Newly Diagnosed, Scheduled for surgery at USC Keck Medical Center and scared as heck

tjspeeder
tjspeeder Member Posts: 11
edited July 2014 in Kidney Cancer #1

Im 44 was diagnosed with RCC in left kidney which they are having to do a Radical Nephrectomy since it is close to 7cm  in size and in the center confined to the kidney inner walls. They said a partial wasn't avaiable because it was to close to the renal artery. 

I just want to know what to expect other than the phamplet they give you, 

what are the steps after you get there, pre op and do they take you in right away and put you to sleep? 

Any help would be great, would like to know what to expect. 

 

«13

Comments

  • Djinnie
    Djinnie Member Posts: 945
    Surgery!

    Hi tj,

    I am sorry you are having to go through this, I know it is very hard news to receive. When is your surgery due? The thought of surgery is very daunting; no matter how many you have experienced. I assume from your questions you have no experience of any?

    The prep can be a little different each time. There are times I have had a pre med and other times not. I would check with your doctor; to make sure you will have time within the schedule to receive one. It will certainly help you to calm the nerves.

    The wait time from arrival at the hospital to time of surgery also varies, the nurses have to check you and prep you, here in France you have to take an iodine shower first. I can't recall if you have to do that in the States. Anyway! once they take you to theatre things move along very quickly, you will be asleep in no time at all.

    You will come around in the recovery room, you won't remember much about it. You will be hooked up to a drip with strong pain meds, also there will be a drainage tube in your surgery site. There will be a feeling of soreness and bruising, but the pain killers will dampen everything else. You may also feel some shoulder pain from the gas they have pumped into you. The amount of discomfort experienced post surgery varies for each of us. Just stay on top of the pain meds, take things slowly and give yourself time to heal. It can take some time so you will have to be patient!

    You will do just fine, all the best, let us know how things go:)

     

    Djinnie 



  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Size

    tj,

     

    Before I respond could you double check the size of your tumor? They are usually measured in cm not inches. There are a number of us with 7 cm tumors. 7 inches is very unusual.

     

    Icemantoo

  • thaxter
    thaxter Member Posts: 124
    For my radical open

    For my radical open nephrectomy last September they did a renal artery embolization the night before.  This was done with a wire inserted in the groin.  Procedure wasn't painful, but afterwards it makes your kidney kind of angry and I had a bad night.  This helps control bleeding during surgery.  I think they originally intended to do the embolization first thing in the morning followed by the nephrectomy but couldn't schedule it that way.

     

     

  • APny
    APny Member Posts: 1,995 Member
    thaxter said:

    For my radical open

    For my radical open nephrectomy last September they did a renal artery embolization the night before.  This was done with a wire inserted in the groin.  Procedure wasn't painful, but afterwards it makes your kidney kind of angry and I had a bad night.  This helps control bleeding during surgery.  I think they originally intended to do the embolization first thing in the morning followed by the nephrectomy but couldn't schedule it that way.

     

     

    Hi and so sorry you're facing

    Hi and so sorry you're facing this. I had a partial nephrectomy in March and was terrified going in. I have to say my imagination was worse than the reality. I had to shower with a special liquid soap the night before, then also the morning of surgery. Once I went in I got valium to calm me down, then surgery came pretty soon after that. One second I was in the operating room and next second waking up in recovery. I had a morphene drip that I could administer at specific times and it helped but made me nauseated. So if that should happen ask for antinausea meds. They help. I can't say it was fun but honestly, not terrible either. I wasn't in pain; more like discomfort. They had me up and walking that night. 24 hours later they disconnected the morphene drip and I took painkillers orally. One every 4 hours did the trick. I had a drain but that was no big deal. Came home on third day with the drain, and I had it in for almost a week.

    Once you're home make sure you walk for about 5 minutes every hour. Slept in my own bed but with a wedge to elevate me and a body pillow to support my left side. I was fine and slept well so I would suggest getting those before you go in for surgery. For ride home get a pillow so the seat belt doesn't dig into your incision site.

    Best of luck to you and I hope you'll be as pleasantly surprised as I was that it wasn't nearly as painful as I feared.

     

  • tjspeeder
    tjspeeder Member Posts: 11
    icemantoo said:

    Size

    tj,

     

    Before I respond could you double check the size of your tumor? They are usually measured in cm not inches. There are a number of us with 7 cm tumors. 7 inches is very unusual.

     

    Icemantoo

    apologize, yes it was about

    apologize, yes it was about 7cm the Dr told me.  

  • GSRon
    GSRon Member Posts: 1,303 Member
    APny said:

    Hi and so sorry you're facing

    Hi and so sorry you're facing this. I had a partial nephrectomy in March and was terrified going in. I have to say my imagination was worse than the reality. I had to shower with a special liquid soap the night before, then also the morning of surgery. Once I went in I got valium to calm me down, then surgery came pretty soon after that. One second I was in the operating room and next second waking up in recovery. I had a morphene drip that I could administer at specific times and it helped but made me nauseated. So if that should happen ask for antinausea meds. They help. I can't say it was fun but honestly, not terrible either. I wasn't in pain; more like discomfort. They had me up and walking that night. 24 hours later they disconnected the morphene drip and I took painkillers orally. One every 4 hours did the trick. I had a drain but that was no big deal. Came home on third day with the drain, and I had it in for almost a week.

    Once you're home make sure you walk for about 5 minutes every hour. Slept in my own bed but with a wedge to elevate me and a body pillow to support my left side. I was fine and slept well so I would suggest getting those before you go in for surgery. For ride home get a pillow so the seat belt doesn't dig into your incision site.

    Best of luck to you and I hope you'll be as pleasantly surprised as I was that it wasn't nearly as painful as I feared.

     

    Welcome to the club...  

    Welcome to the club...   Everyone here can attest to this...  The FEAR is far worse than the reality.. hope that helps..  Only some doctors do the pre-surgery ahem surgery.  They call it different things, but they tie off the blood supply to that Kidney, which does a few things.  First it shrinks the Kidney and the Tumor, plus it starts to kill them off.  This makes the surgery easier, and I suspect less bleeding and thus less chance of spreading the Cancer.  That was my hope, anyway.  For me, they did that procedure the day before the main surgery.

    The good news, if they do that pre-surgery bit, they kept me in the hospital, and I was already "plugged" in with the IV stuff...  So on surgery day, while I was getting a full body shave another Nurse snuck up behind me and slipped me the Mickey.. lights out..!  Wonderful..!!

    OK, pre-surgery, drink a LOT of water, stop when they tell you to stop...   Suggest you not wear real clothes to the hospital, I wore elastic type sweat pants and a T Shirt with a jacket in case it is cold, and slippers.. no socks needed anyway.  Trust me, as your body may swell up a bit from the surgery..  Once you wake up, drink water as soon as they let you.. keep drinking...  Then make sure you go to the bathroom as soon as you think your body wants to..  Yes you will likely still have a hose "down there"... peeing is a start.. but that first B.M. is all important.  Oh yes you will have lots of gas... let it rip..!   Then as soon as  you can, walk..  Those are the key elements, water, bathroom, and walking get you home the fastest..!

    Oh yes.. pain meds.. TAKE THEM..!  Do not try to be a Macho Man.. The drugs take forever to kick in.. the first sign of any pain, push the call button and get drugs... Then in a few days after surgery, wean yourself off of them..  some people only need Tylenol for pain..(lucky them)..

    It will take months to heal inside... regardless of how good you feel, your body will not of healed... heed this warning.. nothing heavy... or you may be sorry... time is now on your side..!

    Holler at us at any time..!

    Ron

  • tjspeeder
    tjspeeder Member Posts: 11
    I was originally diagnosed

    I was originally diagnosed out of a random ultrasound, then Dr decided to do an CT-Scan, and was sent to one doctor, I did not want to acknowledge it at first, with it being first I was told anything like that about my kidney. He looked at my ctscan and was like oh, thats bad, oh my, we have to remove it, Im sorry sir,  just dropped the bomb. His cold demeiner I was not having and ordered a second opinion from another doctor which is whom I having surgery.

    i was having very minor side ache off an on, i have no symptoms at all, all my bloodwork, urine samples have been good. All my vitals were good. So this whole RCC kidney cancer has blown me away and contradicted everything that my body feels, but I been told this is normal to have no symtoms.

    Im normally a very healthy eater, so all this news makes you think, Were did I go wrong? What did I do? What was I exposed to that caused this? Did I take soomething over time that caused this?

    Anxiety, nerves, stress and sleepless nights have followed. 

    Doctors can't tell you anything about the why, they don't know anything other than the general things that are known which isn't very helpful.

    Dr Ann Schuckman has been great so far she has been caring and has answered most of the questions I thought of to ask.  

    Surgery is scheduled this tuesday morning at USC Keck Medical Center.   

  • Djinnie
    Djinnie Member Posts: 945
    tjspeeder said:

    I was originally diagnosed

    I was originally diagnosed out of a random ultrasound, then Dr decided to do an CT-Scan, and was sent to one doctor, I did not want to acknowledge it at first, with it being first I was told anything like that about my kidney. He looked at my ctscan and was like oh, thats bad, oh my, we have to remove it, Im sorry sir,  just dropped the bomb. His cold demeiner I was not having and ordered a second opinion from another doctor which is whom I having surgery.

    i was having very minor side ache off an on, i have no symptoms at all, all my bloodwork, urine samples have been good. All my vitals were good. So this whole RCC kidney cancer has blown me away and contradicted everything that my body feels, but I been told this is normal to have no symtoms.

    Im normally a very healthy eater, so all this news makes you think, Were did I go wrong? What did I do? What was I exposed to that caused this? Did I take soomething over time that caused this?

    Anxiety, nerves, stress and sleepless nights have followed. 

    Doctors can't tell you anything about the why, they don't know anything other than the general things that are known which isn't very helpful.

    Dr Ann Schuckman has been great so far she has been caring and has answered most of the questions I thought of to ask.  

    Surgery is scheduled this tuesday morning at USC Keck Medical Center.   

    Surgery!

    All the best for tomorrow tj, at least it will soon be over, then the road to recovery:)

     

    Keep in touch once you are up to it!

     

    Djinnie

  • APny
    APny Member Posts: 1,995 Member
    Djinnie said:

    Surgery!

    All the best for tomorrow tj, at least it will soon be over, then the road to recovery:)

     

    Keep in touch once you are up to it!

     

    Djinnie

    All the best and speedy

    All the best and speedy recovery.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    APny said:

    All the best and speedy

    All the best and speedy recovery.

    Size

    Sure glad it is 7 cm rather than 7 inches. 7 inches is very, very large and the expected prognosis would not be good. 7 cm on the other hand is very manageble. 

    Now for the surgery. Being scared to heck is nothing. All of us were scared sh**less being told out of the blue that we had Kidney Cancer and that we were having major surgery out of the gate. I sure was 12 years ago.

    The surgery is not fun and there is no way to sugar coat it. It however is routine surgery and has been around for years, The Devinci was not discovered when I had my surgery and I understand that many of us have it easier with the robot. That and the fact that you are 15 years younger than I was at the time of surgery should make your recovery easier than mine. For what its worth I spent 2 days in the hospital, a week on the couch and gradually felt better each day until about 6 weeks when I started to feel "normal".

    You will probably still have some restrictions like no roller coasters untl next summer.

     

    Icemantoo

  • todd121
    todd121 Member Posts: 1,448 Member
    tjspeeder said:

    I was originally diagnosed

    I was originally diagnosed out of a random ultrasound, then Dr decided to do an CT-Scan, and was sent to one doctor, I did not want to acknowledge it at first, with it being first I was told anything like that about my kidney. He looked at my ctscan and was like oh, thats bad, oh my, we have to remove it, Im sorry sir,  just dropped the bomb. His cold demeiner I was not having and ordered a second opinion from another doctor which is whom I having surgery.

    i was having very minor side ache off an on, i have no symptoms at all, all my bloodwork, urine samples have been good. All my vitals were good. So this whole RCC kidney cancer has blown me away and contradicted everything that my body feels, but I been told this is normal to have no symtoms.

    Im normally a very healthy eater, so all this news makes you think, Were did I go wrong? What did I do? What was I exposed to that caused this? Did I take soomething over time that caused this?

    Anxiety, nerves, stress and sleepless nights have followed. 

    Doctors can't tell you anything about the why, they don't know anything other than the general things that are known which isn't very helpful.

    Dr Ann Schuckman has been great so far she has been caring and has answered most of the questions I thought of to ask.  

    Surgery is scheduled this tuesday morning at USC Keck Medical Center.   

    Surgery - RCC

    There's a wonderful RCC medical oncologist/specialist at USC named Dr. Quinn. He's great. If you want to get an opinion by someone other than a urologist/urologic oncologist (and I suggest you do when you have the pathology report in your hand and know what you've got for sure). If you have any interest in adjuvant therapy studies, he would know about them. That's drug therapy to help reduce the chances of recurrence. There's no approved therapy for this, but there are studies being done. I was Stage 3 and was keen on doing something to reduce my recurrence so I did one at City of Hope.

    If you want other opinions besides Dr. Quinn, there's Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. Both are RCC specialists. Dr. Figlin is a national leader in this field and he trained Dr. Pal.

    Regarding the surgery: There's the prep that's very similar to the prep for a colonoscopy. They will stop solid foods 2 nights before and have you on clear liquids the day before and you'll have to drink a laxative and there will be no eating or drinking after midnight the night before. They should give you a list of medications to stop/avoid or if you're supposed to keep taking medications (like blood pressure meds) they will tell you.

    My anesthesiologist called me the day before to discuss my surgery. If you have any questions, that's a good time to ask. If yours doesn't call you, he will probably visit you when you're in pre-op area. They will mark the correct side and ask you if that's the correct side. They will probably insert an IV in the preop. I was out before they even took me to the operating room.

    I'm very sensitive to narcotics and they gave me a bracelet that said that. And yet they gave me morphine anyways so I woke up vomiting. I don't know what you can do about that if you have that kind of issue. My surgery was around noon. I really didn't wake up fully until like 8pm. By that time I'd had several visitors and I barely remembered who they were or what I'd said.

    They will want you up and walking soon. First thing the next morning I walked with help to the door and back. I didn't want to walk, but they said it was important so I pushed myself. For the next several weeks I pushed myself to walk and drink lots of water. (Both are important in waking up your bowels, which evidently get quite a shock from the anesthesia and the pain meds.)

    I was a bit surprised my scar was a big as it was and that I had as many scars as I did. Mine was a laproscopic radical nephrectomy. My tumor was also like yours, in the middle of the kidney and also just under 7 cm, so I couldn't have a partial. Because it was in the middle of the kidney, they couldn't take the kidney out in pieces to preserve the tumor for pathology, so I ended up with a 6" scar and 3 smaller 1" scars. I had sort of expected a smaller scar, and hadn't expected 4 scars.

    I spent two nights in the hospital. My surgery was Monday and I went home Wednesday. I had family stay with me the first night. If you can, I would recommend that. The second night I sent my son home because it was impossible for him to sleep in my room (it was almost impossible for me to sleep in my room). I was ok the second night without family.

    The doctor gave me 6 weeks to recuperate from work. I took short term disability. I've heard of people going back earlier, but I was glad I took 6 weeks. I sit at my job (I'm a software engineer) and that was the hardest position for me those first few weeks because it puts pressure on the incision. I spent most of my time walking around my bedroom or laying down or going outside for walks those first few weeks. Do the breathing exercises. Walk. Drink plenty of water. Eat a bland diet, but get some fiber (canned fruit, prune juice, etc.). I took Senna Plus and a stool softener. It can take several days for normal bowel function to return. My surgery was Monday and it was Saturday before I had any movement.

    Watch your temperature. It's normal to run a low grade fever for a week, but if your fever spikes up over 101, if you notice any discharge or pain in the incision area, call your doctor.

    Best of luck to you on your surgery. You're at a terrific hospital. You're lucky you have good care.

    Todd

    P.S. One thing that really pissed me off with the doctors, was I was told I was Stage 1 (if I it was RCC) going into surgery and that I had an excellent prognosis. However, when my pathology report came back I found out I was Stage 3. I hadn't realized there could be that type of change to the staging when they did the pathology. Just be aware that until they do the pathology you won't really know what you are dealing with exactly. I was shocked because I was hoping it might not even be RCC (they said there was a 90% chance it was). I wish you the best. The other thing that bugged me, was the urologic oncologist desire to follow me post surgery. I believe that it's best to have a follow up with a medical oncologist post-op and have a medical oncologist follow you. They are the ones that really understand metastatic disease and treat it. There are several RCC specialists in Los Angeles. If you can, I would find one and let them follow you if you do end up having RCC.

     

  • tjspeeder
    tjspeeder Member Posts: 11
    todd121 said:

    Surgery - RCC

    There's a wonderful RCC medical oncologist/specialist at USC named Dr. Quinn. He's great. If you want to get an opinion by someone other than a urologist/urologic oncologist (and I suggest you do when you have the pathology report in your hand and know what you've got for sure). If you have any interest in adjuvant therapy studies, he would know about them. That's drug therapy to help reduce the chances of recurrence. There's no approved therapy for this, but there are studies being done. I was Stage 3 and was keen on doing something to reduce my recurrence so I did one at City of Hope.

    If you want other opinions besides Dr. Quinn, there's Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. Both are RCC specialists. Dr. Figlin is a national leader in this field and he trained Dr. Pal.

    Regarding the surgery: There's the prep that's very similar to the prep for a colonoscopy. They will stop solid foods 2 nights before and have you on clear liquids the day before and you'll have to drink a laxative and there will be no eating or drinking after midnight the night before. They should give you a list of medications to stop/avoid or if you're supposed to keep taking medications (like blood pressure meds) they will tell you.

    My anesthesiologist called me the day before to discuss my surgery. If you have any questions, that's a good time to ask. If yours doesn't call you, he will probably visit you when you're in pre-op area. They will mark the correct side and ask you if that's the correct side. They will probably insert an IV in the preop. I was out before they even took me to the operating room.

    I'm very sensitive to narcotics and they gave me a bracelet that said that. And yet they gave me morphine anyways so I woke up vomiting. I don't know what you can do about that if you have that kind of issue. My surgery was around noon. I really didn't wake up fully until like 8pm. By that time I'd had several visitors and I barely remembered who they were or what I'd said.

    They will want you up and walking soon. First thing the next morning I walked with help to the door and back. I didn't want to walk, but they said it was important so I pushed myself. For the next several weeks I pushed myself to walk and drink lots of water. (Both are important in waking up your bowels, which evidently get quite a shock from the anesthesia and the pain meds.)

    I was a bit surprised my scar was a big as it was and that I had as many scars as I did. Mine was a laproscopic radical nephrectomy. My tumor was also like yours, in the middle of the kidney and also just under 7 cm, so I couldn't have a partial. Because it was in the middle of the kidney, they couldn't take the kidney out in pieces to preserve the tumor for pathology, so I ended up with a 6" scar and 3 smaller 1" scars. I had sort of expected a smaller scar, and hadn't expected 4 scars.

    I spent two nights in the hospital. My surgery was Monday and I went home Wednesday. I had family stay with me the first night. If you can, I would recommend that. The second night I sent my son home because it was impossible for him to sleep in my room (it was almost impossible for me to sleep in my room). I was ok the second night without family.

    The doctor gave me 6 weeks to recuperate from work. I took short term disability. I've heard of people going back earlier, but I was glad I took 6 weeks. I sit at my job (I'm a software engineer) and that was the hardest position for me those first few weeks because it puts pressure on the incision. I spent most of my time walking around my bedroom or laying down or going outside for walks those first few weeks. Do the breathing exercises. Walk. Drink plenty of water. Eat a bland diet, but get some fiber (canned fruit, prune juice, etc.). I took Senna Plus and a stool softener. It can take several days for normal bowel function to return. My surgery was Monday and it was Saturday before I had any movement.

    Watch your temperature. It's normal to run a low grade fever for a week, but if your fever spikes up over 101, if you notice any discharge or pain in the incision area, call your doctor.

    Best of luck to you on your surgery. You're at a terrific hospital. You're lucky you have good care.

    Todd

    P.S. One thing that really pissed me off with the doctors, was I was told I was Stage 1 (if I it was RCC) going into surgery and that I had an excellent prognosis. However, when my pathology report came back I found out I was Stage 3. I hadn't realized there could be that type of change to the staging when they did the pathology. Just be aware that until they do the pathology you won't really know what you are dealing with exactly. I was shocked because I was hoping it might not even be RCC (they said there was a 90% chance it was). I wish you the best. The other thing that bugged me, was the urologic oncologist desire to follow me post surgery. I believe that it's best to have a follow up with a medical oncologist post-op and have a medical oncologist follow you. They are the ones that really understand metastatic disease and treat it. There are several RCC specialists in Los Angeles. If you can, I would find one and let them follow you if you do end up having RCC.

     

    Thank you, will sure follow

    Thank you, will sure follow up after surgery. 

  • GSRon
    GSRon Member Posts: 1,303 Member
    todd121 said:

    Surgery - RCC

    There's a wonderful RCC medical oncologist/specialist at USC named Dr. Quinn. He's great. If you want to get an opinion by someone other than a urologist/urologic oncologist (and I suggest you do when you have the pathology report in your hand and know what you've got for sure). If you have any interest in adjuvant therapy studies, he would know about them. That's drug therapy to help reduce the chances of recurrence. There's no approved therapy for this, but there are studies being done. I was Stage 3 and was keen on doing something to reduce my recurrence so I did one at City of Hope.

    If you want other opinions besides Dr. Quinn, there's Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. Both are RCC specialists. Dr. Figlin is a national leader in this field and he trained Dr. Pal.

    Regarding the surgery: There's the prep that's very similar to the prep for a colonoscopy. They will stop solid foods 2 nights before and have you on clear liquids the day before and you'll have to drink a laxative and there will be no eating or drinking after midnight the night before. They should give you a list of medications to stop/avoid or if you're supposed to keep taking medications (like blood pressure meds) they will tell you.

    My anesthesiologist called me the day before to discuss my surgery. If you have any questions, that's a good time to ask. If yours doesn't call you, he will probably visit you when you're in pre-op area. They will mark the correct side and ask you if that's the correct side. They will probably insert an IV in the preop. I was out before they even took me to the operating room.

    I'm very sensitive to narcotics and they gave me a bracelet that said that. And yet they gave me morphine anyways so I woke up vomiting. I don't know what you can do about that if you have that kind of issue. My surgery was around noon. I really didn't wake up fully until like 8pm. By that time I'd had several visitors and I barely remembered who they were or what I'd said.

    They will want you up and walking soon. First thing the next morning I walked with help to the door and back. I didn't want to walk, but they said it was important so I pushed myself. For the next several weeks I pushed myself to walk and drink lots of water. (Both are important in waking up your bowels, which evidently get quite a shock from the anesthesia and the pain meds.)

    I was a bit surprised my scar was a big as it was and that I had as many scars as I did. Mine was a laproscopic radical nephrectomy. My tumor was also like yours, in the middle of the kidney and also just under 7 cm, so I couldn't have a partial. Because it was in the middle of the kidney, they couldn't take the kidney out in pieces to preserve the tumor for pathology, so I ended up with a 6" scar and 3 smaller 1" scars. I had sort of expected a smaller scar, and hadn't expected 4 scars.

    I spent two nights in the hospital. My surgery was Monday and I went home Wednesday. I had family stay with me the first night. If you can, I would recommend that. The second night I sent my son home because it was impossible for him to sleep in my room (it was almost impossible for me to sleep in my room). I was ok the second night without family.

    The doctor gave me 6 weeks to recuperate from work. I took short term disability. I've heard of people going back earlier, but I was glad I took 6 weeks. I sit at my job (I'm a software engineer) and that was the hardest position for me those first few weeks because it puts pressure on the incision. I spent most of my time walking around my bedroom or laying down or going outside for walks those first few weeks. Do the breathing exercises. Walk. Drink plenty of water. Eat a bland diet, but get some fiber (canned fruit, prune juice, etc.). I took Senna Plus and a stool softener. It can take several days for normal bowel function to return. My surgery was Monday and it was Saturday before I had any movement.

    Watch your temperature. It's normal to run a low grade fever for a week, but if your fever spikes up over 101, if you notice any discharge or pain in the incision area, call your doctor.

    Best of luck to you on your surgery. You're at a terrific hospital. You're lucky you have good care.

    Todd

    P.S. One thing that really pissed me off with the doctors, was I was told I was Stage 1 (if I it was RCC) going into surgery and that I had an excellent prognosis. However, when my pathology report came back I found out I was Stage 3. I hadn't realized there could be that type of change to the staging when they did the pathology. Just be aware that until they do the pathology you won't really know what you are dealing with exactly. I was shocked because I was hoping it might not even be RCC (they said there was a 90% chance it was). I wish you the best. The other thing that bugged me, was the urologic oncologist desire to follow me post surgery. I believe that it's best to have a follow up with a medical oncologist post-op and have a medical oncologist follow you. They are the ones that really understand metastatic disease and treat it. There are several RCC specialists in Los Angeles. If you can, I would find one and let them follow you if you do end up having RCC.

     

    Most Oncologists do not want

    Most Oncologists do not want to do follow up on those that are not Stage 4.  But some will..  I think it depends on how busy they are.. lets face it,  not enough good Oncologists and there are only so many hours in the day.

    The pre-surgery measurement of 7 CM can and most likely change.  At 8 CM you would be termed Stage 3 based on size by most Pathology reports.  I see you did not like the hard facts and how it was laid out.. but it is what it is.. time to put on the boxing gloves and fight..!  True you can run away.. but that will not change things and will indeed cause bad results.  Sorry.. but we all have been there...

    I would not recommend an Adjuvant therapy trial, they have never shown any positive results, it saddens me they still do them with the same drugs over and over.. the results have never changed.  "X" percent of Stage 1 through Stage 3 patients get Mets, "X" percent never get any recurrance.  Flip a coin.. there is not way currently to know who gets what for sure.  

    With Kidney Cancer (RCC) rarely are there any symptoms in the early stages.  Usually the early stage Cancer is found by accident..  and often truly by accident.. there are a few motorcycle guys that had their Cancer found when they crashed and the doctor was looking for crash damage..   Every now and then, someone has back pain or other pain that "IF" properly looked in to turned out to be Cancer.  Often due to the vague pain symptoms people are sent home with pain meds or antibiotics.  There is currently no blood test or other standard test for Kidney Cancer.  

    Kidney Cancer is very sneaky... it does not let itself be known easily... it can reoccur at any time, or not.  There are a bunch of sub-types of Kidney Cancer, the most common is Clear Cell.  It is called Clear Cell for a reason... it does not often show up in an X Ray, especially when small.  So follow ups should include a CT Scan of the body, chest, abdomen, and pelvis areas. 

    They really do not know all the causes for Kidney Cancer, but exposure to chemicals is one known cause.  Those Viet Nam Vets exposed to Agent Orange are a prime example, same with people that worked with some other chemicals.  Diet is irrelevant to getting Kidney Cancer, but diet post surgery to preserve Kidney function is highly suggested.  Reduce sugar, salt, processed foods, and drink lots of water...  Just for starters...   There is sometimes a genetic component, but unlikely.. often those with a genetic component are very young and have bilateral tumors.

    Ron

  • db8ne1
    db8ne1 Member Posts: 142 Member
    Kudos!

    tjspeeder,

    I've got to give you credit for your persistence.  Most people don't listen to their bodies.  Unfortunately, kidney cancer is not usually diagnosed until people are Stage 4 (with mets) as there are no or very subtle symptoms that can be blown off as getting old/aches and pains, etc.  So, finding this mass at 7 cm is a blessing.

    My RCC was discovered in December 2012 when I was being scanned for mets for my Colorectal (CRC) Cancer diagnosis.  Since my kidney mass was small and my CRC was pretty advanced (Stage 3), we decided to concentrate on the CRC and deal with the kidney later.

    After 1 1/2 years and the mass continuing to grow - I finally had it removed a week ago via robotic assisted partial nephrectomy.  Fortunatley, it was in a good "spot" for a partial.  So, I can't help with the open full nephrectomy, other than to note that removing the whole kidney is an "easier" procedure for the surgeon, as there is the chance for less complications.  (The kidney is hard to operate on.  My urologist said, "Think of trying to sew an overcooked piece of broccol...").

    That said, your body will now need to get used to functioning on one kidney - so there will be an adjustment period.  I know people who have done so - and others that were born with only one kidney, so it's fine.  Just that your body will need TIME to adjust.

    As for anesthesia, I didn't have one, but my mother had surgery on the same day and same hospital (what are the chances?) for a ovarian cyst that was the size of a beach ball (benign, thank God).  They gave her an epidural to control the pain for the first two days (which are generally the worst days for pain).  You might want to consider asking your anesthesiologist for those - as they are becoming more and more common.  Plus, it helps not to have opiates that some people don't tolerate well and can cause constipation.  Just a thought.

    All the best to you.  Keep us posted!

    J

  • Champers
    Champers Member Posts: 12 Member
    I had my neph at USC/Keck!

    Ditto to what others have said about pre-op stuff. 

    I had my neph at USC 4 years ago, so things may have changed, but I was very impressed with the recovery and ICU nursing staff. Those folks are the best and the brightest, given the nature of what they deal with every day. The nurse to patient ratio is 1:1 in ICU.

    After transfering out of ICU, you'll go to a general surgery floor to continue your recovery...I was not as impressed with the nursing care there. They have a nurse to patient ratio of 1:8 or so. And there may be a long wait once you hit your call button to when a nurse shows up. It's great if you have a family member/friend with you to fetch water/ice/blankets/pillows or to escort you to the toilet instead of waiting for nursing to do so. 

    Something else to expect: USC is a teaching hospital. You will be probed, poked, prodded, and stared at by medical and nursing students, residents, interns, and doctors. You may be asked for your consent to have your records or tumor cells included in someone's latest research project. It is an old hospital, with badly needed cosmetic upgrades. It has an institutional atmosphere. 

    But, the Urology surgeons there are top-notch. Best of luck with your surgery. Post-op, be sure to walk, walk, walk! Drive those overworked nurses crazy at all hours of the day and night by walking circles around the nurses station! And, let those farts fly! Bowel sounds are one criterion for discharge, and you will really want to be discharged as soon as possible!

     

  • todd121
    todd121 Member Posts: 1,448 Member
    GSRon said:

    Most Oncologists do not want

    Most Oncologists do not want to do follow up on those that are not Stage 4.  But some will..  I think it depends on how busy they are.. lets face it,  not enough good Oncologists and there are only so many hours in the day.

    The pre-surgery measurement of 7 CM can and most likely change.  At 8 CM you would be termed Stage 3 based on size by most Pathology reports.  I see you did not like the hard facts and how it was laid out.. but it is what it is.. time to put on the boxing gloves and fight..!  True you can run away.. but that will not change things and will indeed cause bad results.  Sorry.. but we all have been there...

    I would not recommend an Adjuvant therapy trial, they have never shown any positive results, it saddens me they still do them with the same drugs over and over.. the results have never changed.  "X" percent of Stage 1 through Stage 3 patients get Mets, "X" percent never get any recurrance.  Flip a coin.. there is not way currently to know who gets what for sure.  

    With Kidney Cancer (RCC) rarely are there any symptoms in the early stages.  Usually the early stage Cancer is found by accident..  and often truly by accident.. there are a few motorcycle guys that had their Cancer found when they crashed and the doctor was looking for crash damage..   Every now and then, someone has back pain or other pain that "IF" properly looked in to turned out to be Cancer.  Often due to the vague pain symptoms people are sent home with pain meds or antibiotics.  There is currently no blood test or other standard test for Kidney Cancer.  

    Kidney Cancer is very sneaky... it does not let itself be known easily... it can reoccur at any time, or not.  There are a bunch of sub-types of Kidney Cancer, the most common is Clear Cell.  It is called Clear Cell for a reason... it does not often show up in an X Ray, especially when small.  So follow ups should include a CT Scan of the body, chest, abdomen, and pelvis areas. 

    They really do not know all the causes for Kidney Cancer, but exposure to chemicals is one known cause.  Those Viet Nam Vets exposed to Agent Orange are a prime example, same with people that worked with some other chemicals.  Diet is irrelevant to getting Kidney Cancer, but diet post surgery to preserve Kidney function is highly suggested.  Reduce sugar, salt, processed foods, and drink lots of water...  Just for starters...   There is sometimes a genetic component, but unlikely.. often those with a genetic component are very young and have bilateral tumors.

    Ron

    Differing Opinion

    I saw three medical oncologists just after my surgery and they all worked me in ASAP. Two of them (Dr. Figlin and Dr. Pal) were RCC specialists. If you have any interest at all in adjuvant therapy trials, they will want to see you ASAP (and you'll want to see them ASAP), because many of the trials require you to start within a certain number of weeks of having your nephrectomy (something like 12 weeks, but don't depend on me for that number), otherwise you won't be allowed in the trial. The reason is they are usually comparing nephrectomy + no treatment with nephrectomy + treatment over a certain time frame (say 5 years from nephrectomy) to see how effective the treatment is. I know that urologic oncologists/urologists often do follow-up, but I found the medical oncologists I saw were much better educated on where to look for mets and the different tests to needed to tell if something even was a met. For example, I had a spot on my femur which was suspicious. The urologic oncologist wasn't even going to investigate it. The medical oncologist had me get a nuclear bone scan to make sure I was negative for mets to the bones. Also, my medical oncologist was more aggressive in my followup with regards to scans. My urologic oncologist way underestimated the possibility of my getting mets (he said I was cured). The non-RCC medical oncologist put my risk at 10% (using some software tool that I later found out was just really not a very good tool), the 2 RCC specialists put it at closer to 50% (but also showed me the actual studies/data to explain why the other guys were wrong!)

    Now regarding adjuvant therapy trials...we've had some discussions about that in the past and I don't want to rehash it. Anybody can go back and search and read up on it. I'd advise talking to the doctors (RCC) about this and seeking their advice on whether to do them or not. The argument that they've proven fruitless so far, so nobody should do them, is really kind of a silly argument. The reason they do the studies is exactly because they haven't found something that works! Also, they've done a few in the past year or two using some of the new drugs that the results are not in yet. It can take up to 5 years to see the results. They do have them for other cancers and some drugs that aren't very useful in the Stage 4 case in other cancers, have been very effective as adjuvant therapy, so the investigations aren't "obviously" a waste of time.

    If I had been Stage 1 I probably wouldn't have done the study I did. However, being Stage 3 Grade 3, and having nearly a 50% chance of recurrence, I really felt I wanted to do what I could. 1 expert recommended I do the study. 1 said it was up to me and was more neutral. 1 non-RCC specialist (but a medical oncologist) said to do it. Another was more neutral. None of them recommended against it.

    My 4 cents. :)

    Best wishes,

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    Champers said:

    I had my neph at USC/Keck!

    Ditto to what others have said about pre-op stuff. 

    I had my neph at USC 4 years ago, so things may have changed, but I was very impressed with the recovery and ICU nursing staff. Those folks are the best and the brightest, given the nature of what they deal with every day. The nurse to patient ratio is 1:1 in ICU.

    After transfering out of ICU, you'll go to a general surgery floor to continue your recovery...I was not as impressed with the nursing care there. They have a nurse to patient ratio of 1:8 or so. And there may be a long wait once you hit your call button to when a nurse shows up. It's great if you have a family member/friend with you to fetch water/ice/blankets/pillows or to escort you to the toilet instead of waiting for nursing to do so. 

    Something else to expect: USC is a teaching hospital. You will be probed, poked, prodded, and stared at by medical and nursing students, residents, interns, and doctors. You may be asked for your consent to have your records or tumor cells included in someone's latest research project. It is an old hospital, with badly needed cosmetic upgrades. It has an institutional atmosphere. 

    But, the Urology surgeons there are top-notch. Best of luck with your surgery. Post-op, be sure to walk, walk, walk! Drive those overworked nurses crazy at all hours of the day and night by walking circles around the nurses station! And, let those farts fly! Bowel sounds are one criterion for discharge, and you will really want to be discharged as soon as possible!

     

    Different Experiences

    It's interesting to compare the different experiences we've all had.

    I went from surgery, to recovery (but don't even remember the recovery room) and then straight to a regular room. So I fell asleep in pre-op and woke up in a regular room. No ICU. I was at UCI, which is also a teaching hospital.

    I did get asked to be included in various studies. They use a machine to blow your stomach full of air like a balloon during the laproscopic procedure. It helps separate the layers while they work. I was asked to use a new machine (possibly). A few other things.

    One of the things that bugged me, is my surgeon sent me home even though I didn't have bowel sounds. It was not a criteria for release. I had always heard that that was a criteria to send you home and it made me nervous going home with things not working down there! Two days, and he kicked me out. It turned out fine.

    To be fair, I had to call a few times and they had a surgeon on call 24/7 and when I called with issues, they called me right back (the doctor's personal nurse, or the doctor). So they had excellent follow-up telephone support and I think they would've gotten me right back in if I had problems.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    GSRon said:

    Most Oncologists do not want

    Most Oncologists do not want to do follow up on those that are not Stage 4.  But some will..  I think it depends on how busy they are.. lets face it,  not enough good Oncologists and there are only so many hours in the day.

    The pre-surgery measurement of 7 CM can and most likely change.  At 8 CM you would be termed Stage 3 based on size by most Pathology reports.  I see you did not like the hard facts and how it was laid out.. but it is what it is.. time to put on the boxing gloves and fight..!  True you can run away.. but that will not change things and will indeed cause bad results.  Sorry.. but we all have been there...

    I would not recommend an Adjuvant therapy trial, they have never shown any positive results, it saddens me they still do them with the same drugs over and over.. the results have never changed.  "X" percent of Stage 1 through Stage 3 patients get Mets, "X" percent never get any recurrance.  Flip a coin.. there is not way currently to know who gets what for sure.  

    With Kidney Cancer (RCC) rarely are there any symptoms in the early stages.  Usually the early stage Cancer is found by accident..  and often truly by accident.. there are a few motorcycle guys that had their Cancer found when they crashed and the doctor was looking for crash damage..   Every now and then, someone has back pain or other pain that "IF" properly looked in to turned out to be Cancer.  Often due to the vague pain symptoms people are sent home with pain meds or antibiotics.  There is currently no blood test or other standard test for Kidney Cancer.  

    Kidney Cancer is very sneaky... it does not let itself be known easily... it can reoccur at any time, or not.  There are a bunch of sub-types of Kidney Cancer, the most common is Clear Cell.  It is called Clear Cell for a reason... it does not often show up in an X Ray, especially when small.  So follow ups should include a CT Scan of the body, chest, abdomen, and pelvis areas. 

    They really do not know all the causes for Kidney Cancer, but exposure to chemicals is one known cause.  Those Viet Nam Vets exposed to Agent Orange are a prime example, same with people that worked with some other chemicals.  Diet is irrelevant to getting Kidney Cancer, but diet post surgery to preserve Kidney function is highly suggested.  Reduce sugar, salt, processed foods, and drink lots of water...  Just for starters...   There is sometimes a genetic component, but unlikely.. often those with a genetic component are very young and have bilateral tumors.

    Ron

    BTW, Staging Information

    Strictly by size, >= 7cm and tumor is fully encapsulated is Stage 2. The main difference between Stage 1 and Stage 2 is the size of the tumor.

    Stage 3 has to do with whether the tumor has invaded blood supply or grown outside of the kidney proper. (Something that is by definition and very well defined, I just think we should be very accurate when telling people this information.)

    I agree with your other points, though, and that you won't know until the pathology what it is. It might not even be RCC. They can't always tell from the scan. Could be certain types of cysts, or even a different form of cancer. They thought mine might be transitional cell before my pathology report came bac, which is like bladder cancer. It can be in the bladder, ureter, or even in the kidney.

    Todd

  • aamdsi
    aamdsi Member Posts: 284
    So sorry

    Tj that you are going though this.  

    But as been said before, the worry and such leading up to the surgery was the worst.  I had an open partial in March.  As Apny pointed out and you know by know, the day of had to take a shower (I was told to use Dial soap) then be at hospital 2 hours prior.  

    When you are in your room, don't be afraid to ask for drugs!  I had a very hard time with the meds making me very sick, but they have a drug for that too.  as much as you may not want to, move as soon as they allow.  It helps in many ways, from makiing you feel like you're getting better, to easing pain and ...to get your bowels moving again.  That's important - never again will people be so interested in your bathroom doings!

    When you get home - walk.  Walk as much as you can, it really really helps ease pain and such.  I slept the 1st couple nights in a recliner.  When I did sleep in a bed, I put a pillow on the side of the incision.  Sleeping in a bed was much more comfortable after staples were out.  

    Oh, I had a small pillow to hold against the site when I sneezed or coughed - pressure there when you do either of those things, or laugh hard, helps it not be so painfaul

    love to say relax, it will alll be okay.  But please do try.  The worse will be over tomorrow evening, when you wake up.   From moment on you are on your way to a new life 8-)

    I am now 4.5 months out and although can't say it's been easy -  I just finished my first triathlon of the summer and got 2nd in my age (yes there were more than 3 people in my group).  So - you will get through this!

    Prayers to you tomorrow, and hope you let all of us know how you are doing.  We are all here for you.

     

    oh I too was at a teaching hospital - Univ. Of MIchigan.  top notch surgeons - yucky food

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Preop

    Hi TJ.  Welcome to our world, sorry about you having to be involved in all this.  I probably am writing to you a bit late considering your surgery is tomorrow.  To answer your question of what to expect tomorrow:  Arrive at the hospital at the designated time.  Usually they have people come at least 2 to 4 hours before their scheduled surgery time.  That way they can move your time up or back depending on their needs.  You will be asked to sign stuff (consents for surgery).  Wear comfortable clothes that you would want to wear home.  (Sweats).  Then you get to wear the lovely hospital gown.  You will be admitted to a staging area most likely.  The anesthesiologist will interview you, explain things, and probably do a little physical exam.  (listen to your lungs, and of course, "x" marks the spot).  My husbands anesthesiologist asked him some strange things, like name all the animals that you can that start with the letter A.  He had him list numerous things.  He wanted to check neurological mental function pre and post surgery.  It was actually kind of funny.  Nice guy that helped relax both of us.  Who would think we would be laughing?  They start an IV in your arm.  Perhaps they will move you to the operating room area next.  Then into the operating room itself.  You will be awake, as they will want you to scoot over the operating room table.  After that you won't remember a darn thing.  You also will not remember going to recovery room.  But after surgery, your first question will be "is it done?"  And of course it is.  Time seems to stand still.  Amazing phenom.  Most people do not go to the ICU.  But if you do go there it will be for some intense monitoring before they discharge you to a regular unit.  Everyone you meet will be asking you your name, birthday, and allergies.  It gets old fast, but they are being careful and doing their job correctly.  You will probably wake up with an IV or Two, a foley catheter, and a big bandage on you, perhaps a drainage tube that's small.  You might have a button that you can push to give yourself pain medications through the IV.  Whatever you need....ask.  They may give you a spirometer.  It is a little plastic device that you blow into to reach a certain predetermined airflow.  Basically, they want you to inflate your lungs post-op.  Most people post surgery breathe pretty shallow, and that's not good.  So my advice to you is to use that little device as much as they tell you to.  In the old days they made you cough.  That kind of hurts, but does work too.  My husband had a more involved surgery than what yours is hopefully.  He did really well.  Was in a chair the next day and walking after that.  He went home in a week.  Take your pain medicines, drink lots of water, walk, and make sure you get some medicine to help you "go"...as in stool softeners.  Everything is going to be okay and before you know it, you will be on the road to recovery.  We will all be thinking of you and hope that you will respond back to us once you can.  Good luck.  Sleep well.

    Annie