Hoping for some positive vibes...and reassurance?

Jenn,

Being told at age 41 that you have Kidney Cancer and that you are having major surgey is enough to scare the sh.. out of any one. It sure scared me 11 years ago. I had never really heard of Kidney Cancer. Cancer was always something someone else had.

Well now you have to put on your big girl pants and start fighting back. Unfortunately the surgery is not fun and the recovery is just as bad, but that does not stop the members of our club from making the best hospital and recovery jokes that you have ever heard.

The good news is that at 6cm you may still be at Stage I with that 90% plus chance of a full recovery from the sugery alone. Even a less than perfect pathology now adays is addressed by some pretty remarkable drugs that have come on the market in the past few years.   Right now just concentrate on passing my age which will be 70 in about 25 hours. Fay across the street started her initial Kidney Cancer diagnosis with mets to the lung at age 64. She is doing fine now and just hit 82.

I wish I could sugar coat the surgery or recovery, but I can not. Hopefully in about 6 weeks you will be back to your normal routines. No roller coasters this summer but maybe next year as long as you don't go to Six Flags over Texas.

When I got out of the hospital my wife found a Carabbean Cruise about 6 months later and we decided to take a  survivor cruise annually. No 12 is coming up in February 2014. She also thought it would be a good idea to take me to a Band B on the Canadian side of Lake Huron to relax before the surgery. She took me to the  nicest restaurant in town which brought out all of their offerings on a cart. I was not amused by the Kidney Pie, but now I can laugh about it.

Icemantoo

GSRon said:

Hi Jenn

Hi Jenn... you found us all right..!  I am glad to hear you are getting both a CT and an MRI.  Those tests will give the Doctor a lot of info, but the final word will not be known until hafter the surgery when they do that pathology on that nasty tumor.  As Iceman said, you most likely get to be one of the lucky ones... Like you always hear, early detection means a lot...  Hang in there... and try to stay postitive.  Let us know when the deed is done...  Oh yes, and your body will not be your friend for weeks after the surgery.. go slow and let it heal.

Ron

Well, it sounds as though you've got a valuable part of your support team in place, Jenner, and now you've added us in - we know a great deal, between us,  and we have practical knowledge that your Family can't be expected to have since they haven't gone through it all, as we have. 

Fortunately, you can believe that, in general, what you're told here (being learnt from hard experience) is fairly dependable - even when coming from kids like iceman who are still only in their 60s!

1st, I am sorry we have met this way. I was diagnosed in October 2012 with a 17 cm, 2lb tumor in my right kidney. I am a 43 year old male with a wife and two boys 11, and 14. I had radical nephrectomy 1 week after diagnosis, hand assisted laparoscopic. Being male, it is required I say "mine was bigger than yours"

It is scary stuff., and will continue to be scary stuff, but you are going to be OK. I am originally from Springfield, Mass and have a distant cousin in Springfield with stage IV RCC and is being treated in Boston. When discussing my cousin's situation and 2nd opinions with my oncologist (I am stage IV and had metastasis to my remaining adrenal gland so treatment options and 2nd opinions after the surgery was part of my path) indicated a doctor's name In Boston that was world class...so if you do need more than surgery for your cure, it will be convenient. I am currently in Charlotte, about 20 minutes from a very strong regional kidney cancer facility. It is nice not to have to travel for appointments, sounds like you are lucky like that as well.

A couple of notes from my experience from surgery that may help you with what to expect

1) CANCER SUCKS

2) Scans and MRI's are easy, but "the waiting is the hardest part" -Tom Petty

3) IF, and I say IF, you have metastasis Revealed in you scans, don't panic and read "the Internet". All data on kidney cancer survival is basically data that is 5 years old. They quote 5 year survival rates, and most of the current treatments didn't exist 5 years ago.

4)Pain aftER laparoscopic surgery is a reality. Gas in you abdomin will travel to your shoulder area for two days or so. Get up as your doctor will advise and start slow walks as soon as you can. It will move the gas around and help you break some serious wind. You will feel better quickly when that starts happening.

5) your abdomin will be sore. I was in the hospital 3 nights and was scared to ride home because I was so tender. Short  walks and lots of water. As you start to feel better, don't over do it, take your time. You will be anxious to get back to normal, be patient.

6)In 4-6 weeks you will most likely be cleared for most normal light activities, but you will fatigue easy. I had surgery on Tuesday Oct 16 and returned to work on Nov 5. I often left a little early or came in a little late. I think I had healed fairly quick.

7) Ater your surgery is done and you have kicked Cancer's ****, you will feel a little guilty that it was so easy. If it has not spread, and you don't have follow up treatment, it turns out to be a relatively easy path. Radiation and chemo treatments for other cancer types are much more brutal than the treatment for stage I RCC.

8) Gaym tells some pretty good, and bad jokes-see Funny bonz IV post

Keep us posted on how you are doing, both physically and mentally. I didn't find this site until June, I wish I had found it sooner.

Have faith and confidence that you will beat this and be here for years to come.

welcome to "the club"

I am a bit older than you (49), and my cancer was also found while looking for the cause of abdominal pain (in my case, to rule out appendicitis).  I also had a 6 cm tumor on the right side.

In my case, they did the base CT scan (with and without contrast), but only a chest x-ray to look for spreading.  Hopefully, the new CT scan will cover the chest.  The most common place for RCC to spread is the chest; at my six month scan, they found a solitary met in my lung, which was subsiquently removed.  I am now NED through two scans (April and July).

If they don't see any evidence for spreading, then you get the surgery, and wait for the pathology report.  Odds are it will be T1b, and the only treatment will be surgery and scanning.  The remaining question will be grade...you want it to be low.  If it is low, then you should be in good shape.

Even laproscopically, recovery from the nephrectomy is hard.  I had a hand assisted laproscopic radical nephrectomy, and 13 months later, I still feel it.  The Dr. told me I would be back on my feet in three weeks; I did not realize he meant literally, I would be able to walk at three weeks.   I should note that my recovery has been slowed because 1) I am over weight (about 50 lbs), and 2) the second surgery meant that i am favoring both my right side and left side, which does not really work.

I do not know your life situation; plan on having help for several weeks.  If you have a partner make sure they are aware.  If you have smallish kids, try to have care worked out. 

Good Luck!

Hi Jenn,

Can't offer any advice that the others haven't already, but I just wanted to add my support.  I'm now 13 years out from radical nephrectomy at age 37 (5cm tumor on right kidney) and I'm doing fine.  No sign of recurrence and my remaining kidney function is excellent.  Hang in there and please know that you will get through this!

Jim

Digger95 said:

Adding my support...

Hi Jenn,

Can't offer any advice that the others haven't already, but I just wanted to add my support.  I'm now 13 years out from radical nephrectomy at age 37 (5cm tumor on right kidney) and I'm doing fine.  No sign of recurrence and my remaining kidney function is excellent.  Hang in there and please know that you will get through this!

Jim

Hi Jenn,

I remember well being where you are today although it's been a year.  My fear was through the roof, much of it due to googling statistics.  As you will hear from others, they are based on old data and there have been a lot of advances in treatment.  We certainly hope you don't need any treatment beyond the surgery and the only long term effect will be the incovenient, but necessary future scans.  You are still young, so your recovery should not be too bad.  My surgery was laparoscopic.  I went back to work after six weeks, but I am older and had other health problems so you may not need that long.  The first young Urologist that was going to do my surgery told me two weeks.  I don't know what he was thinking.  Mine was discovered as a result of scans for abdominal pain and weight loss.  While it may be hard to see yourself as blessed right now, you and I and many here are because, had it not been for other health problems, the tumor would not have been found in time.

Being a woman, I can offer one bit of advice men wouldn't appreciate.  One of the smartest things I did was purchase a neck pillow when I started driving.  The largest incision is in your pelvis right where the seat belt crosses.  I found that laying a neck pillow over my pelvis with the open part over the incision and belt going over it kept the belt lifted away from the incision.  I thought it was quite ingenious and tried to think of a way to get rich quick by patenting it as a medical device.

It will probably be about a week after surgery that you will get your pathology report.  Be sure to get a copy and share the details with us so we can offer additional advice.

Finally, I will leave you with advice I received from Icemantoo the night before my surgery which was wise advice.  Had to dig through old posts for this:

"Do drink the liquid plumber tonight

But now that you're here, you're family. 

I am terribly sorry for your induction here, but there is truly no other place you want to be to help you cope with this experience.

I came here in March 2013 following the same kind of phone call for the same problem.  My mass was a 4.5 cm tumor on the right kidney. It was removed by laparscopic hand assist surgery on May 14 at the VA hospital in Augusta GA.  Your reaction to all the news is typical. . .we all faced it and went through all those same peaks and valleys.  I wouldn't wish iton anyone.

Still, the fact that you are diagnosed early is a good thing. Imagine of they HADN'T found it!

You have unnerving times ahead. You've been given good advice by the whole family here.  Listen to them.  Whatever you read online, come here and ask us about it.  We are here for the good times, the bad times, the scary times, and the times you are just pi--ed off enough you want to yell and vent.  Bring em on!  We have been there!

Oneof the things I did that helped me most was I personalized the tumor. I named it, I yelled at it, I threatened it, and Ilooked at my surgery date as the day I got rid of something that wanted to kill me. LOL I even accused its parents of not being married!

I found that to be helpful  I looked forward to the surgery so I could get on with things.  You'll find your own coping mechanism.

There are lots of tips we can all pass along.  I don't have the expertise of many who come here, so I am mostly a cheerleader with a little bit of experience in the trenches.  Others here are dyed in the wool experts.  Come here often! Come with questions. Come with expectations of support and care.

But come here!

It is a roller coaster ride but I suspect you will handle it very well.

Pax!

Michael

Quite an initiation to the group, huh?  I compared it to hazing, but was told that felonious assault was a more apt description.

Regardless, I got the dreaded call May 20, laparoscopic nephrectomy June 5.  I spent five days in the hospital and a week with my mom.  I think I can attribute a great deal of my speedy recovery to the fact that she was making me crazy and I had to get out of there. Returned to work after two-and-a-half weeks.

It's terrifying, but it sounds like you've got a great support system, and you've found a great group here.  Take it easy, let people take care of you and take good care of yourself.

You're in my thoughts and prayers.

Anne