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New member "on board"--thanks for being there

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hi everyone-
My name is Scott. I'm 40 and I was diagnosed with stage RCC in my left kidney two days ago. I was having abdominal pain and the resulting CT scan showed a 4.5cm cyst on my left kidney. Biopsy followed and now I'm joining the club. I can't tell you how helpful reading the posts have been--I'm so happy this resource exists. I find myself re-reading the posts to keep my spirits up. Thanks to all of you for remaining active and sharing your experience and stories of survivorship.
I know it's important to stay positive and that the prognosis is very good according to my doctor but I experience so many emotions each day ranging from sadness to hope to jealousy. I don't want to be jealous, but when I see others who are able to be completely invested in the "moment" with their kids and wife I am envious. I look forward to the day when this doesn't consume as many of my thoughts as it does right now. I can't wait for surgery on 1/9. CT scan on my lungs is 12/27 and am praying that all is clear. I know that the recovery from the survery will be challenging but it's worth the piece of mind knowing my body is rid of this terrible disease.
Thanks again everyone and Live Strong.

Scott

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

Scott,

Welcome, though it's through unfortunate circumstances. You will find a wealth of information here...we will do our best to walk you through the process. Do you know yet what type of surgery you are having?

Merry Christmas
Rae

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Thanks Rae and Merry Christmas to you too! I am having an open procedure, likely full due to location of the tumor. I know recovering will not be fun but it beats knowing that the cancer is still there.

Scott

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Mine was open surgery as well. I won't kid you; it hurts. They know it hurts, so ask for more pain meds if you need them. You'll definitely feel better (and heal more quickly) if you do what they tell you to do: get up and sit in the chair, walk to the sink, walk the floor, etc. Everyone is different, but you'll likely be on the pain meds a while. You'll certainly feel better after just a few days at home, but I didn't start to feel really like myself until 6 weeks. That seems to be a real demarkation point for most abdominal surgery patients.

Get any heavy lifting needed around the house done now so that you won't have to strain yourself too soon after surgery. Get pillows to prop up around you for the couple of hours you'll be able to stay in bed at a stretch. (Or borrow a few of the kids' stuffed animals.) Yeah, I spent a lot of time moving back and forth between the bed, couch, recliner. Do what you have to do to make yourself comfortable.

Hey, this was your Christmas gift this year, though it may not seem like it -- early detection = surgical cure.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Thanks so much for giving me a heads up on what to expect Jamie. It really helps. I'm so with younon the early detection equals a cure. I desperatelynwantbto see my little boys grow up. Merry Christmas.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Scott,
I had an open partial nephrectomy on December 6th, so I'll be about a month ahead of you in recovery. The emotions you are experiencing sound very familiar. I'm still experiencing some of them but I now have the surgery behind me and have answers to a lot of the questions you're waiting to have answered.
The surgery and recovery are tough but once you get the surgery behind you, you can start moving forward. I felt the same way about not being able to wait for the surgery. It's a great feeling to have that behind you.
Hang in there!
--David

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Thanks David. I'm happy to hear that you are doing well. I know that I need to take it day by day-selfishly I'm hoping the next two weeks fly by. Congrats on getting the surgery out of the way. Wishing you a speedy recovery.

--Scott

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

Sorry to welcome you. But Jamie is right. Especially about getting your heavy lifting done. And as on other threads, get your recliner in position. It is soo..helpful. Otherwise, the bad news has been delivered. The good news is your new friends will be here,and your medical people will take care of you. Remember your family loves you so stay strong for them too.They will likely have a harder time with this than you will. I always say to read as much as you can and be informed when options are offered.....Hope you enjoyed the ball game.

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

My surgery was Nov. 23, laparoscopic, but the tumor was 7.8cm so he had to make a larger incision to get it out. The others are correct about lifting, I still am very careful about it. Also, don't try to overdo any activity. I am going back to work part time tomorrow, but taking it slow.
There will be emotional ups and downs, but keep your positive attitude, it will carry you a long way. And definitely stay in touch on here, there are a lot of great folks who have been through the same experiences that you are having right now. Check out icemantoo's posts, he is one of the "old timers" and will tell you that there is no way to sugar coat the surgery, or first few days of recovery, but jut hang in there.
Keep us posted as you progress, we'll be praying for you.

Mike

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

I've read all of your posts Mike. Thanks for sharing your story. Over the last week this site has helped me a lot. 'm so happy your life is starting to get back to normal--who thought going back to work would become a milestone for us. I will definitely keep you posted. CT scan on lungs is Tuesday. I really need some good news right now. Have a great first day back to work.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Really happy the Packers won, but a little worried about the defense. Thanks for the support and staying active on here. I know you post a lot and it helps all of us newbies. Definitely getting the recliner set up. If there is one thing I've taken away is that the surgery recovery is challenging and that slow and steady will win the race.
On the family side of things, we are going to tell our kids today--didn't want to have them think about this during Christmas. I've got tears in my eyes thinking about telling them, but it's best to be open and positive with them. We'll make it.

keephopealive11's picture
keephopealive11
Posts: 21
Joined: Dec 2011

Hi Scott, we have something in common. We are in 40s, and have two kids and lovely family. My kidney mass is 5.8x6.2, and my surgery will be laparoscopic on Jan 24.
On the family side of things, I haven't told my daughters yet because I just felt too difficult to say. I just mentioned to kids that my kidney is not good, and doctor has to perform the surgery to fix it.
Good lick!

Bill Baker
Posts: 23
Joined: Oct 2011

Good luck Scott! I am also in my forties. Just had an open surgery on November 28th. I agree with all the other statements. Be patient, eat well and rest often. It is easy to overdo and forget some of your restrictions (especially once you begin to heal). How old are your children? My daughter is 15 which made the conversation easier. Kids are more resilient than we think. They may be more aware than you know. Also, you will be able to model how to deal with this issue; i.e. it is okay to cry, express your feelings etc.

This is a journey so pace yourself. I begin chemo on the 6th; which I am now trying to "prepare" myself.

Welcome to the forum. My thoughts go out to you. Again, good luck tomorrow.

Bill

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hope,
We broke the news to the kids yesterday. I have two boys ages 8 and 11. To my relief they took everything in stride. We were very upfront and truthful with them regarding the fact that I have cancer but that the surgery will remove the cancer from my body. The 11 year old had lots of questions, he's a pretty smart boy. He wanted to know the chances of survival etc. All in all, I feel better having told them. There are times I just want to talk openly with my wife about how I am feeling and hated having to manage the conversation around the kids.
We'll be enjoying the warm Summer weather in no time.
Scott

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

hi scott,
I was diagnosed with a 4.5 in my left kidney on 12/4/11. My surgery is 1/17. I know exactly what you are going through. I try to remain positive and pray a lot. My chest xray and bone scan were negative so that provided some relief. I am in my forties and have 4 kids. At least you are having a better football year than me, I am a dolphins fan! We are going to be ok and get through this surgery and put all this behind us. Read as much of this blog as you can, there is some great information and a bunch of awesome people who have been there and are eager to offer support, prayer,and positive thoughts.

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

Scott,

Hopefully you are a lot better prepared for this than I was almost 10 years ago. As for the Packers hopefully our Lions (who used to be known as the pussycats) can show them a little disrespect on New Year's Day. Seriously best wishes on what hopefully will be a mere bump in the road towards a lomg heathy life.

Icemantoo

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Iceman-
I feel pretty prepared as a result of all the great info on this board. You are an inspiration to us and I want to thank you for remaining active and helping us through this. I'll be at Lambeau on New Year's to wath the Pack play the Motor City Kitties. Sounds like the Pack is going to play to win versus rest their starters.

Scott

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

CWW-
I am so happy to hear that your scans were negative. That is really, really good news. I am having my chest CT today and am very nervous. I totally agree that this blog is sent from heaven. The advice and words of wisdom from all of the survivors is a blessing. You are right-we will get through this. The Pack has one a lot of games but I am worried that their offense lays an egg in the playoffs. Their defense can't stop anyone so the offense has to pick up the slack each and every game. My son Aiden and I will be heading over to Lambeau on Jan 1st for the Lions game. We go to the last game at Lambeau every year.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Sm4pack,

Please add my thoughts and prayers to all of those that support you, and whether you live on Lake Michigan's eastern or western shores we all start anticipating summer right about this time of year. I've been a life long Lions fan, but the Packers have always been a close second, I loved Lombardi's philosophy/attitude. I actually met Ray Nitschke one time on a cruise, what an incredible experience and what a cool guy, but I digress. I can only echo what everyone else has already said, adding that you will be fine and I am sure you will be returning to Lambeau with your boys for many many years.

Good luck and God speed,

Gary

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hey Gary-
Thanks for the support. I'm happy the Lions are having a great season. Lion fans deserve it. I remember the 70s and 80s when the Packers were the NFL's doormat. Favre and Reggie White brought the franchise to life and we haven't looked back. Stafford looks like he will be good for a long time. This Sunday at Lambeau I'll be rooting for the Pack but I have a suspicion I won't be taking football games so seriously moving forward. The playoffs will be a nice distraction during my recovery though.

Scott

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Scott,

Your suspicion is correct, your perspective on what is and is not important in life is going to continue to change because of this life changing event. You will remain on the emotional roller coaster for quite awhile, eventually things will settle down and return to "normal", but I guarantee the everyday things that used to rock your world will no longer be focal points. One of the few good things about cancer is that it teaches you how fragile life really is and you learn to appreciate things that are truly important like family and fulfillment. It may not seem like it yet, but you have been given the opportunity to enjoy life for what it is without the worries for what it is not.

Good luck this Sunday and beyond,

Gary

Bill Baker
Posts: 23
Joined: Oct 2011

Scott, I hope your chest x-ray from yesterday came out well.

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

Scott I hope all was clear w chest scans. We have been lucky there so far. My son was up and out after a week. They said they had never had anyone on their table with such little body fat. The tumor had adhered itself to the wall cause there was no fat. They had to cut into the wall and yes as you guess muscle to get clear margins. It took about 2-3 weeks to get entirely erect but he fared really well. You are young and strong so my guess is you will be the same. And BTW I believe you will see those boys grow just like I will see mine grown and having babies of his own. You can manage this disease but yes it looms over you forever.

Gail mother of Cody 21
diagnosis 8/10/11 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head skull 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,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor(not open) (started at 6cm but sutent was working!!) Still unclassified 
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 (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Scott,
That's excellent news. Next is the surgery itself, which will go fine and you will be a full-fledged, dues paying member here.
Regards,
Mike

Bill Baker
Posts: 23
Joined: Oct 2011

Great news Scott! I will thinking of you and your family on the 9th. Happy New Year's-here is to some healing.

Bill

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

scott,
so happy to hear your chest xray was clear. I know what a relief that is. Have a great time at the game and have a great new years. Looking forward to hear from you after the 9th.

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

Glad you got good news!
Get any heavy lifting done before surgery. And take it easy, walk, and take your pain meds when needed. The first few days may be kind of rough, but it gets better very soon. I went back to work last week, 5 weeks after surgery.
I'll think about you for a little while on the 9th, ;-)
I live in Alabama, and have been a lifelong Crimson Tide fan, so I might be a little busy that night!
Keep us posted as you progress.

Roll Tide!
Mike

tom_in_VT
Posts: 25
Joined: Jan 2012

that's wonderful news Scott, collect all the small victories you can, when you can! Open surgery on right side 12/20... out shopping w/ the Misses yesterday for 2.5 to 3 hrs. I was whooped when it was over but happy I got out. 1st follow-up appt w/ the surgeon on Wed morning, I am looking for a small victory to gather for myself. Best of luck with your surgery tomorrow and YES - use the pain meds given, you will be sore. I say sore is better than the alternative, remember to smile, we are lucky people in that medicine has progressed to where it presently is.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Gail
Cody's story and timeline is amazing. What a special young man. Your family have been through so much. The treatment looks like it is working, I'll continue to pray for you.

Scott

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

Thanks so much Scott. He is really a tough kid and keeps himself very intellectual about this. Much smarter then his mom. We are having all our rescans done on Tuesday. I pray we are stable and are having continued remission in the 3 small liver mets. If that's the case we are really close to getting NED. I need him to stay with me in this horrible game for this decade as my research scientist sis studying this exact disease in Switzerland believes his cure will come in this decade. So I need him to stay a long term survivor. We may try IL2 in May not sure. Our doc thinks that that PD1 will be orphan approved this year which is far less SE's then IL2 so we will see. Stay strong you will do great!!

Gail

micatex's picture
micatex
Posts: 10
Joined: Dec 2011

G'day Scott,
Glad to see that you are more positive about what you are going through mate (as you can tell I'm an Aussie lol). My surgery was early February 2011. I had my right kidney completely removed due to cancer then and are feeling great. Don't be like me tho and try to do the same things as I was doing before the surgery. I now have a hernia that has come through due to trying to do to much before my body had time to heal. Be patient with not being able to be as independent like before. Healing takes time so let time do the healing (wish I heard these words earlier lol). We all here have been through or are going through similar things as yourself and will try and be here for you both before and after surgery. Keep in touch and keep positive like you are now.
Cheers,
Mica

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Thanks for the advice Mica. I appreciate it. This is such a great resource for all of us. I am reminded of the story of the tortoise and the hare. I am going to take the slow and steady approach to recovery.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Hey, good news on the chest scan! I'm glad you talked honestly with the kids. Age-appropriate honesty is the best way to go. You also set the tone for how they will handle challenges later on in life, health-related and otherwise: positive outlook, due diligence. You're a good example for your kids.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Scott,

Congrats on the news now all you have to concentrate on is getting that little leach removed. I have to ask, did you get your surgery scheduled for the Packs bye week on purpose? Just kidding, but you should be feeling good enough to watch them start their run albeit on TV for the first game at least. My Lions came up a bit short against the Pack's seconds, but the zebras didn't help us much either, at least nobody got "stomped" this time around. Hope we get another shot, but the Saints just might be the team to beat this year. If the Lions can't I hope the packers do. You have a positive attitude going for you and that will help a great deal during recovery so keep it up.

Good luck and God speed,

Gary

Bill Baker
Posts: 23
Joined: Oct 2011

Good luck on Monday Scott; will be thinking of you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Consider : smallish tumour, you're only 40, you've had a clear chest scan, you've broken the news, so no stress worrying about that, and you've got the support of your family and everyone here wishing you well. You've got everything to live for, the docs say your prognosis is very good and many people are born with only one kidney and live normal lives.

If you heed the great advice given by the likes of foxhd, in a few months you'll be back to normal but, actually, better insofar as you'll probably have an even deeper appreciation of all you have both now and for the future.

NanaLou
Posts: 69
Joined: Oct 2011

Best of luck tomorrow. I will also send up some prayers for ya. I just turned 40 this past week, so we are the same age going tru this. I had mine taken out on November 18th. I am back at work now. Mine was an open surgery. It was pretty rough, but I made it thru and so will you. Take it easy and keep us posted.

NanaLou

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Scott,

Thoughts and prayers headed your way today, you'll be your old self before you know it.

Good luck and Godspeed,

Gary

Bill Baker
Posts: 23
Joined: Oct 2011

Thinking of you Scott (and your family)!

Bill

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