Just found kidney cancer

sierra28

Just found kidney cancer.

This is a new discussion board for me.  Last year I had Anal Cancer and all is well with that.  Went for a cat scan and they found a tumor on my kidney and inmy adrienal gland.  I don't go to the uroligist until tomorrow but I did some research o line and it looks like I might hae stage IV which does not sound very good.  I am realy afraid and was wondering i anyone else has had that stage of cancer and what they had done.  This is scaring me more that the anal cancer I went through.  Would love to hear from any one who has good thruogh this.  I understand the survival rate is not good.  I am 67 years old on July 18th and I am afraid this will be my last birthday.  Thank you Kathy

Srashedb

Welcome

Welcome, Kathy; I am caregiver to a stage 4 kidney cancer husband. Your fear is understandable but you are just beginning this.

You asked if there were other stage 4 Folks here and my suggestion is to keep reading posts here. 

You will find support, both informational and emotional.

Sarah

sierra28

Srashedb said:

Welcome

Welcome, Kathy; I am caregiver to a stage 4 kidney cancer husband. Your fear is understandable but you are just beginning this.

You asked if there were other stage 4 Folks here and my suggestion is to keep reading posts here. 

You will find support, both informational and emotional.

Sarah

Thanks

This is all so new and I know that reading web site on the computer to diagnois your cancer is not a good move.  I was just shocked when the Cat scan came back because I was having it done for my yearly check up fot anal cancer.  I guess I willl have to have a few more tests like a chest cat and mri done to know for sure how far along this cancer is.  I aM MORE AFRAID of this than the anal cancer.  I got blind sided yesterday when they found it,  Kathy  Thanks for answering

mrou50

Sierra

I have stage IV Kidney Cancer and you are right the prognosis is not always good, that being said you will probably have many birthdays left if you get an oncologist that know what he/she is doing and you participate in treatments.  There are a few really good treatments that are being used to extend life that aid in the slowing of the cancer.  My first Kidney cancer took place in my left Kidney I had two tumors in their and the kidney was removed, I thought I might be clear of cancer but a year and a half later I had six new tumors on both of my lungs.  My ONC immediatly started me on Votrient and with in few months two tumors were gone and four shrunk a great deal.  That does not mean I am cured by no means eventually the Votrient will stop working but then we just go to the next treatment probably IL2.  My ONC said it is not uncommon to extend life on cancer for several years he does not gaurentee me anytime because each body responds differently to treatment.  He said that he has seen people live as much as 5 years on treatments but again all results are different.  I am sure there are some that have made it even longer.  Be strong and live each day like it is a gift and lean on those who you look to for support and above all don't give up.

 

Mark

sierra28

mrou50 said:

Sierra

I have stage IV Kidney Cancer and you are right the prognosis is not always good, that being said you will probably have many birthdays left if you get an oncologist that know what he/she is doing and you participate in treatments.  There are a few really good treatments that are being used to extend life that aid in the slowing of the cancer.  My first Kidney cancer took place in my left Kidney I had two tumors in their and the kidney was removed, I thought I might be clear of cancer but a year and a half later I had six new tumors on both of my lungs.  My ONC immediatly started me on Votrient and with in few months two tumors were gone and four shrunk a great deal.  That does not mean I am cured by no means eventually the Votrient will stop working but then we just go to the next treatment probably IL2.  My ONC said it is not uncommon to extend life on cancer for several years he does not gaurentee me anytime because each body responds differently to treatment.  He said that he has seen people live as much as 5 years on treatments but again all results are different.  I am sure there are some that have made it even longer.  Be strong and live each day like it is a gift and lean on those who you look to for support and above all don't give up.

 

Mark

Thanks for the reply. Had

Thanks for the reply. Had your tumor spread ouside the kidney to the adrenal gland or to the artiery at the top of your kidney?  My other kidney ,liver and pancreas is clear but I guess they have to chek my lungs, heart and brain.  This is realy got me worried.  I am afraid he is going to tell me that I only have 6 months to live when I go Thrusday.

NewDay

sierra28 said:

Thanks for the reply. Had

Thanks for the reply. Had your tumor spread ouside the kidney to the adrenal gland or to the artiery at the top of your kidney?  My other kidney ,liver and pancreas is clear but I guess they have to chek my lungs, heart and brain.  This is realy got me worried.  I am afraid he is going to tell me that I only have 6 months to live when I go Thrusday.

WHOA

Nobody can tell you 100%, but I'm REAL sure you are not looking at 6 months.  I am stage IV.  I had my nephrectomy 3 years ago.  There are people who live many, many years.  Don't write yourself off yet.

danbren2

sierra28 said:

Thanks for the reply. Had

Thanks for the reply. Had your tumor spread ouside the kidney to the adrenal gland or to the artiery at the top of your kidney?  My other kidney ,liver and pancreas is clear but I guess they have to chek my lungs, heart and brain.  This is realy got me worried.  I am afraid he is going to tell me that I only have 6 months to live when I go Thrusday.

Just Be Strong!

     I started out in August of 2011 with stage 4 kidney cancer.  Had to have my right kidney removed and my adrenal gland removed.  A year and a half after that I had the bottom portion of my right lung removed, then 6 months later had a brain tumor removed, and my latest surgery was April 17, 2015 which was another brain tumor that was removed.  I have not been put on any kinds of meds for kidney cancer.  So far my best treatment has been just to cut it out and go on with life, and that is exactly what I am doing!

     This forum has been just great and the information is informative and makes you feel like we do have a chance.  Some of the people have been through so much, but just keep on going.  Everyday I pray that I will be one of those people.  All the best to you, and remember there is always someone here to lean on, take advantage, it is great!

                                          Prayers for good health,

                                           Brenda

APny

NewDay said:

WHOA

Nobody can tell you 100%, but I'm REAL sure you are not looking at 6 months.  I am stage IV.  I had my nephrectomy 3 years ago.  There are people who live many, many years.  Don't write yourself off yet.

Sierra, I'm so sorry you're

Sierra, I'm so sorry you're going through this. your fear is totally understandable but NewDay (Kathy) is right. It's possible that it's not stage 4 at all and that surgery will remove it all. I'm with her. Don't write yourself off. Take a deep breath and try not to think of the worst. 

NewDay

danbren2 said:

Just Be Strong!

     I started out in August of 2011 with stage 4 kidney cancer.  Had to have my right kidney removed and my adrenal gland removed.  A year and a half after that I had the bottom portion of my right lung removed, then 6 months later had a brain tumor removed, and my latest surgery was April 17, 2015 which was another brain tumor that was removed.  I have not been put on any kinds of meds for kidney cancer.  So far my best treatment has been just to cut it out and go on with life, and that is exactly what I am doing!

     This forum has been just great and the information is informative and makes you feel like we do have a chance.  Some of the people have been through so much, but just keep on going.  Everyday I pray that I will be one of those people.  All the best to you, and remember there is always someone here to lean on, take advantage, it is great!

                                          Prayers for good health,

                                           Brenda

I was wrong about stage

I apologize.  I was wrong about it being stage III.  I forgot that I had gotten that from a UK website and they stage differently.  Unfortunately, if it is in the adrenal gland, it is Stage IV.  But, there are people who live many years.  Although it is not curable, there are 8 FDA approved drugs that can slow it down and new therapies are in clinical trials and will probably be approved next year.

Kathy

NewDay

sierra28 said:

Thanks

This is all so new and I know that reading web site on the computer to diagnois your cancer is not a good move.  I was just shocked when the Cat scan came back because I was having it done for my yearly check up fot anal cancer.  I guess I willl have to have a few more tests like a chest cat and mri done to know for sure how far along this cancer is.  I aM MORE AFRAID of this than the anal cancer.  I got blind sided yesterday when they found it,  Kathy  Thanks for answering

I understand

From one Kathy to another:

First of all, ignore survival statistics you find online.  They are based on old data and there have been great strides in treatment in the last several years.  You cannot make any judgements about prognosis until you have more informatioin.  Some of that information, you will not have until you have a pathology report whch you will get after surgery.  If you are told that you need surgery, please make sure that you find a urologist that is VERY experienced with kidney cancer and please get at least 2 opinions.

Right now:

1.  Take a breath

2.  Stay away from googling statistics (If you do, remember that they are based on old data)

3.  Take a breath.

4.  Find a urologist very experienced with kidney cancer and make an appointment.

5.  Take a breath.

6.  Get a copy of your CT scan reports

7.  Take a breath.

8.  Let us know what the CT scan report says.  We can help your more if we know this.

9.  Take a breath.

10.  Make a list of questions for the urologist.  We can help you with this. 

11.  Take a breath.

I'm sure that others here will think of important steps I missed.  Keep posting here as often as you like, whether it is venting, fear, or questions.  I'm sure I will thnk of other things and will post when I thnk of them.  Continue to come here for support.  The people on ths board brought be back from the cliff when I needed them.  I'm afraid you just boarded a roller coaster but we are here for you.

Take care (and take a breath),

Kathy G

 

 

NewDay

NewDay said:

I was wrong about stage

I apologize.  I was wrong about it being stage III.  I forgot that I had gotten that from a UK website and they stage differently.  Unfortunately, if it is in the adrenal gland, it is Stage IV.  But, there are people who live many years.  Although it is not curable, there are 8 FDA approved drugs that can slow it down and new therapies are in clinical trials and will probably be approved next year.

Kathy

Urologist vs. Oncologist

Kathy,

As I said above, I strongly recommend making sure that your Urologist is VERY experienced in nephrectomies. However, they are experts at surgery, not at treating the cancer.  Once you have had your nephrectomy, you will want to have all of your follow up and treatment with an Oncologist.  Since you are Stage IV, it is important that you have one that is an expert in RCC because kidney cancer is not like other cancers and you want to be sure that your Oncologist is very knowledgeable of the latest treatment options and clinical trials.  Having an expert can make a big difference in your treatment plan.  I know you have a lot of questions, but the Oncologist is the one that will be able to answer all of your questions about kidney cancer rather than the Urologist.

Kathy

 

mrou50

sierra28 said:

Thanks for the reply. Had

Thanks for the reply. Had your tumor spread ouside the kidney to the adrenal gland or to the artiery at the top of your kidney?  My other kidney ,liver and pancreas is clear but I guess they have to chek my lungs, heart and brain.  This is realy got me worried.  I am afraid he is going to tell me that I only have 6 months to live when I go Thrusday.

Sierra28

You need to slow down you are worrying about things that probably have not happened.  My best advice I can give you is don't seek information on the internet. When my kidney was removed the doctor's were sure they got all the cancer.  Yes it returned but that is the thing about cancer it is unpredictable.  Most people that have kidney cancer don't have a reoccurence you caught yours early so relax and let your doctor determine your stage, not the internet.  

icemantoo

NewDay said:

I was wrong about stage

I apologize.  I was wrong about it being stage III.  I forgot that I had gotten that from a UK website and they stage differently.  Unfortunately, if it is in the adrenal gland, it is Stage IV.  But, there are people who live many years.  Although it is not curable, there are 8 FDA approved drugs that can slow it down and new therapies are in clinical trials and will probably be approved next year.

Kathy

Stage 4

Sierra,

 

While I am only a Stage 1 survivor, I have 13 years behind me and I am now 5 years older than you.

On the other hand my neighbor Faye across the street was diagnosed initially with Stage 4. They found mets to her lung and from that its source (kidney Cancer). That was 21 years ago when she was a rather young 64. Doing the math she is now 85 and may very well be around for another 10 or 15 years.

 

Hopefully your story will be like Faye's.

 

 

Icemantoo

Dutch1

You can still buy green

You can still buy green bananas.  I am another testament to that.  I am stage 4, having surgery in February 2013 to remove my right kidney, adrenal gland and a bunch of lymph nodes.  Since then, I had about a year and a half with no recurrence (on clinical trial during that time).  In October 2014 five spots showed up in my chest.  Tried Sutent and had trouble getting my doseage right.  Got doseage corrected and had radiation in February.  Two spots are gone and the three remaining ones are diminishing.  Still on Sutent.  So, rest assured that your health is threatened right now, but it isn't hopeless.  It'll be tough at times, but not impossible.  You'll be around for a while.

Dutch

Footstomper

Dutch1 said:

You can still buy green

You can still buy green bananas.  I am another testament to that.  I am stage 4, having surgery in February 2013 to remove my right kidney, adrenal gland and a bunch of lymph nodes.  Since then, I had about a year and a half with no recurrence (on clinical trial during that time).  In October 2014 five spots showed up in my chest.  Tried Sutent and had trouble getting my doseage right.  Got doseage corrected and had radiation in February.  Two spots are gone and the three remaining ones are diminishing.  Still on Sutent.  So, rest assured that your health is threatened right now, but it isn't hopeless.  It'll be tough at times, but not impossible.  You'll be around for a while.

Dutch

Fear

Youve just been diagnozed with cancer your allowed to be scared. It wont do you any good tho'. Its a lot easier to say I know but try not to be scaared. Everyday will still be filled withjust as much trouble as before. Cancer just adds a little more textureand a VERY different perspective.

I.m diagnozed stage 4 aggression class 4 may1 2013. Take one day at a time. and be aware that the fear is the worst thing that comes this disease.

Good Luck. Stay in touch

TinyLady

Kidney Cancer

Have been a kidney cancer survivor since October, 2008.  You didn't state if your cancer has affected one kidney or both.  It could be contained.  The survival rate is very, very good.  Please let me hear from you.  Ask an thing you need to ask.  I am not a doctor but can share my experience with you

TinyLady

Footstomper

sierra28 said:

Thanks for the reply. Had

Thanks for the reply. Had your tumor spread ouside the kidney to the adrenal gland or to the artiery at the top of your kidney?  My other kidney ,liver and pancreas is clear but I guess they have to chek my lungs, heart and brain.  This is realy got me worried.  I am afraid he is going to tell me that I only have 6 months to live when I go Thrusday.

Fear

1st step. I was diagnosed 1st May 2013 and I'm still going strong, Fear and its acompanyment are the overwhelming first symptoms. Ignore them they dont do you any good.

Jojo61

TinyLady said:

Kidney Cancer

Have been a kidney cancer survivor since October, 2008.  You didn't state if your cancer has affected one kidney or both.  It could be contained.  The survival rate is very, very good.  Please let me hear from you.  Ask an thing you need to ask.  I am not a doctor but can share my experience with you

TinyLady

Welcome Kathy! I can

Welcome Kathy! I can understand that you are feeling very scared - we have all been scared. But as others have stated here, it could be a very positive outcome!

I am glad you have found this forum - it is full of wonderful people, great advice and lots of knowledge - and, unfortunately, experience.

Take care of yourself and try not to worry too much.

Hugs

Jojo

Jan4you

Jojo61 said:

Welcome Kathy! I can

Welcome Kathy! I can understand that you are feeling very scared - we have all been scared. But as others have stated here, it could be a very positive outcome!

I am glad you have found this forum - it is full of wonderful people, great advice and lots of knowledge - and, unfortunately, experience.

Take care of yourself and try not to worry too much.

Hugs

Jojo

Well, Kathy one thing you are

Well, Kathy one thing you are doing great is seeking advice and preparing yourself to work with your urologist. You may want to consider seeking another MD to seek their advice and prognosis as well. I am glad you found us. There is also SmartPatients.com to consider as well.

Now if you are like me, AND already had cancer (sorry), I would always do my own research and ask questions being more informed. Because of THIS site, I got to my Urology appt totally prepared and calm, honest!

But keep in mind, that worrying about the "what ifs" will only use up much needed energy you need to LIVE!

Ask yourself, what do you gain by worrying? I use the Serenity prayer: (GOD) Grant me the serenity to accept the things I cannot chnge, the courage to change the things I can, and the wisdom to know the difference.

I am sending you healing thoughts so peace and calmness surrounds you. Trust your doctors.

My only advice is to ask if they do Robotic, laproscopic surgery. It is much easier to recover. But sometimes they HAVE to do an OPEN incision if necessary. I also used a lumbar wrap to support my abdominal muscles, etc. I also used dry ice inside the wrap against the incisions to reduce swelling and not need as many pain meds.

Again, I pray you are in good hands and your mind can be at ease. Stage IV seems to be very treatable and well monitored. There are many on here with Stage IV.

I can appreciate your concerns. Just know we'll walk this journey along side you if you want us to., ok?

Sending you a warm hug,

Jan