nephrectomy & recurrence

clbattle

Last week (March 21st) I was admitted to the hospital for what my primary physician thought was appendicitis; testing showed I had a tumor in my kidney about the size of a grown man's fist. I had a nephrectomy -- my right kidney was removed, along with, presumably, all of the tumor.

My urologist who performed the surgery told me that he got all of the tumor and that no additional treatments would be necessary. I will be going in every three months for follow up tests. However, he indicated I was all but "cured."

I recognize that you can never be sure that all of the cancer was removed. However, I am confused about whether I am more or less cured. If the kidney is gone, can the cancer return anyway? If I had stage 2 renal cell carcinoma, the statistics suggest that I have about an 80-85% chance of recurrence.

This is rather new to me. What does that statistic mean? A recurrence in the other kidney? I recurrence where my old (right) kidney used to be?

I recognize that these are questions I need to ask of my doctor, which I will do, but I don't meet with him for another two weeks (still recovering from the surgery, which took place earlier this week). It would help settle my mind some if I simply understood what I was dealing with here. Any insights would be appreciated.

clbattle

Correction
Let me correct an error I wrote above -- I understand that stage 2 renal has an 80-85% 5-year survivor rate (not recurrence rate). My point, however, is that means there is, I guess, a 15-20% chance of recurrence? Do I understand that statistic correctly?

bangormom

Hi clbattle,
Sorry you had
Hi clbattle,

Sorry you had to join this club. Only time will tell if you are truly cured, don't pay attention to the stats, they are numbers based on a group and you are not a number. A recurrence can happen anywhere, the bones, brain, liver lungs, lymphnodes. Is your doctor a renalcell carcinoma speacilist? If not go to Kidney Cancer Association.org they have alot of good info and a forum with others who have the same. They can answer alot of your questions, and help you find a speacilist.

You should get a copy of your patholigy report, as there are different types of rcc, (clear cell, papillary type1 or 2, sarcomatiod, chromophob) also you need to know the furman grade that determines how agressive your type is with 1 being the least aggressive and4 being the most aggressive. Going in every three months for scans is a good idea, as if it decides to come back it will be caught early and that is always best. This cancer does not respond to chemo or radiation like other cancers, we use targeted therapy's such as Sutent, Nexavar, Torisel, and now there is a new one Afinitor. If you have clear cell, there hdl2, that is the only one that offers a cure, the chance of a cure with it is small, but still it is a chance.

Knowledge is power, and that is why I suggested the kidney cancer associations web site, there is also a listserve on ACOR for kidney cancer, both sites are very informative, with people that have and are going through this. I was dx'd in august of 08 and had my left kidney and adrenal gland and my vena cava taken care of. But I am stage 4 and my prognosis is poor, they gave me a year, and I am still here. I have it in my liver and lungs, lymphnodes, spine. I have tried 3 different drugs for this, I am allergic to 2 and one did not work, I have one more to try that was just approved last monday, Afinitor, I will go on to a clinical trial if I have to. Remember knowledge is power so arm yourself with as much info as possible, that is your best defence. If you have any questions don't hesitate to ask, I'll answer if I have to info.

Maryann

clbattle

bangormom said:

Hi clbattle,
Sorry you had
Hi clbattle,

Sorry you had to join this club. Only time will tell if you are truly cured, don't pay attention to the stats, they are numbers based on a group and you are not a number. A recurrence can happen anywhere, the bones, brain, liver lungs, lymphnodes. Is your doctor a renalcell carcinoma speacilist? If not go to Kidney Cancer Association.org they have alot of good info and a forum with others who have the same. They can answer alot of your questions, and help you find a speacilist.

You should get a copy of your patholigy report, as there are different types of rcc, (clear cell, papillary type1 or 2, sarcomatiod, chromophob) also you need to know the furman grade that determines how agressive your type is with 1 being the least aggressive and4 being the most aggressive. Going in every three months for scans is a good idea, as if it decides to come back it will be caught early and that is always best. This cancer does not respond to chemo or radiation like other cancers, we use targeted therapy's such as Sutent, Nexavar, Torisel, and now there is a new one Afinitor. If you have clear cell, there hdl2, that is the only one that offers a cure, the chance of a cure with it is small, but still it is a chance.

Knowledge is power, and that is why I suggested the kidney cancer associations web site, there is also a listserve on ACOR for kidney cancer, both sites are very informative, with people that have and are going through this. I was dx'd in august of 08 and had my left kidney and adrenal gland and my vena cava taken care of. But I am stage 4 and my prognosis is poor, they gave me a year, and I am still here. I have it in my liver and lungs, lymphnodes, spine. I have tried 3 different drugs for this, I am allergic to 2 and one did not work, I have one more to try that was just approved last monday, Afinitor, I will go on to a clinical trial if I have to. Remember knowledge is power so arm yourself with as much info as possible, that is your best defence. If you have any questions don't hesitate to ask, I'll answer if I have to info.

Maryann

Maryann,
Thanks so much for
Maryann,

Thanks so much for your thoughtful response. I will definitely check out the sites you recommend, and plan to go in to my follow-up meeting with my doctor armed with many questions. I am sorry to hear that your prognosis is difficult, but I am inspired by your attitude.

Thanks so much,
Chris

shanaladee

clbattle said:

Maryann,
Thanks so much for
Maryann,

Thanks so much for your thoughtful response. I will definitely check out the sites you recommend, and plan to go in to my follow-up meeting with my doctor armed with many questions. I am sorry to hear that your prognosis is difficult, but I am inspired by your attitude.

Thanks so much,
Chris

I survived it....
Hi Chris, in April 2004, I too was diagnosed with renal cell carcinoma in my right kidney and had a nephrectomy done . I was also told I was all but cured. I had to have follow ups every 3 months which eventually turned to every 4 months and then every 6 months and just a month ago, I was told they didn't need to see me but once a year. It has been 5 years and no cancer. 11 years ago I was diagnosed with stage 2 cervical cancer which had spread to my lymph nodes. I had to have extensive radiation.

I don't worry too much about the numbers. I have relied on check ups and monitoring. I agree with Maryann, knowledge is power. Educate yourself as much as you can.

I forgot to add that I also see a Nephrologist besides my Urologist. He has me on blood pressure meds to make sure that my blood pressure stays normal so I can keep my good kidney as long as possible.

Maryann, my thoughts and prayers go out to you.
Good luck to you both.
Dee

bangormom

shanaladee said:

I survived it....
Hi Chris, in April 2004, I too was diagnosed with renal cell carcinoma in my right kidney and had a nephrectomy done . I was also told I was all but cured. I had to have follow ups every 3 months which eventually turned to every 4 months and then every 6 months and just a month ago, I was told they didn't need to see me but once a year. It has been 5 years and no cancer. 11 years ago I was diagnosed with stage 2 cervical cancer which had spread to my lymph nodes. I had to have extensive radiation.

I don't worry too much about the numbers. I have relied on check ups and monitoring. I agree with Maryann, knowledge is power. Educate yourself as much as you can.

I forgot to add that I also see a Nephrologist besides my Urologist. He has me on blood pressure meds to make sure that my blood pressure stays normal so I can keep my good kidney as long as possible.

Maryann, my thoughts and prayers go out to you.
Good luck to you both.
Dee

Hi Dee,
Thank you for your
Hi Dee,

Thank you for your prayer's they are much needed. I think the trial I will try will be with Avastin, I have been hearing good things about it, But first Afinitor which should arrive today or tomorrow, I will most likely start that on monday, as my doctor want's to see me every other day the first week I start it due to allergies.

Wow, battling two different types of cancer has to be the roughest, you must be a very strong person. I am sorry that you have had to go through that. I will be adding you to my prayer list also.

Maryann

ddt

bangormom said:

Hi Dee,
Thank you for your
Hi Dee,

Thank you for your prayer's they are much needed. I think the trial I will try will be with Avastin, I have been hearing good things about it, But first Afinitor which should arrive today or tomorrow, I will most likely start that on monday, as my doctor want's to see me every other day the first week I start it due to allergies.

Wow, battling two different types of cancer has to be the roughest, you must be a very strong person. I am sorry that you have had to go through that. I will be adding you to my prayer list also.

Maryann

Stage IV Papillary RCC
My husband was diagnosed with PRCC in December 2008. He is stage IV. They are waiting until the next CT in May and if the disease continues to progress as it has he will start Torisel. I was just wondering what your allergic reaction to it was.

Darla

bangormom

ddt said:

Stage IV Papillary RCC
My husband was diagnosed with PRCC in December 2008. He is stage IV. They are waiting until the next CT in May and if the disease continues to progress as it has he will start Torisel. I was just wondering what your allergic reaction to it was.

Darla

Hi Darla,
My reaction to
Hi Darla,

My reaction to torisel was an anafelactic shock. (I probably spelled that wrong) I was doing fine the first few seconds but as soon as it hit my blood stream, I felt a tingling in my chest and head, from there and it wasn't long, I couldn't breath at all, no air, I turned blue, the nurse shut the iv down and injected something in the line. The paramedics were called, by the time they got the gurney in the room I was able to breath. It took awhile for the o2 level in my blood to come back up. It also messed with my blood pressure and heart rate. So the doctor said I was allergic to it. I did have the benadryl drip before the start of the torisel, that was supposed to prevent an allergic reaction, but as you can see, it didn't.

My doctor then decided we would try it the following week, so he put me on steriods, and benadryl for three days before, but that didn't help. That time the chemo nurse and doctor were sitting right in front of me, and they saw my face start to turn red and stopped it before my breath went away. After that they put me on sutent, I did that for 2 cycles but it didn't work, so being I was now out of surgery for 4 months he thought we should try the torisel again because I was a little stronger. Didn't work, I started to react again, but it wasn't as bad. We decided no more torisel.

I then went on to Nexavar, I did really well for 8 or 9 days, I thought it was working, but all the side effects hit me at once, a rash all over my body, and then I woke up the next day and couldn't walk, hand and foot syndrome, boy that hurt. I called my doctor, and he had me come in, I had a fever of 103.4 and he said I might be allergic to this also, so I went off of nexavar for 4 weeks to get over the rash and foot thing and restarted at a lower dose, but 8 hrs after taking just 200mg, I had the rash and foot thing again it was really bad, so he pulled me off of that too. So today I might start Afinitor, it was just approved by the fda on 3/31/09, it works like torisel, but is in pill form you take one a day. Needless to say I am a bit worried, I don't want to be allergic to this and be home alone. But I have to try it, he said if I can't take this, then it is pallitive care for me, as there isn't much out there that will work on Papillary, so I'll have to see if I can get into a clinical trial. Weird thing is I was never allergic to anything before and now this. I really scares me that the stuff that is supposed to extend my life I can't take.

Did your husband have his kidney removed? This is a scary beast, and I pray for everyone that has it, and I pray for a cure one day the sooner the better. How old is your husband and were are his mets? Here I go try to keep a possitive attitude, it does help, and I know how hard it is but some say it works. I'll pray for you and your husband.

Maryann

fdevlin

nephrectomy
Good morning. I am a 16-year survivor of renal-cell carcinoma. I, too, had a nephrectomy. My diagnosis was a tumor that was fully encapsulated, stage 1, with the odds of survival very good. Since there was and still is no truly effective chemo/radiation for this cancer, the nephrectomy was the only solution at the time. Of course, I worried about recurrence and was told if it did recur it would likely be in my remaining kidney or other nearby organ (lungs, liver, etc.). Thankfully, none of that has occurred. I had the same follow-up schedule as mentioned in these posts and in my 10th year cancer-free (docs don't like that other C word and prefer to use tumor-free or cancer-free), my urologist finally pronounced me "cured" and said he never wanted to see me again (hee-hee). All cancer survivors will tell you we always have that little niggling in the back of our minds that our cancer will recur or a new primary cancer will pop-up. That is human nature. But we can't live our lives in constant fear. We have been given a 2nd, sometimes, 3rd, or 4th chance to be fully-alive. I know this is a difficult time for you. I won't give you any advice - I'll bet you've had more of that than you asked for - but I will share with you my mantra for the past 16 years: "As long as I can see, I'll keep looking; as long as I can walk, I'll keep moving; and as long as I can stand, I'll keep fighting..."

Huge hugs from the Sierra Nevada Mtns of Northern CA.

corey50

fdevlin said:

nephrectomy
Good morning. I am a 16-year survivor of renal-cell carcinoma. I, too, had a nephrectomy. My diagnosis was a tumor that was fully encapsulated, stage 1, with the odds of survival very good. Since there was and still is no truly effective chemo/radiation for this cancer, the nephrectomy was the only solution at the time. Of course, I worried about recurrence and was told if it did recur it would likely be in my remaining kidney or other nearby organ (lungs, liver, etc.). Thankfully, none of that has occurred. I had the same follow-up schedule as mentioned in these posts and in my 10th year cancer-free (docs don't like that other C word and prefer to use tumor-free or cancer-free), my urologist finally pronounced me "cured" and said he never wanted to see me again (hee-hee). All cancer survivors will tell you we always have that little niggling in the back of our minds that our cancer will recur or a new primary cancer will pop-up. That is human nature. But we can't live our lives in constant fear. We have been given a 2nd, sometimes, 3rd, or 4th chance to be fully-alive. I know this is a difficult time for you. I won't give you any advice - I'll bet you've had more of that than you asked for - but I will share with you my mantra for the past 16 years: "As long as I can see, I'll keep looking; as long as I can walk, I'll keep moving; and as long as I can stand, I'll keep fighting..."

Huge hugs from the Sierra Nevada Mtns of Northern CA.

fdevlin
fdevlin.
thank you so much for your post.
it is so inspiring and affirming to hear of a 16 year survivor with no recurrence.
there are so many horror stories it was so nice to read of someone with a great outcome.
i had a nephrectomy in dec. and it was also stage 1. but it seems so odd to not have chemo or some other treatment.
but you are living proof that this can be beat. thanks for sharing your story.
do you mind if i ask, were your scans every 3 mos. or 6 mos at the beginning.
thank you again
continued good health to us all.

Doc P

Numbers are ok, but don't run your life.
"But we can't live our lives in constant fear" - I couldn't agree more fdevlin!

I am one week post-op after a left robotic partial nephrectomy via the Da Vinci. What a great device! I was given a 95% cure rate yesterday which in itself is reassuring, but not as much as my faith and looking into my 2 1/2 year old son's eyes knowing that I get to enjoy a long life with him.

Take each day for what it is, a gift, blessing, etc. I was scared to the core and second guessing myself too over the past month or so, but at some point a self induced "kick in the butt" needs to happen and you should realize that you were given a gift that unfortunately many never get.

MrCowboy74

6 years free

On 10/10/12, I just passed my 6yrs free milestone.  While my Urologist checks me every 6 months with CBC's, chest X-rays and prostate exams / CT Scans every other visit, from time to time, I wonder when I'll get the call saying, "we need you to come in for addition test."  Originally for me, it hit without warning one night when I went to the restroom and had a blood clot come out in my urine.  5 days later, I was in the hospital and surgery done the morning of the 6th day.  During the surgery, the tumor, which was supposed to be 1 - 1 1/2 inches, turned out to be the size of a large grapefruit.  Due to the loss of blood that ensued, I had to be revived.  I don't mention this because I want to scare anyone that may go through this procedure, but to offer encouragement, that regardless the odds, you can still come out on top.  I am truly a believer that when it's your time, it's your time.

 

During my post op visit, me and my Dr. discussed the surgery in detail and talked about the "time frame" in which the Cancer could possibly return.  He assured me that I would be able to see my oldest grandson graduate, which he was only 6 mo. old at the time.  He did mention that if the Cancer was to return, that it would probably happen within the first 10 years.  So far, so good.  I see some people on here that have legitimate and warranted concerns, but all I can say is,

1) make sure that you have things taken care of so you can focus clearly on getting better.

2) have faith in the ability of your Dr., if you don't, try to get another, but remember, time is precious and your Dr.'s credentials  don't have to include a great bedside manner, but most Drs. know that the more relaxed you are, the more effective they can be when it comes to treating you.  I am extremely lucky to have the Dr. I have, but again, getting you out of the "danger zone" does and must take top priority.

3) be prepared to make changes in your life for the better.  As a former drinker, I've given up alcohol.  You only have one kidney now, you better take care of it.  Cut down or cut out the caffeinated drinks also and make sure to increase the amount of water that you drink.  While I do allow myself a cup of coffee every morning, I follow it with a least 32 oz of water to help the flushing process.  Changes to your overall health will help not only in your recovery, but help fight in the return of the Cancer.  Plenty of fresh fruits and vegetables.

 

Yeah, it's a major thing to go through, but it doesn't have to be the end of you.  Most of us have people that depend on us, so when it comes to focusing on the important things, focus on them.  You've got a battle, make no mistake about it, but with faith and determination, it's a battle you can win.  FIGHT ON AND LIVE !!!!

 

 

alice124

MrCowboy74 said:

6 years free

On 10/10/12, I just passed my 6yrs free milestone.  While my Urologist checks me every 6 months with CBC's, chest X-rays and prostate exams / CT Scans every other visit, from time to time, I wonder when I'll get the call saying, "we need you to come in for addition test."  Originally for me, it hit without warning one night when I went to the restroom and had a blood clot come out in my urine.  5 days later, I was in the hospital and surgery done the morning of the 6th day.  During the surgery, the tumor, which was supposed to be 1 - 1 1/2 inches, turned out to be the size of a large grapefruit.  Due to the loss of blood that ensued, I had to be revived.  I don't mention this because I want to scare anyone that may go through this procedure, but to offer encouragement, that regardless the odds, you can still come out on top.  I am truly a believer that when it's your time, it's your time.

 

During my post op visit, me and my Dr. discussed the surgery in detail and talked about the "time frame" in which the Cancer could possibly return.  He assured me that I would be able to see my oldest grandson graduate, which he was only 6 mo. old at the time.  He did mention that if the Cancer was to return, that it would probably happen within the first 10 years.  So far, so good.  I see some people on here that have legitimate and warranted concerns, but all I can say is,

1) make sure that you have things taken care of so you can focus clearly on getting better.

2) have faith in the ability of your Dr., if you don't, try to get another, but remember, time is precious and your Dr.'s credentials  don't have to include a great bedside manner, but most Drs. know that the more relaxed you are, the more effective they can be when it comes to treating you.  I am extremely lucky to have the Dr. I have, but again, getting you out of the "danger zone" does and must take top priority.

3) be prepared to make changes in your life for the better.  As a former drinker, I've given up alcohol.  You only have one kidney now, you better take care of it.  Cut down or cut out the caffeinated drinks also and make sure to increase the amount of water that you drink.  While I do allow myself a cup of coffee every morning, I follow it with a least 32 oz of water to help the flushing process.  Changes to your overall health will help not only in your recovery, but help fight in the return of the Cancer.  Plenty of fresh fruits and vegetables.

 

Yeah, it's a major thing to go through, but it doesn't have to be the end of you.  Most of us have people that depend on us, so when it comes to focusing on the important things, focus on them.  You've got a battle, make no mistake about it, but with faith and determination, it's a battle you can win.  FIGHT ON AND LIVE !!!!

 

 

Great post

Great insight and advice (posted under a thread of one of my personal heroes, Chris Battle).

 

Thank you for sharing. Welcome.

icemantoo

alice124 said:

Great post

Great insight and advice (posted under a thread of one of my personal heroes, Chris Battle).

 

Thank you for sharing. Welcome.

Good attitude

Mr. Cowboy,

Good to hear you are at 6 years and counting. Welcome to our club. We have a lot of newbies here to help who are understandably a little scared when they hear the big C word and they need to have major surgery. You are welcome to help with them. I am at 10 and 1/2 years and Fay across the street from me is 81 and at 17 years. 

Icemantoo

Texas_wedge

icemantoo said:

Good attitude

Mr. Cowboy,

Good to hear you are at 6 years and counting. Welcome to our club. We have a lot of newbies here to help who are understandably a little scared when they hear the big C word and they need to have major surgery. You are welcome to help with them. I am at 10 and 1/2 years and Fay across the street from me is 81 and at 17 years. 

Icemantoo

Sound advice

Your fluid intake sounds a little over-cautious to me but it's certainly a much better routine than mine - a few sips of water to take my meds, supplemented by at least 10oz of tea and 40 - 50 oz. of coffee by lunch-time - must make myself a memo to keep on cutting down on the caffeine.  At least I don't drink colas!

Congratulations on virtue rewarded and on offering another encouraging example to those still facing active disease.