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I'm new and nervous...

neenee3
Posts: 28
Joined: Oct 2011

Hello! Wow, what a difference a week makes. Enjoyed the birth of my 3rd grandchild one week and found out I had cancer the next. Still walking around in a bit of a daze. I feel GREAT, how on earth could I have a 8cm mass and not know it!? The mass does abut and slightly efface the liver without gross invasion is what my CT reads. Other then that it doesnt appear to be anywhere else. Have surgery scheduled for November 1st here in the Central Valley of California but we're also checking out UCLA. Has anyone been to UCLA? Blood in the urine is what took me to the doctor, happened twice and now hasn't happened again. I'm up for all and any advise anyone has to give me :) Oh, I'm a 53 year old female if that makes any difference. It's been a bit frightening to read this forum but I know I need to know all I can in the upcoming battle I have with this BEAST.

icemantoo's picture
icemantoo
Posts: 1515
Joined: Jan 2010

Being told you have RCC and then being told you have to have surgery right out of the gate can make anybody nervous. A little scary too. Most of us on this board have gone thru this. Mine was 9 years ago. Not fun to have something turn red that is not supposed to. Mine did as well. As for grandchildren, my youngest was only 6 months old when this was discovered. Try and stay positive. There is no way to sugar coat the surgery. This surgery has been done for years and is very safe. Over the last 5 or 10 years they have been doing more and nore of these laproscopic and with robot assisted surgery. By the way I plan to stick around for that new grandchild's wedding now that she is almost 10 as well as those of the 4 older grandchilren. I am 68 now so I only have to wait another 15 or 20 years or so. One piece of advise. One of our younger members went on a roller coaster 3 months after surgery. That is a no no. Wait a year for that.

Best wishes,

Icemantoo

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

Hi neenee3,

This is a club that no one wants to join but now that you are a member you can find comfort, support, and answers from those that are fighting the beast with you. I'm 60 and PaPa times 9, I had my left kidney and 5.1 cm tumor removed in November of 2009. The month between diagnosis ans surgery can be very difficult, try to concentrate on the things you can control and don't let the beast gain control over you. The more informed you are the easier it will be to deal with your situation and the decisions you will be making. Don't be afraid to hit your Docs with a big list of questions and by all means take advantage of the experiences and knowledge found here. Spend time with your family, especially the grandkids, I found they kept my mind off my inner demons and lifted my spirits at the same time.

Early stage RCC, as you now know is silent and usually found by accident when they are looking for something else, mine was a CT following an accident. Blood in your urine may or MAY NOT be a symptom of the disease, regardless be glad they found it now while there is time to do something about it. The surgery and recovery can be rough, no way to sugar coat it, but compared to what others go through with chemo, radiation, etc. we are the "lucky" ones. Good luck and God speed.

Keep us posted,

Gary

BG
Posts: 85
Joined: Jun 2011

Hi neenee3,

I am 49 and 3 months ago I found out by accident (screening liver enzymes) that I had renal cell carcinoma. I thought something was up when the individual doing the ultrasound kept working on the right side.

I went in for my 3 month chest xray today, and will get results on Tuesday. I had the laproscopic robotic surgery, and based on the other postings this is the easier way to go, but certainly not easy!

You are in my old stomping grounds, I lived in Thousand oaks CA for some time, UCLA should be well equiped. I had to wait 1 month for my surgery, and I understand the wait can be tough, easy to say "stay occupied", harder to do it.

Being 3 months post op, I feel pretty good physically, the healing takes time so do not push it.

I will be sending prayers your way, take care

BG

monique53
Posts: 19
Joined: May 2011

BG I had my Kidney removed in April.,,I still have pain when I'm working .Is this normal? Are you having any problem? My 3 month check-up was good. I lift and bend and twist alot. I get on off a fork lift. the pain comes and goes.

BG
Posts: 85
Joined: Jun 2011

Hello Monique53,

I asked my doctor about the pain I was having 3 months post op, and he said it is a hard surgery and you are still healing, plus the kidney is still healing. I have read posts that individuals have pain way down the road, but if you have concerns I recomend talking to your doctor.

I can say I did some yardwork last weekend, and I payed for it. I think you being so physically active could be part of it, please take it easy some times, your body needs some down time as you are only 3 months out.

BG

BG
Posts: 85
Joined: Jun 2011

Hello Monique53,

I asked my doctor about the pain I was having 3 months post op, and he said it is a hard surgery and you are still healing, plus the kidney is still healing. I have read posts that individuals have pain way down the road, but if you have concerns I recomend talking to your doctor.

I can say I did some yardwork last weekend, and I payed for it. I think you being so physically active could be part of it, please take it easy some times, your body needs some down time as you are only 3 months out.

BG

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

BG - I'm about 3 months post op as well. I see that you had the laproscope done. Mine was an open surgery down my left flank. I go to the doctor in 2 weeks for my check-up but I was wondering if you still have numbness and a swollen side? I'm hoping that because it was a partial and the open surgery are the reason for the slow recovery. I feel like I should be a lot farther along than I am. I walk everyday for at least 1.5 miles but it not getting me the results I was hoping for. Anyone else out there felt the same about the recovery? As you said physically, I feel pretty darn good except for trying to lift anything over 50 lbs.

BG
Posts: 85
Joined: Jun 2011

Hi Ripper, good for you on the 1.5 miles, wow. I still have incision site pain as well as some right side flank pain (kidney still healing from partial), not really numbness. It is amazing how long it takes for this to go away.

I can say you are doing well with the walking, my car accident back in November has complicated things so I am happy right now with 15 minutes on the treadmill. I do plan to start swimning regulary, start this weekend!

They told me I could eat and drink until midnight, so I took advantage of it.

Take care, and keep up the walking. Let us know how your follow-up goes.

BG

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

e Hi NeeNee:
I am now 4 weeks post op after having a partial removal of my 6cm tumor. Finding out about it was also a shock for me, totally unexpected and very very scary. This is not an easy road to travel but your definately in the best place for support and answers. The people here are the best around and trust me I spent quite some time surfing the net before finding this site.
Normally, they cannot tell you anything about your tumor until they go in and fetch it.Usually takes a week or so before they complete the tests on it to determine what type and stage of the demon you have so patients is required. Whatever type of surgery you decide on the recovery is tough, I'm still wading through it with some good days and bad days.... I am 51 and a 1st time grandma and I want to be around for my boy for a long time
Some doc's don't randomly answer questions unless you ask so I would suggest coming up with as many questions up front as you can to help you decide all your options. A few of the threads here give some good ones to add to your list... and you may have many many more after your doctor sees you that you didn't think to ask so this is also the place for that too...... I don't want to say Welcome to the club as its not a club anyone chooses to be a part of but if you need to vent, talk or just question we are all here for you.....
Your in my prayers and much love to you and yours....
My best
Kat

neenee3
Posts: 28
Joined: Oct 2011

I can't think of a better reason to get better then that! I'm still walking around thinking... is this really happening to ME? Someone that's only been to a hospital to have babies! I take no medications, live a healthy lifestyle, exercise etc. Why.... but here I am and thank goodness I found all of you!!! I hope I can give back to someone else like you've all given to me! Thank you so much!

My prayers and love to you and yours (especially the little one :)

neenee3
Posts: 28
Joined: Oct 2011

Thank you all so much for all the caring words... it's appreciated more than I can say. I'm full of so many questions. I live in a two story home with all the bedrooms upstairs. How is it to take the stairs after surgery? Might have to stay downstairs on the couch or is a recliner better? I'd really like to be prepared when I get home from surgery. My sweet Mom will be coming to help all the way from Montana. My biggest dilemma right now is figuring out where to have the surgery done. Small town doctor or a place that treats 2,000 kidney cancer patients a year. I have to say the size of my mass worries me. Strange how now that I know it's there I do feel it. Also like to know are there any items I should make sure to take to the hospital? How long is the average stay? I will have more questions to come. I keep drifting off and should take advantage of it since sleep has eluded me. When I do sleep, I keep waking up hoping this is all just a bad dream... Thanks once again for sharing your experience with me. Bless you all, I hope I'll be able to give back in the same way you have done for me :)

carlkcs11
Posts: 11
Joined: Sep 2011

Dear Neenee:
I am going on 2 weeks post surgery. I had a partial nephectomy for a tumor that was found by accident. I was in relatively good health and had no symptoms. I had robotic (diVinci) surgery which they say reduces recovery time. I actually feel quite better 2 weeks out. Still have abdomenal soreness but it is improving daily.
Things that I think helped in my recovery:
1) My doctor had me moving and walking around the room and corridors of the hospital next day after surgery. I was discharged after two days in the hospital.
2) I used the incentive spirometer they gave me, every 15 minutes. It is a device that you breath into to keep the lungs fully inflated. Pain sometimes causes us not to breath as deeply as we would normally. This Incentive spirometer device helps with this.
3) I couldn't get comfortable or get any sleep in the hospital bed so I remained in the rooms recliner all during my stay at the hospital and did the same when I came home.
4) I remained as positive as possible, and then when I came home, found this site where everyone here gave me hope that I was not alone in my worry and concerns. Hope. CARL

ams123
Posts: 71
Joined: Aug 2011

I had so many questions as well when I went to meet my surgeon, I printed them all out and asked them one by one. I was able to go up and down stairs as soon as I got home. I had bought a zero gravity deck chair, and it was wonderful. I could never get truly comfortable anywhere for the first week or so though.

I took my ipod (the hospital recommended it), lip balm, and eye drops to the hospital. That was all I needed. I packed a bag, but all I really used from it was my lightweight robe and my slippers for when I took walks around the hospital halls. I stayed two nights, but I had laparoscopic surgery, open surgery patients stay longer.

Keep asking questions! My surgery was 4 weeks ago, so it is still fresh in my mind. What I remember of it anyway, the anesthesia made me forget a lot.

Linda

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

neenee, I vote for the big city surgery. You will want someone who has done a lot of these procedures and knows the quirks.

What you're able to do afterward and how many days you stay in the hospital depends on the type of surgery you have: open surgery or laproscopic. You'll recover fairly quickly from laproscopic surgery; open surgery will take about 6 weeks. The first few days are the hardest. For laproscopic, you may be in the hospital 2-4 days; for open surgery it's more like 4-7 days, but everyone is different. They'll release you when your pain is controlled and your digestive system has resumed working. Walking will help that happen. Couches and recliners are usually more comfortable than the bed. I generally stayed in one place only for about 2 hours before I had to move.

When is your surgery date?

neenee3
Posts: 28
Joined: Oct 2011

I'll be heading down to UCLA for the surgery. Hoping for a surgery date by the end of the week. The surgeon thought it would be about 3 weeks from now. I'll cancel my surgery here when I get a date there. Thanks so much for all your good advise. I've learned so much here. It helps to talk with people who have been there!

lcsmithfam
Posts: 9
Joined: Dec 2010

We all know the how scary this is! My RCC was discovered by accident when I was having issues with my bladder. I had radical nephrectomy of right kidney on 8/30/2010. I would suggest that you go to the place that treats the most patients for RCC. Knowledge is so empowering. The open flank surgery is the most difficult to recover from due to the size of the incision and the overall wound. I found it easiest to wear the hospital gowns post op. Be sure to bring slippers. They want you to start walking asap to get things moving again. i was in the hospital for 4 days, but my sister is a nurse and provided so much support. Once home, I didn't move around too much. Getting in and out of bed or a lazy boy is a bit tough at first. But each day is better! Try to walk a little a few times a day. Cook some meals ahead so you can just microwave. Also, a back support (elastic band) that you can buy at the drug store helped me alot - kind of helped to "hold things together". If you are having lots of anxiety, as I did, talk to you doctor. You may be able to take a little anti-anxiety medication to help you rest and get through until surgery. After surgery, when you know the pathology of the tumor, you will feel much better. You might also look for an RCC or survivor support group near you. The kidneycancer.org site is full of information. This website is wonderful as everyone posts their own experiences which is so beneficial. I read so many, but did not post anything for so long. Now, after a year, i feel like I can offer some suggestions.

Good luck and i will keep you in my prayers,

ams123
Posts: 71
Joined: Aug 2011

I am a 51 year old female also, and I had my surgery 4 weeks ago tomorrow. It was less than a 3cm tumor which was removed with davinci robotic laparoscopic surgery (it was a partial). I stayed in the hospital two nights, because I had lost some blood and needed a transfusion, otherwise everything went well. I was on pain meds in the hospital, but didn't take any once I got home. I was able to do stairs as soon as I got home, and I started taking walks after about 2 days. I could drive after a week.

The little incisions healed quickly, and I had some pain here and there that came and went, but not seriously enough to take pain meds. I had a lot of trouble with nausea for two weeks, and that was the hardest thing for me. I couldn't eat much.

I still get a little tired, but otherwise I am pretty much back to normal. I was in good health before the surgery which helped I am sure. I didn't have any symptoms, my tumor was found by accident.

I recommend that you find a doctor experienced in this type of surgery and ask how many he has done. My doctor did 80 before mine, another doctor I was considering at Johns Hopkins has done 2000. But I trusted my surgeon, so I stayed at my local hospital, which is in a major metropolitan area. I will be seeing an oncologist at Johns Hopkins however.

Keep reading and make up a list of questions for your surgeon, it's best to stay informed. Good luck!

Linda

BG
Posts: 85
Joined: Jun 2011

I also had the davinci robot partial nephrectomy, and was in the hospital for 3 nights, one extra night due to nausea. To add to the lists above,

1) Make sure they give you anti nausea medicine.
2) Get a stool softener through your urologist as the pain meds in the hospital and at home can cause constipation.
3) When I was at the hospital on surgery day, the first nurse that checked me in I said I was sensative and very nervous and needed something for it before any IV's etc.. They gave me 2 valium and a tiny sip of water, and that really helped.
4) You will need to fast 12 hours I beleive, so try to get an early rather than afternoon surgery like me. I went at 11:30 pm to get a 1500 calories wendy's shake, as my fasting cutoff was midnight. My surgery was not until the afternoon the follwoing day, so I was hungry.
5) Totally agree with the breath thing, use it, use it, they will want you to walk, so the sooner you can the better. It will be hard to get out of bed, but you will walk a little farther each day.
6) For me they managed the pain very well in the hospital.
7) Rest when you need it!

Please keep us posted, my prayers are with you.

BG

ams123
Posts: 71
Joined: Aug 2011

BG - I can't believe you could have a shake the night before surgery! I had to be on a liquid diet from noon the day before, and I had to drink a whole bottle of magnesium citrate to clean out my bowels. But my surgery was early morning.

I also highly recommend the anti anxiety meds before surgery, and the stool softener after surgery. And the anti-nausea medicine, although it didn't work very well for me. I was nauseous for 2 weeks after surgery, but I have a very sensitive stomach and I haven't heard of that happening to anyone else.

Linda

neenee3
Posts: 28
Joined: Oct 2011

I'm going to get my list started tomorrow of all the things I need to have and do before and after surgery. Then I'll go over it with my husband. Boy, I sure hope I don't have nausea after surgery, that must have been terrible on top of everything else. I really appreciate the time you took to respond to my post. Now my post should read, "new and not as nervous" :) Thanks for all the great advise!

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

I'm new to this forum and I just read your post. I'm 12 weeks post surgery for partial neph. of my left kidney (7cm mass) As everyone else has said, do as your doctors say and get the rest that you need the first 2-3 weeks after. Although it is a pretty invasive operation, getting up and around in the hospial will aid tremendously in your speedy recovery. I don't think age is really of any concern with this operation. Being 38 and in pretty good health (I thought) and hearing from others in their 50's-60's it is all about taking it slow in the beginning. Best wishes in a speedy recovery.

neenee3
Posts: 28
Joined: Oct 2011

I'm just in awe of all the support I'm finding here. Thank you all for answering so many of my questions! I'm scheduled for surgery on November 1st here but will change that if I can get into UCLA first. My referral was faxed down there today. They said I should hear from them right away. I've been trying to stay busy which really does seem to help. Got my chest x-rays done, EKG, picked up a copy of all my records, etc. Not sure if I should bank my own blood, need to find out more about that. The doctor here says i'll need to have the open surgery because of the size. What direction do they make the insision? Kinda been on a roller coaster of emotions. I feel so good, it's just so had to believe that something is wrong. When I fall asleep, I wake and keep thinking this is all just a bad dream but it's not, it's real. I'm really blessed to have such a wonderful support group around me, such dear friends and family and all of you! Thank you all once again!!! I'm sure I'll be having more questions :)

Blessings and best wishes to all of you

carlkcs11
Posts: 11
Joined: Sep 2011

I was nauseous the whole first night after surgery. Couldn't even drink water. They gave me medication for this and it worked great. However, the first meal I was brought was some cheesey omlete thing with bacon. No way! I immediately ask for oatmeal and toast and fruit cups. Then all during the day and next evening I had apple sauce. I also drank plenty of water. I did have to frequent the rest room about every 1/2 hour which forced me to get up and move. Also be prepared for the lack of bowel movement for a few days (I ate light,fruit salads and oatmeal and plenty of water) Make sure you have pleanty of water to drink in the house.
The wait for surgery is hard I know. I also had to wait about 3 weeks for a surgery slot, however I used the time to button things up at work and also to increase my exercise. If you keep yourself occupied then the time will go fast. I still have sad thoughts. I guess I am in mouring for my once "normal life". "Why me" "what now" "what could I have done differently" These questions will always be there but as others on this site have told me, we can't let these thoughts control us. It's a choice as to how much control you want to have over the condition you are in. For me, the more control the better. Good luck CARL

ams123
Posts: 71
Joined: Aug 2011

I mainly ate the jello and broth, I was nauseous and had no appetite. I had packed a breakfast and my husband brought it to me the day after surgery, and the next day he got me a bagel. I also drank a lot of Dr. Pepper and ate a lot of saltines because they were the only things that settled my stomach, my husband brought those to the hospital too. I had a catheter until right before I was discharged, so I never had to get up to use the restroom. They were loading me up with iv fluids - I came home with 6 extra pounds of fluid.

I agree about control. Right now I am religiously controlling my diet and starting to exercise again. I am also trying not to work too much, and take rest breaks. Those are the only things I can control, and I can't stress out about the things I can't control (although they do invade my brain every now and then!)

Linda

neenee3
Posts: 28
Joined: Oct 2011

I love oatmeal and applesauce so I'll probably do the same thing. I walk 3 miles or bike 5 miles a day, 5 days a week. Started that back up today. I'm going to keep working on the positive attitude. I can't say it hasn't been quite a roller coaster of emotions but with more ups then downs. I've got so much support here and with family and friends. I feel very blessed for that! Thanks so much for all your great advise!

ams123
Posts: 71
Joined: Aug 2011

When you meet the doctors at UCLA they may have a different opinion on open vs laparoscopic due to experience, equipment, etc. And also partial vs complete removal of the kidney. I believe the incision for an open is horizontal, about 11 inches long, and extends around the side of the body. You lay on your opposite side during the surgery, which is how it was for laparoscopic also. I didn't know that until my post op visit to the surgeon and he told me then. For my laparoscopic surgery I had 6 incisions about one inch long, and a smaller incision for the drain. My incisions are on the left side of my abdomen and are all over the place, from the pelvic area up to my rib cage. They healed very quickly.

Honestly laparoscopic surgery does have a shorter recovery time and less pain, but many people have open surgery and get through it, so if that is what you need remember that you can get a lot of support from others here who have had the same thing.

Let us know how it goes at UCLA, I'll be thinking about you!

Linda

neenee3
Posts: 28
Joined: Oct 2011

I'm taking in all this information so I'm ready for surgery. Stool softener right away, walk to help relieve gas, make sure I have a pillow for all the laughing I'll be doing:) Looks like there's still a possibility of having it done laparoscopically even at 8cm is what they told me down at UCLA. I can't believe how much I've learned being here! Thanks so much for taking time to share your info with me Linda! It's invaluable!

neenee3
Posts: 28
Joined: Oct 2011

Well, have my appointment scheduled down at UCLA on Monday. Now I'm starting to have some anxiety about this whole thing. If I choose to have the surgery down there, what will the 3 hour drive home be like after surgery. Thinking about all the things that need to be done around the house before I have surgery. Did anyone bank their own blood before surgery or have a family members do it? Sleep is alluding me once again :(

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

You'll be glad to get it over with! _ I waited three months for my surgery- the waiting is the worst! I had a two hour drive home...I made sure I had pain meds in me for the ride. It wasn't as bad as I thought it would be -take a pillow, you will need it ( I used a small pillow a lot to hold over my incision when i coughed, moved around or rode in the car the first trip for the bumps).

I did not bank my open blood but did need two units of blood after surgery -so that is a very valid thought. Stairs are not easy - I think it was going down that hurt more than coming up for me.

You will do fine- just remember to allow yourself time to heal. It really does take time. And eat small meals. Gas and constipation will not be your friends.

Praying for a speedy recovery,

Rae

icemantoo's picture
icemantoo
Posts: 1515
Joined: Jan 2010

One of the things I do remember is the ride home. While it was only 20 minutes or so I felt every crack and division in the pavement. Make sure you take the ride in a full size car with perfect suspension. My ride was 2 days post surgery. If you can stay a few more days in the hospital or stay locally for a few days it would sure make the 3 hour drive a lot easier.

ams123
Posts: 71
Joined: Aug 2011

I actually didn't have trouble going up or down stairs from the day I got home, so maybe it depends on the person and the location of the incisions, etc. I did have pain when I laughed, coughed, sneezed or cried. The hospital gave me a pillow to hold against my abdomen whenever I had to do any of those things.

And stool softener!!! They started giving it to me in the hospital, and I had no trouble with constipation.

Linda

ams123
Posts: 71
Joined: Aug 2011

I had a lot of anxiety also, but everything seemed to move so quickly that I don't think I had time to process it. My hospital was only 20 minutes away, but I also felt every bump in the road on the way home. Before surgery I tidied up my house, closet, cabinets, etc because I knew people would come over and I didn't want to be embarrassed! I also did an advance health care directive and power of attorney, and gave a copy to each doctor and to the hospital.

I asked about donating my own blood and my surgeon said that 80% of his patients don't need blood, well, I was in the 20%. I needed one unit. So I would say that it can't hurt to bank your own blood if you have time.

Linda

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

And although I'm sorry you've had to join us, I'm glad you found us here. In one way or another, we've all been where you are and being nervous is OK. There is a wealth of information on this site and many many caring people. My journey with RCC started 10 years ago and I didn't find this site until many years later. Keep posting here - and know that we are all here to hold you up when you need us - or just listen when you need to let off some steam.

neenee3
Posts: 28
Joined: Oct 2011

Before I even opened my eyes yesterday morning, I heard, "I love you NeeNee" from my 5 yr old grandson. Now if that doesn't make me want to fight this fight this fight nothing will!!! :) Getting ready to head down to UCLA this morning for my appointment.

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

Hi neenee3,

Grandkids are just so genuine, innocent, and intuitively compassionate, hugs and kisses from them are absolutely the best reminder of why we fight and darn good medicine. Good luck at UCLA this morning, hopefully you will return much more comfortable with your situation and the decisions that lie ahead. Very soon all of this will be behind you and you can get back to the business of being Granny. As Gramps my motto is "Wind'em up and send'em home" (also known as Grampa's revenge), gotta love it!

My best to you,

Gary

neenee3
Posts: 28
Joined: Oct 2011

I'm back and I think we're going to go down there for surgery. I spoke with the Oncologist and the Surgeon who gave me a 50/50 chance of walking away from the surgery without cancer. Now back home for more tests. The Oncologist would like me to get an MRI of my brain, a CT of my chest an a bone scan. Has anyone else had all these tests done? I should hear about a date for surgery by the end of the week. Not sure how I feel about the 50/50. Back to more waiting....

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

neenee,

This just confirms that UCLA was he right choice. I believe they are being thorough because of the proximity of the tumor to your liver. RCC "likes" bone, lung, liver, and brain (in no specific order) so anything suspicious will trigger more tests. I had a bone scan because the CT showed lesions on my spine, turned out it was spinal stenosis. Knowledge is power, you will gain a better understanding of what to expect going in. Though you did not choose to be, you are now a warrior, and in this or any battle, the more exposed your enemy is the better! Our thoughts and prayers are with you.

Stay strong,

Gary

neenee3
Posts: 28
Joined: Oct 2011

Knowledge is power. I'm just so nervous to have those tests done... so worried it'll be working off the wrong side of that 50/50 chance. I know I need to stay positive and keep looking at my glass as half full rather then half empty. I can't tell you how much it means to have this forum to go to! I will be a WARRIOR! Thanks so much for the thoughts and prayers!

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

What were David's odds? Don't let the numbers mess with your mind, try thinking of it this way...Doctors have a tendency to prepare us for the worst, therefore your worst case odds are 50/50 and the tests will only improve the numbers. Remember, there are many long-term survivors here that had a worse prognosis in the beginning. You cannot control the outcome of the tests, you have a team in place to help you with that when the results are in, worry about it then. You control how you react and how they affect you in the meantime, you can overcome the fear, stay positive!! Now repeat after me...I AM STRONG...I AM A WARRIOR...I AM A SURVIVOR!!

Gary

neenee3
Posts: 28
Joined: Oct 2011

The day started off tough but got better! Positive thinking is my FRIEND! I AM STRONG... I AM A WARRIOR... I AM A SURVIVOR!! I have FRIENDS!!! :)

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

sucks, doesn't it? But you're on the right track with your doctors. I had a PET scan, bone scan, abdominal ultrasound and brain scan before my initial surgery. My surgeon wanted as much information as possible before he operated. The last thing they want is some little 'surprise'.

As for odds? They're just that - odds - which might work in Vegas but something we don't need to think about here. It's like 'statistics'. Good for research purposes but we're living in the real world. For me the best approach is not to fret about what 'might happen'. Someone once told me the worrying is like paying interest on a loan you don't have yet. Take it one step at a time. Deal with 'what is' - and let 'what might be' alone for now.

Didn't mean to preach - I know from experience how difficult this is.

Take care of you - and let us know how things go.

icemantoo's picture
icemantoo
Posts: 1515
Joined: Jan 2010

I recall a complete physical, EKG, a lot of blood work and chest xray plus a male test for bladder cancer (not fun) before my surgery 9 years ago. Each doctor and hospital may have there own variations of this. The tests serve a number of purposes such as, are you strong enough for the surgery, is there any evidence the cancer spread, and backup data if you need additional blood.

neenee3
Posts: 28
Joined: Oct 2011

Is exactly how I started this day! Glad it's not ending that way :) I'm going to try and live in the 'what is' and enjoy it! Thanks for the words of wisdom. They're so appreciated! Am I ever glad I found this forum!

neenee3
Posts: 28
Joined: Oct 2011

Got a call today that confirms I'll be having my surgery this coming Wednesday! Not really ready but I guess the sooner the better. Didn't get to get all the tests done that they wanted but will have the CT of my chest done on Monday. Made a list from all the info I gathered here. Made reservations for my husband and family that will be there. I guess "here goes nothing" ... sure hope they get it all and don't find any surprises! Thank you all for all the words of wisdom! Will keep you posted on how things are going. Thanks again for all your advise and encouragement!!!

Love & prayers to all,
Debbie

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

you're scheduled! Now suddenly the time will fly by! Good luck to you - we're all here supporting you behind the scenes! You are a warrior! And you'll do OK! Just remember that your recovery will be tough and will take time! Start walking as soon as you can stay upright for more than 5 minutes - eat numerous small meals throughout the day - and rest! Take care - and when you're up to it, please let us know how you're doing.

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Praying for a speedy, gas -free recovery! It will be over before you know it. We'll be waiting to hear from you.

Rae

neenee3
Posts: 28
Joined: Oct 2011

Well... heading down to UCLA tomorrow for surgery on Wednesday. Hoping and praying that this cancer is contained in my kidney when they take it out. I just had to say thank you once more for all the support, advice and prayers! Hope to be posting again soon!

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

Dear neenee,

Very soon tomorrow will be yesterday and you can begin to put all of this behind you. The first couple months post-op aren't fun but I am confident that you will be your old self again before you know it. Our brains have a wonderful way of "forgetting" the bad stuff rather quickly once its over, but you will have the battle scars of a warrior as a reminder. It is a small price to pay. Add my thoughts and prayers to all of those that surround and support you. I look forward to hearing from you soon!!

Your fellow survivor,

Gary

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