road and I had a massive pain in my side and back. My wife took me to the hospital where I thought they were going to say I was passing a stone, but instead the Dr. said he had bad news I did not have a stone I had kidney cancer.  My reaction was shock and I said all things considered I would rather have a kidney stone.  

24 hours later I was having my kidney removed when they discovered I had not one but two tumors on my kidney.  I felt like i was rushed and had no time to process any of this I broke down three days later in the hosiptal.  To make matters worse I finally got a great job with insurance but when I called them and said I would not be able to start working for six to eight weeks they said they could not wait and withdrew their offer.  I have been so depressed, when I met with the oncologist he said I had a fourty percent chance of cancer returning, and that if it does it would probably be terminal.  I know I am supposed to keep positive but with the cancer being so new and me being out of work I have been horribly depressed part of me wonders if having my kidney removed was the right thing to do.  My wife has been fantastic through this but I still feel all alone. 

I stumbled on this site and felt like I could talk to people who know what I am going through I hope I don't sound like a pitty me or a "sad sack" I just feel like I can't share everything with my wife she has shoulderd such a great burden I don't want to make her load heavier, and quite frankly she does not understand what is going on in my head.  I appreciate any support.

 

 

Mark

icemantoo

wELCOME TO THE CLUB

Mark,

Welcome to the club which nobody asked to join. The surgery was not fun, but that is your initiation to Kidney Cancer. Obviously you joined with a little extra baggage than some having been quoted a 40% recurrance rate and having the surgery done so fast.

If you would share with the members the size of your tumors and pathology you will get some real support from members going thru what you are going thru. Without that information it is a little hard for other members to relate to your case.

 

 

Icemantoo

garym

Odds are for Vegas...

Hi Mark,

The emotional roller coaster you describe is completely normal, we've all been there and we understand.  It takes awhile for your mind to catch up after the "You have cancer and you need surgery." freight train runs you over, but you have come to the right place and we'll help get you through it.  First off what your doctor told you is old school, "IF" it comes back there is every reason to believe that one of the therapies available today will be effective in combatting it.  There are several members here with a much worse prognosis than yours that are doing great.  Read foxhd's story, he is now a year past his predicted expiration date and after having dozens of tumors is now very close to being cancer free thanks to a trial he is in, read his "What a WONDERFUL day" thread.  Texas Wedge is another member you should check out and there are many more, follow the Votrient threads for starters.  The bottom line is there are effective options available and more are in the works, many manage RCC today as a chronic, not terminal, disease.

Iceman requested a bit more information, if you are so inclined that would be helpful, we're not doctors, but we are experienced and want to help.

Keep us posted,

Gary

foxhd

garym said:

Odds are for Vegas...

Hi Mark,

The emotional roller coaster you describe is completely normal, we've all been there and we understand.  It takes awhile for your mind to catch up after the "You have cancer and you need surgery." freight train runs you over, but you have come to the right place and we'll help get you through it.  First off what your doctor told you is old school, "IF" it comes back there is every reason to believe that one of the therapies available today will be effective in combatting it.  There are several members here with a much worse prognosis than yours that are doing great.  Read foxhd's story, he is now a year past his predicted expiration date and after having dozens of tumors is now very close to being cancer free thanks to a trial he is in, read his "What a WONDERFUL day" thread.  Texas Wedge is another member you should check out and there are many more, follow the Votrient threads for starters.  The bottom line is there are effective options available and more are in the works, many manage RCC today as a chronic, not terminal, disease.

Iceman requested a bit more information, if you are so inclined that would be helpful, we're not doctors, but we are experienced and want to help.

Keep us posted,

Gary

freight train

It sure is like a freight train. So sudden and scarey. It caught me the same way. And yes we do know how you feel and what you are going through. You may be the teacher but stay around here. You've got a lot to learn. First recover from surgery. Don't push yourself. Second, there are options for treatment that your doctors probably don't know about. It is a common theme . And you will be surprised at the wealth of information regarding drugs and trials keeping many of us strong, active and healthy. Now you can't do ANYTHING about having had kidney cancer and surgery. So do not spend too much time letting it depress you. Accept it. Like no longer being a virgin. Too late now. Nothing you can do about it. (worse part is it is more like having a regrettable partner and you want to throw up.).....OK, also get used to our humor. It happens when you've been here a while. (that means we are LIVING proof of optimizing our proactiveness.) The cancer does suck and none of us want to be here. It is another of lifes personal experience. Read my posts when I signed on here and where I am now. That should give you hope. At least a laugh. Read others stories also. It will take some time to get this all in good perspective. You can do it.

mrou50

icemantoo said:

wELCOME TO THE CLUB

Mark,

Welcome to the club which nobody asked to join. The surgery was not fun, but that is your initiation to Kidney Cancer. Obviously you joined with a little extra baggage than some having been quoted a 40% recurrance rate and having the surgery done so fast.

If you would share with the members the size of your tumors and pathology you will get some real support from members going thru what you are going thru. Without that information it is a little hard for other members to relate to your case.

 

 

Icemantoo

Tumors
The first tumor was 7.5 cm, the Urologist said about the size of a tennis ball, the second tumor was 2 cm. I am not sure what Pathology is I am still learning all of this and to be honest still "freaked out" and wondering what I did to get this. I worked out five days a week running, weight lifting, and I ate fairly healthy ( I would never say perfect on this one). The reason the Oncologist said 40 percent was the fact that I had two tumors and a history of colon polyps all precancerous since I was 35. So he said that ups my chances. Still I know that I need to focus on the positive and this group seems pretty supportive and positive.

Mark

mrou50

garym said:

Odds are for Vegas...

Hi Mark,

The emotional roller coaster you describe is completely normal, we've all been there and we understand.  It takes awhile for your mind to catch up after the "You have cancer and you need surgery." freight train runs you over, but you have come to the right place and we'll help get you through it.  First off what your doctor told you is old school, "IF" it comes back there is every reason to believe that one of the therapies available today will be effective in combatting it.  There are several members here with a much worse prognosis than yours that are doing great.  Read foxhd's story, he is now a year past his predicted expiration date and after having dozens of tumors is now very close to being cancer free thanks to a trial he is in, read his "What a WONDERFUL day" thread.  Texas Wedge is another member you should check out and there are many more, follow the Votrient threads for starters.  The bottom line is there are effective options available and more are in the works, many manage RCC today as a chronic, not terminal, disease.

Iceman requested a bit more information, if you are so inclined that would be helpful, we're not doctors, but we are experienced and want to help.

Keep us posted,

Gary

Thanks

Gary thanks for the encouragement I was told by a lady who had cancer the same thing to focus on the positive and that there are a great deal of medications that are working, but I have to say it is the waiting that drives me crazy now.  Every time I get a pain or a rash, or I feel nasea I think oh God it is back and it has only been six weeks.  I have my first post CT scan and MRI in mid June and I am terrified.

 

Mark

mrou50

foxhd said:

freight train

It sure is like a freight train. So sudden and scarey. It caught me the same way. And yes we do know how you feel and what you are going through. You may be the teacher but stay around here. You've got a lot to learn. First recover from surgery. Don't push yourself. Second, there are options for treatment that your doctors probably don't know about. It is a common theme . And you will be surprised at the wealth of information regarding drugs and trials keeping many of us strong, active and healthy. Now you can't do ANYTHING about having had kidney cancer and surgery. So do not spend too much time letting it depress you. Accept it. Like no longer being a virgin. Too late now. Nothing you can do about it. (worse part is it is more like having a regrettable partner and you want to throw up.).....OK, also get used to our humor. It happens when you've been here a while. (that means we are LIVING proof of optimizing our proactiveness.) The cancer does suck and none of us want to be here. It is another of lifes personal experience. Read my posts when I signed on here and where I am now. That should give you hope. At least a laugh. Read others stories also. It will take some time to get this all in good perspective. You can do it.

Fox

I read some of your posts by the way congratulations your latest was highly encouraging, and an inspiration.  As for humor I am all about that it helps me through the dark thoughts, it drives my wife crazy when I joke with her that I need her to do something for me and I say something like come on hon I am sic and dying. You are so right about this sucking though and the worst part is I get angry and I don't even know who I am angry at.

 

Mark

garym

mrou50 said:

Tumors
The first tumor was 7.5 cm, the Urologist said about the size of a tennis ball, the second tumor was 2 cm. I am not sure what Pathology is I am still learning all of this and to be honest still "freaked out" and wondering what I did to get this. I worked out five days a week running, weight lifting, and I ate fairly healthy ( I would never say perfect on this one). The reason the Oncologist said 40 percent was the fact that I had two tumors and a history of colon polyps all precancerous since I was 35. So he said that ups my chances. Still I know that I need to focus on the positive and this group seems pretty supportive and positive.

Mark

Pathology...

Mark,

You should have received a pathology report a few days after surgery, it would state size, stage, grade and type of RCC and it should also mention "margins" which if clear means it was contained and you may never need further treatment.  If you didn't get a copy ask your doctor for one, it will help as you learn more.  "What did I do to get this?" is a pretty common question, unfortunately there is no clear answer.  RCC makes up about 3% of all cancers so its kinda rare, obesity and smoking increase risk, but many here were in good physical condition and had never smoked.  Its unlikely that you could have done anything different to avoid it.  Freaking out is normal and part of the healing process which btw takes longer mentally than physically.  Eventually you will come to terms with it and understand that it is just one of those things you will never have a solid answer for.  The fear subsides over time, but I don't believe it ever goes away completely, it just becomes a part of who you are if that makes sense.  It gets better, I promise.

Hang in there,

Gary

alice124

mrou50 said:

Fox

I read some of your posts by the way congratulations your latest was highly encouraging, and an inspiration.  As for humor I am all about that it helps me through the dark thoughts, it drives my wife crazy when I joke with her that I need her to do something for me and I say something like come on hon I am sic and dying. You are so right about this sucking though and the worst part is I get angry and I don't even know who I am angry at.

 

Mark

"sic and dying" line

That line not only works well with the spouse, but great for the bar crowd. My husband (one putt) didn't buy a drink for a year. His line, "hi, did I tell you I have kidney cancer?" As his spouse, it became embarrassing. He's now in a Nivolumab/Votrient trial (since May 2012) at Hopkins and doing great with a 51% shrinkage in tumor volume. 

I empathize with everything you are going through not only wiith the kidney diagnosis but also with the job, insurance, etc., but things happen for a reason. (A much better job may be down the road.) Stay positive and focus on getting strong and healthy. That's your priority for now! Let us  help along the way. . .

AprilandChuck

mrou50 said:

Thanks

Gary thanks for the encouragement I was told by a lady who had cancer the same thing to focus on the positive and that there are a great deal of medications that are working, but I have to say it is the waiting that drives me crazy now.  Every time I get a pain or a rash, or I feel nasea I think oh God it is back and it has only been six weeks.  I have my first post CT scan and MRI in mid June and I am terrified.

 

Mark

Doctor

Did you Doctor explain anything to you? besides to tell you.. you had a 40 percent chance of reoccur.. and that it would be fatal if that happened.. Have you seen an actual Oncologist in addition to the Urologist? Have you checked into Medicaid to help pay for your medical bills and get rid of at least some of that stress? I ask these questions because in July when we started on our much uninvited journey we had no clue about Kidney Cancer or what it entailed.. we were very fortunate to end up where we did.. with the doctors we had... a Urological Oncologist who not only was not afraid to bring another Oncologist on board but insisted on it... I will tell you what they told my Husband in July and maybe that will help you.. It is a good time to get Kidney Cancer(if any is).. 10 even 5 years ago.. there was so much less known about it...Don't let fear control your reactions.. a little education about Kidney Cancer goes along way.. we do not understand some of our reports.. some on here do so much better at that... Texas is an ecyclopedia (meant in the nicest way) but we have amazing doctors who are willing to talk to us about them anytime..they also call to see if we have questions after an appointment..And recovery from the Kidney removal takes time.. you are going to have pain that has nothing to do with a reoccur of Cancer.. and everything to do with your body trying to adjust...give it a little and relax... you did nothing to bring this on.. it happens.. no one really knows why it just does...Our orig Oncologist called this the barganing and questioning phase...it's normal.. and if you have any  concerns call your doctor.. if they don't answer them get another opinion.. it's your life you have a right to information!! And stick around here.. the knowledge base is pretty awesome and if nothing else it tells you.. YOU ARE NOT ALONE!! Enjoy spring.. don't let anything steal your Joy...Huggggssss

Texas_wedge

AprilandChuck said:

Doctor

Did you Doctor explain anything to you? besides to tell you.. you had a 40 percent chance of reoccur.. and that it would be fatal if that happened.. Have you seen an actual Oncologist in addition to the Urologist? Have you checked into Medicaid to help pay for your medical bills and get rid of at least some of that stress? I ask these questions because in July when we started on our much uninvited journey we had no clue about Kidney Cancer or what it entailed.. we were very fortunate to end up where we did.. with the doctors we had... a Urological Oncologist who not only was not afraid to bring another Oncologist on board but insisted on it... I will tell you what they told my Husband in July and maybe that will help you.. It is a good time to get Kidney Cancer(if any is).. 10 even 5 years ago.. there was so much less known about it...Don't let fear control your reactions.. a little education about Kidney Cancer goes along way.. we do not understand some of our reports.. some on here do so much better at that... Texas is an ecyclopedia (meant in the nicest way) but we have amazing doctors who are willing to talk to us about them anytime..they also call to see if we have questions after an appointment..And recovery from the Kidney removal takes time.. you are going to have pain that has nothing to do with a reoccur of Cancer.. and everything to do with your body trying to adjust...give it a little and relax... you did nothing to bring this on.. it happens.. no one really knows why it just does...Our orig Oncologist called this the barganing and questioning phase...it's normal.. and if you have any  concerns call your doctor.. if they don't answer them get another opinion.. it's your life you have a right to information!! And stick around here.. the knowledge base is pretty awesome and if nothing else it tells you.. YOU ARE NOT ALONE!! Enjoy spring.. don't let anything steal your Joy...Huggggssss

Doctor

All sound advice. 

My Wife and I have just had reassuring appointments with our GP and so I'm in a funny frame of mind (always have been, actually) so I was amused at the thought of an April saying "Enjoy spring"!   Anyway, I'm sure you both will, with the good break of the ipi/nivo trial.

mrou50

AprilandChuck said:

Doctor

Did you Doctor explain anything to you? besides to tell you.. you had a 40 percent chance of reoccur.. and that it would be fatal if that happened.. Have you seen an actual Oncologist in addition to the Urologist? Have you checked into Medicaid to help pay for your medical bills and get rid of at least some of that stress? I ask these questions because in July when we started on our much uninvited journey we had no clue about Kidney Cancer or what it entailed.. we were very fortunate to end up where we did.. with the doctors we had... a Urological Oncologist who not only was not afraid to bring another Oncologist on board but insisted on it... I will tell you what they told my Husband in July and maybe that will help you.. It is a good time to get Kidney Cancer(if any is).. 10 even 5 years ago.. there was so much less known about it...Don't let fear control your reactions.. a little education about Kidney Cancer goes along way.. we do not understand some of our reports.. some on here do so much better at that... Texas is an ecyclopedia (meant in the nicest way) but we have amazing doctors who are willing to talk to us about them anytime..they also call to see if we have questions after an appointment..And recovery from the Kidney removal takes time.. you are going to have pain that has nothing to do with a reoccur of Cancer.. and everything to do with your body trying to adjust...give it a little and relax... you did nothing to bring this on.. it happens.. no one really knows why it just does...Our orig Oncologist called this the barganing and questioning phase...it's normal.. and if you have any  concerns call your doctor.. if they don't answer them get another opinion.. it's your life you have a right to information!! And stick around here.. the knowledge base is pretty awesome and if nothing else it tells you.. YOU ARE NOT ALONE!! Enjoy spring.. don't let anything steal your Joy...Huggggssss

Thanks

It was the Oncologist that I met with he based his estimate on a scale that they have and my history.  I am learning a great deal about KC now; I agree education is the key.  My doctor did say he was available for questions if I have them, and he has a nurse who calls me once every two weeks to check on me, she had a partial nephrectomy so she knows what I am going through.  I hope your husband is doing well, you are coming up on your one year anniversary you must be excited.  

 

Thank you for your support and best wishes

 

Mark

todd121

mrou50 said:

Thanks

It was the Oncologist that I met with he based his estimate on a scale that they have and my history.  I am learning a great deal about KC now; I agree education is the key.  My doctor did say he was available for questions if I have them, and he has a nurse who calls me once every two weeks to check on me, she had a partial nephrectomy so she knows what I am going through.  I hope your husband is doing well, you are coming up on your one year anniversary you must be excited.  

 

Thank you for your support and best wishes

 

Mark

Welcome

Hi Mark. Welcome to the site. Sorry you find yourself here. I can relate. I've been quoted a similar recurrence rate. I had a 6.8cm tumor. It was Stage 3a, Grade 3. I do relate. Do some reading to learn about the stage and grade, and have a look at your pathology report, and you might get a better understanding of where you stand. I haven't heard or read anything about pre-cancerous polyps increasing the odds of RCC returning. However, the rate you were quoted does sound accurate for Stage 3 RCC, if that's what you had (I saw two RCC specialists and another regular oncologist and all quoted a similar probablity of 30-50%).

Two things to keep in mind. First, nobody can tell you what's going to happen to you. These probabilities are "averages' of what happens to hundreds of people in our shoes. Nobody can predict if it's going to happen to you or not. It's unknow.

Second, 40% probability of it recurring, means there's a 60% probability it will not. It means more than likely it won't return. Hang on to that "glass half full".

I'd add, there are things you can do to help improve your situation. I'd do some reading about cancer and nutrition. There are things you can do to help yourself be in the better part of that probability. For me, I've taken this as a call to change my life. Exercise is good. I wasn't good about nutrition before, but have been reading about it and little by little making changes in my diet. Stress reduction. People posting here have learned a lot and can give pointers to links and/or books to help you out.

Please post about your pathology report when you get it. It would be helpful for us to hear your Stage and Grade. I'd like to know what kind of specialist quoted you the 40%? Was it a medical oncologist?

Every thing you're feeling is normal for your situation. I've had the same feelings, and been told by others here that they've had the same feeling. I've started feeling a lot less scared 3-4 months after my surgery. That scares me too! Being scared can be a motivator to change. But I'm not sure it helps otherwise.

Having cancer made me realize I really want to live. It really put things in perspective for me. I'm far less worried about the small stuff.

I wish you well.

Todd

Daisy lo

hi

Hi im sorry that your going thru the emotions, i just had my open radical done March 11 to remove my 21x18x15.5cm tumor and right kidney...so I know the emotional strain. I hope this site is as helpful to you as it has been to me. Ill be praying for you and your family, I keep telling myself this journey is a test of faith and strength...with you being a teacher I know youll pass this test with flying colors.