I'm new and nervous...

neenee3
neenee3 Member Posts: 28
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.
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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    I do not blame you for being nervous
    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
    garym Member Posts: 1,647
    Welcome aboard
    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
    BG Member Posts: 85 Member
    nervous is normal
    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
  • KatfromFlorida
    KatfromFlorida Member Posts: 66
    We have much in common
    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
    neenee3 Member Posts: 28
    Overwhelmed with gratitude!
    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
    carlkcs11 Member Posts: 11
    neenee3 said:

    Overwhelmed with gratitude!
    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 :)

    HOPE
    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
    ams123 Member Posts: 71
    Welcome
    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
  • ams123
    ams123 Member Posts: 71
    neenee3 said:

    Overwhelmed with gratitude!
    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 :)

    Lots of questions!
    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
  • BG
    BG Member Posts: 85 Member
    ams123 said:

    Welcome
    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

    davinci as well
    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
    ams123 Member Posts: 71
    BG said:

    davinci as well
    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

    No way!
    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
  • monique53
    monique53 Member Posts: 19
    BG said:

    nervous is normal
    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

    kidney removed
    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.
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    neenee3 said:

    Overwhelmed with gratitude!
    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 :)

    Go for the big city surgery
    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?
  • ripper
    ripper Member Posts: 28
    Best Wishes
    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.
  • ripper
    ripper Member Posts: 28
    BG said:

    nervous is normal
    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

    Still swollen...
    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.
  • neenee3
    neenee3 Member Posts: 28
    I'm just in awe of all the
    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
    carlkcs11 Member Posts: 11
    neenee3 said:

    I'm just in awe of all the
    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

    HOSPITAL MEALS
    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
  • BG
    BG Member Posts: 85 Member
    ripper said:

    Still swollen...
    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.

    still incision site pain
    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
  • BG
    BG Member Posts: 85 Member
    monique53 said:

    kidney removed
    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.

    same thing
    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
    BG Member Posts: 85 Member
    monique53 said:

    kidney removed
    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.

    same thing
    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
  • neenee3
    neenee3 Member Posts: 28
    Well, have my appointment
    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 :(