Just joined the club

cww71964

Hi All,

Wife and I were having a stay-cation at a local motel on 12/4/11. We were just relaxing and enjoying the hotel amenities. We spent some time in the hot tub and I had the jets pounding my lower back. A few hours later I had blood in my urine. I freaked out a bit,but remembered that had happened once as a child when I had a bladder infection. The wife and I started looking on the internet and thought infection or stones. A few hours later the nauseating pain in the lower back came on. We decided to go to the ER. They were sure it was stones but had a ct scan to be sure. We were devastated when the Dr. came in and told us she was sorry but it was a mass, most likely RCC. Luckily, there was a urologist there on call and he confirmed the diagnosis and got me in to see him two days later. The wait was an eternity. The Dr described the mass as approximately 3.5x4.5 centered in my left kidney. Because of the location, the entire kidney has to be removed. He said I was very lucky that it bleed at this size. I say God sent me to that hot tub to have the jets pound my back. The passing of the clots caused me a lot of pain for a few days but I have been fine since. I am scheduled for surgery 1/17/12. I just want to get it over with. I have been ok most days but last night was wide awake with fear and anxiety. I am 47, never smoked, try to eat well and keep in shape. My first grandchild was born in August, I want to be around for her for her and the rest of my family for a long time. Finding the blog was a blessing, with all the positive attitudes, information, and nice people willing to help and pray for all. Can't say I wanted to join this club but I appreciate that I have a lot of good people with me as club members.

myboys2

Sorry ur in the club
Here is what I can tell you, you can live with this disease but you never know when it will show its ugly head. It typically hits certain places, lymph, lung, bone, liver and brain. Yours is small so it is likely it was caught early. You have to be the driver of this story and don't take no for an answer if you feel unsure of that answer. I might also recommend you questions be asked on the acor.org site. These folks are full of intellectual information. Hope that helps.

Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!)
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

cww71964

myboys2 said:

Sorry ur in the club
Here is what I can tell you, you can live with this disease but you never know when it will show its ugly head. It typically hits certain places, lymph, lung, bone, liver and brain. Yours is small so it is likely it was caught early. You have to be the driver of this story and don't take no for an answer if you feel unsure of that answer. I might also recommend you questions be asked on the acor.org site. These folks are full of intellectual information. Hope that helps.

Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!)
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

myboys2
So sorry you have had so much going on this year. God Bless and you will be in my prayers for a full and speedy recovery.

I had chest xray and bone scan done last week and all came back negative so I am praying that mine was caught early enough.

garym

Welcome to the club...
cww71964,

No, its not a club anybody wants to join, but now that you are here you will find a solid group of knowledgeable and supportive people. I'm just over 2 years post op for a left side tumor slightly larger than yours, I lost my whole kidney too. The fear and emotions you are experiencing right now are normal, they will likely intensify somewhat as the surgery gets closer. The best advice I can offer at this point is find things to stay busy and keep your mind off it, easier said than done, but you can do it. Work on projects around the house that you may have been putting off, increase the amount of exercise you normally get now, it will pay dividends during recovery, make plans for your recovery, anything to keep busy. Because your tumor was found early the odds are somewhere north of 90% that this is the only treatment you will ever need. Yes you will be required to have follow-up tests and scans for several years, but it is a small price to pay. Keep us posted and we'll help you through it.

You are in my thoughts and prayers,

Gary

cww71964

garym said:

Welcome to the club...
cww71964,

No, its not a club anybody wants to join, but now that you are here you will find a solid group of knowledgeable and supportive people. I'm just over 2 years post op for a left side tumor slightly larger than yours, I lost my whole kidney too. The fear and emotions you are experiencing right now are normal, they will likely intensify somewhat as the surgery gets closer. The best advice I can offer at this point is find things to stay busy and keep your mind off it, easier said than done, but you can do it. Work on projects around the house that you may have been putting off, increase the amount of exercise you normally get now, it will pay dividends during recovery, make plans for your recovery, anything to keep busy. Because your tumor was found early the odds are somewhere north of 90% that this is the only treatment you will ever need. Yes you will be required to have follow-up tests and scans for several years, but it is a small price to pay. Keep us posted and we'll help you through it.

You are in my thoughts and prayers,

Gary

garym
Nice to meet you Garym. Thanks for the advice and prayers.

foxhd

If it helps, you won't be
If it helps, you won't be the last new member. Kinda sucks but all of us know what the bad news is like. For me, diagnosis and surgery were in just a few days from each other. Not much time to worry. Waiting a month and laying awake at night has gotta be tough. You'll get through this. We are here to offer support. Lots of experience and knowledge here. My biggest advice would be to begin reading up and learning all you can. It is good to have some background of this disease when talking with your doctors and choosing available options. Good luck!

Jamie1.3cm

foxhd said:

If it helps, you won't be
If it helps, you won't be the last new member. Kinda sucks but all of us know what the bad news is like. For me, diagnosis and surgery were in just a few days from each other. Not much time to worry. Waiting a month and laying awake at night has gotta be tough. You'll get through this. We are here to offer support. Lots of experience and knowledge here. My biggest advice would be to begin reading up and learning all you can. It is good to have some background of this disease when talking with your doctors and choosing available options. Good luck!

small tumor = surgical cure
It truly is a blessing when it's caught early. Yours has not had a chance to spread, and you can live a perfectly normal life with one kidney (some people are born with only one).

People do get anxious waiting for surgery though. Kidney cancer is VERY slow growing, however, so don't let that aspect stress you out.

And they may well be doing your nephrectomy laproscopically, and that means your recovery is likely to be easier than open surgery.

Good luck, and keep us posted on how you're doing.

braswelm

The unwanted club
Welcome to the unwanted club cww. But the others are right, they got it early. Mine was 7.8 CM, and I had the kidney removed 27 days ago.
It had not spread, and the doc says I have a 90% cure rate. Expect that to go up thru the years.
Iceman has said many times on here that there is no way to sugar coat the surgery or first few days of recovery, but you will be fine. If it is laparoscopic, you will be out and about in a few weeks.
What helped me the most was approaching it with a positive attitude, and the power of prayer.
Hang tough, and keep us posted on your progress.
Mike

cww71964

braswelm said:

The unwanted club
Welcome to the unwanted club cww. But the others are right, they got it early. Mine was 7.8 CM, and I had the kidney removed 27 days ago.
It had not spread, and the doc says I have a 90% cure rate. Expect that to go up thru the years.
Iceman has said many times on here that there is no way to sugar coat the surgery or first few days of recovery, but you will be fine. If it is laparoscopic, you will be out and about in a few weeks.
What helped me the most was approaching it with a positive attitude, and the power of prayer.
Hang tough, and keep us posted on your progress.
Mike

Thanks to all for your
Thanks to all for your support and advice. On my first visit with the urologist he said something about he uses the five finger technique for surgery, at least I think that is what he said as I was still in a daze from the diagnosis. Anyone ever heard of that? I am sure I will ask the question at my pre-op appointment on 1/10/12.

garym

cww71964 said:

Thanks to all for your
Thanks to all for your support and advice. On my first visit with the urologist he said something about he uses the five finger technique for surgery, at least I think that is what he said as I was still in a daze from the diagnosis. Anyone ever heard of that? I am sure I will ask the question at my pre-op appointment on 1/10/12.

Hand assisted...
ccw,

He may be referring to a "hand assisted" laproscopic procedure which simply means he will be reaching into your abdomen during the surgery as opposed to doing it completely with instruments or using a Da Vinci robot. Nothing to worry about unless all five fingers are thumbs.

Regards,

Gary

Minnesota Girl

cww71964 said:

Thanks to all for your
Thanks to all for your support and advice. On my first visit with the urologist he said something about he uses the five finger technique for surgery, at least I think that is what he said as I was still in a daze from the diagnosis. Anyone ever heard of that? I am sure I will ask the question at my pre-op appointment on 1/10/12.

5-finger technique - that's funny
I'm surprised my surgeon didn't use this phrase - he's a real card. I had a hand assisted laproscopy in July. I had two small (less than 1") incisions and one large one through my belly button - literally big enough for the surgeon's hand to fit through (about 6".) I think it was better than a great big incision - although no matter how 'they slice it' - it is major surgery. Know it will take time to heal, but the good news is the cancer will be OUT!

robert_douglas_smith

cww71964 said:

Thanks to all for your
Thanks to all for your support and advice. On my first visit with the urologist he said something about he uses the five finger technique for surgery, at least I think that is what he said as I was still in a daze from the diagnosis. Anyone ever heard of that? I am sure I will ask the question at my pre-op appointment on 1/10/12.

Your going to do fine...
You have found a great group here. Most of us here found our conditions by accident. Mine was found as a result of pre-op test for sinus surgery this past August. My left kidney was removed Oct 24th with 3 tumors the biggest was 7.2 cm. I was able to return to my part-time job after only 4 weeks. (work as veterinary tech two days a week.)As a matter of fact I go for my follow-up CT tomorrow. Praying for good results.
I'm sure you will do fine,just stay positive no matter what. Recovery is slow at first, but will improve every day. To me just the waiting is the worst thing.

Please keep us all informed.

Doug

icemantoo

robert_douglas_smith said:

Your going to do fine...
You have found a great group here. Most of us here found our conditions by accident. Mine was found as a result of pre-op test for sinus surgery this past August. My left kidney was removed Oct 24th with 3 tumors the biggest was 7.2 cm. I was able to return to my part-time job after only 4 weeks. (work as veterinary tech two days a week.)As a matter of fact I go for my follow-up CT tomorrow. Praying for good results.
I'm sure you will do fine,just stay positive no matter what. Recovery is slow at first, but will improve every day. To me just the waiting is the worst thing.

Please keep us all informed.

Doug

You will be fine
cww,

It is quite a shock being told you have RCC and than, that you need surgery right out of the gate. Now that that is all behind you, before you know it that the surgery qill be behind you and you will be helping the newcomers.

Best wishes,

Icemantoo



A

Sm4pack

We'll be recovering together
Hi-
I'm scheuduled for surgery on 1/9 so we'll be recovering together. Hey, at least we should be able to enjoy all the fun that comes with Summer! Anyway, I'm wishing you well and quick and speedy recovery after surgery.

Scott