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Hoping for some positive vibes...and reassurance?

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Hi all...Just spent an hour or so looking at all of the posts.  I'm really surprised by how many people there are here who offer advice and send positive thoughts to newcomers like me.  I'm very happy to have found a place to go To read stories and hear from people like me.  I'm a 41 year old woman, but I still feel like I'm 29...which is one of the reasons this has been so hard.

My doctor ordered a CT scan due to abdominal pain, which turned out to be diverticulitis. The scan also showed a 6cm mass in my right kidney. I was devastated. That was about a month ago. Since then, I have met with my surgeon at Mass General. He has given me as much info as he can, but he probably doesn't know much himself.  I asked if he could tell if it had spread, and he said there was no "evidence" that it has, but they need to do more  tests.  He has told me that I've will be removing my kidney...I guess the procedure will be laproscopic. I think that's good.

Although I am very thankful that my doctor found the mass, and I believe I have the best doctors possible, I’m very scared. I don’t know if it has spread beyond the Kidney, or what my chances of survival are. I have a new CT and MRI scheduled for Monday and Tuesday. Then surgery this coming Friday. I guess that will tell the doctor more. It’s just very scary and difficult to be in the dark about your future.

I’m fortunate to have a wonderful husband and family who try to keep me thinking positive. Any advice or positive thoughts would be very much appreciated!

icemantoo's picture
icemantoo
Posts: 1526
Joined: Jan 2010

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

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Thank you....that made me smile!

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

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

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

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!

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

I'm so glad I decided to join!  I'm very lucky to meet kind people like you guys.

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Jenn, you should know that us olde guys just like young chicks..!  :)

Ron

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Thank you.  Very glad to get the straight story from you guys.

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

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 ass, 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"

 

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Darron-

thank you!  I will keep you all  posted and please, please keep me posted as well!

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

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!

Digger95
Posts: 59
Joined: Jun 2010

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

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

 

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.Smile

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

Do get a good nights sleep
Do relax before surgery
Do think about all the NEDs to come
Do keep a sence of humor

Don't run down the hospital corridor with the IV attached
Don't even think about the Nathan's hot dog eating contest
Don't go on a roller coaster until next summer
Don't get on a Harley for at least 4 weeks

Icemantoo"

BTW:  "NED" means "no evidence of disease".

I'm glad you found us.  Feel free to lean on us as needed.

Kathy

 

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

You guys great.  

 

I hope I can one day be the wise one giving advice to the new people....

 

jen

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Liquid Plumber... that is toooo much... 

Jenn.. as you can see we all try to keep our humor in spite of it being a serious disease...  it helps for sure..!!  Remember the fear is way worse than the surgery..  It won't be long until you look back and smile...

Ron

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

Hi Jenner

 Sorry to welcome you to the Board but there are really great guys here. Don’t worry so much about the surgery!  I never had so much as a sick day in my life, but was ignoring a herniated disk for too long and broke down and went to see the orthopedic surgeon.  He sent me for an MRI and three days later the phone rang during the Daily Show and I saw his name appeared on the phone and knew I was screwed.  I used to smoke so the first thing I thought of was lung cancer. I didn’t know exactly where the kidneys are or what they did.  It was 11.14PM September 11, 2012.

I had a huge tumor ……..twice as big as yours but nothing close to the Darron’s.  I never had any symtoms and couldn’t believe it.  On October 5th I had land assisted laparoscopic surgery. They wheeled me in to the Operating Room.  It was pretty cold.  I didn’t have contacts or glasses on so I couldn’t see much except I was surrounded by huge HD monitors. There was a big clock on the wall and it was exactly noon. 

 I woke up and there was another big clock in the Recovery Room which read 8.26. I had trouble breathing from all that gas they put in you and it hurt but I didn’t feel that bad.  I had to stay in the Recovery Room for an extra hour because my blood pressure when a little out of control.  I got to my room at 10.30 and sort of was in and out of sleep until the morning.

The first day it hurt but the biggest thing was the breathing.  It scared me although everyone said this was normal.  I really wanted coffee. I did not want visitors and wish I had thought of this in advance.  My friends meant well but I wanted to be alone except for my wife and my boys and my best friend who was my roommate in college over 30 years ago.  I couldn’t really sleep the second night and made myself walk slowly around the floor.  The gas left me at about 5.00AM and it was a good thing no one was around. It was great to breath normally again. I was discharged the following day and planted myself on the couch in my living room for two weeks with perocets and Netflix. I tried to go back to work the third week but became exhausted and took another week.  It is important not to overdo it.

 

About a week after the surgery you get your prognosis.  I wish I knew these guys at the time because I started goggling and got really depressed.  Stay away from the internet and especially anything more than a few years old!!!  We are really lucky to live on the east coast and Mass General is a great hospital. You will be fine.

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I did not handle things well with my family.  I think the saying is true that "When one person in the family has cancer,the whole family has cancerr".  I tried to avoid telling my daughter who was in Africa at the time ( she is doing her nursing clinical at Mass Gen now).  I realized she was going to find out from someone else and it didn't go well when I finally told her. I acted fearlessly around the office but I was scared and I exhusted myself doing this.  I also did not recognize how worried my wife was and was more then a little self centered in th three weeks before surgery.  Everyone was just trying to be helpful. I was lucky they were all there for me.

 

Don

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

I appreciate all of the heartfelt advice. I can really use it.  I also do feel very fortunate to be here in the boston area(ish) so that I can be near the best docs.  I hate whining and feeling like I need help since I have always been so independent.  I guess this kind of thing changes you...I have to accept help when it is offered.

jen

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

Welcome to the boards but I'm sorry you had to find us! I was close to your age when diagnosed. As you can tell from my User name I was 46 at the time and shocked......and p---ed! I came down with very sudden and terrible stomach flu that immediately put me in the hospital. The ER doc ran an test called a d-dimmer test (tests clotting factor in the blood) and it was very high. Because of that she did a chest CT to check for clots in the lungs but no clots were found. She told my hubby that a clotting factor that high could mean a malignency somewhere. Because they were sticking with their diagnosis of stomach flu I usually would not have followed up with my GP but just because of that test result and what she had said to my hubby I did follow up. So an ultrasound and an ab CT later I got that call....5.5 cm tumor on rt kidney. Had radical hand assist laproscopic nephrectomy in Feb 2012. Have scans keeping tabs on a couple nodules in my lungs, they tell me they are doubtfully for RCC but we watch and wait. The surgery was really not too be to me. The worst was the air they pump in to you so they have room and can see. It is VERY uncomfortable. The nurses gave me warm compresses and those really helped for that! Walk as much as you can tolerate while you're in the hospital it will help everything get moving again (if you know what I mean) andy you want that for comfort sake! I was back at the office 3 weeks after surgery, and I did go home early a couple of times but it went much better and faster than I expected. You will do GREAT! I'm sorry you're part of our clan now but sure are glad you found us! Hang in and keeps us posted. -Kris

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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

 

Eims's picture
Eims
Posts: 418
Joined: Feb 2013

hi jenner, i am so sorry you have come to join our club but i must say we have the best members EVER.  i know how you feel because i was diagnosed the day after my 41st birthday and i still feel 29 too!!  i promise you that you will get through this and come out the other side.  as said by the others its not easy but you can and will do this.  i had a radical through open surgery and it took me a while to get back to some kind of normality but i am getting there all the time.  it is a shock i know and you will have your "mad" moments as i call them but that is to be expected.  everyone here is wonderful and it helps it really does......any questions will be answered and it will help ease your mind.......

eims x

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

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

 

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

Hi Jenn,

I'm very sorry you are here, but as everyone above has said, you've come at a a good time.  Your mass is still relatively small and it is unlikely it has spread, in a very short time all of this will be behind you and you can go back to concentrating on a "normal" life for 50 years or so.  You may find that occasionally you need an understanding ear or shoulder, when that happens we're here and will help any way we can.  Feel free to pull up a chair and hang out for awhile, welcome to the club.

Good luck and Godspeed,

Gary

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Go out for a pizza and beer. At the beach.

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

I was in shock for about 4 weeks, until I had enough info to put together a plan of attack.  The first step is getting that mass out and recovery.  After that, scans and results will guide your path.  Live one day at a time.  These guys are a wealth of knowledge and correct about not paying attention to most of the internet info.  The data is way behind current treatment results.  There are options out there, just need to find the best one for you. 

Keep the faith.  Good luck!

Lou

 

 

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Hi all!  

Tomorrow is the big day...I truly appreciate everyone taking the time to tell me their stories and words of wisdom!

I hope to be able to be one of the people doing the pep-talks soon.  

talk to you next week!

 

jen

Eims's picture
Eims
Posts: 418
Joined: Feb 2013

good luck jenner and we will see you when you get back x

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Show that tumor who is boss!  It's been hitchhiking way too long!

NO PRISONERS!  KICK ITS A55!!!!

With you in spirit!

Michael

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

Good luck. Praying for good clean removal and quick recovery.

You will be amazed how much better you feel every day!

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

I'm sure all will go smoothly and you'll be back home in no time.  Remember to walk as much as you can, gradually increasing the distance/time, and drink plenty of water, both will aid big time during recovery.  The next two weeks may be a little rough, but in a month you'll be wondering what all the fus was about.  Post as soon as you're up to it and let us know how everything went.

LuckyDucky
Posts: 8
Joined: Jul 2013

I was in your exact same position two weeks ago tonight,  and I had all the feelings you are having now, completely normal.    Try to get some rest tonight and stay positive that things will go as well as possible tomorrow.  Believe me, it will be a good feeling to have the surgery behind you.  You will be in good hands...good luck!

icemantoo's picture
icemantoo
Posts: 1526
Joined: Jan 2010

The surgery will not be fun, but getting the Cancer out of you will make it worth it. My Dr. wrote on my Discharge Summary that I was discharged 2 days post surgery without pain.

I do not know what he was drinking at the time he wrote this.

 

Icemantoo

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I really bothered me in the three weeks before the surgery that I had this thing growing inside of me.  It not only depressed and pissed me off but the thought of it was pretty gross. It is true that it will hurt tomorrow and you will have trouble breathing for a while but the thing will be gone.  This is a  really good feeling. Sending prayers and thoughts your way. 

 

Donald

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Hey Jenner.. you cute little chicky... hang in there.. sending good thoughts and prayers your way..!  Remember you get to sleep through it, while the surgeon has to work..  See you back here soon..!

Ron

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