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

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 

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.

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 recovery.

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.   

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.

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 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

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!

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!

 

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

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