Recovering from radical nephrectomy

Texas_wedge said:

What a story!!
Like you, I gained a great deal from reading this thread (which I found by chance by doing a Google search) before I made my first-ever post - have made one or two since then on this and other forums.

"No doubt my fitness helped me recover" - I reckon you've provided one of the best proofs of this concept that we've seen!

Glad to learn that you're doing so well and I bet Christmas is going to be a whole lot better than you could have believed just before your nephrectomy.

One question and a word of advice:-
Have you had an explanation of why you suddenly suffered such extreme blood loss and pain - it seems very unusual for a comparatively moderate malignancy (Stage 2 Grade 3)? Maybe it was a blessing in disguise since it prescipitated very fast response and also finding a really good surgeon.

Now to the advice - don't presume too much on your great fitness level. It will pay huge divdends in your recovery now but don't push your luck. If you're too macho it could set back your recovery unnecessarily. We've had several members in the past who were fairly elite athletes who bounced back too vigorously and paid a price in fatigue a few months down the line and delayed their recoveries gratuitously. For the next month or two make haste slowly. That way you'll make a better showing in that marathon. I'll be watching! Good luck with your recovery, your marathon training - LATER - and have the best Christmas ever.

garym said:

Welcome to the club...
Hi Rap,

Its been just over three years for me now, it took a motorcycle accident and a trip to the ER to find mine. Tex has given you great advice, you are obviously fit and most of your body will be like a race horse in the gate, but stick to a walk before you run program for a few weeks, you'll be glad you did when you start training again. Your last paragraph says a lot and you may find a need for more emotional releases as the healing continues, its ok for your family to be a part of that, it can be therapeutic for all of you, but feel free to come here and vent as needed, we understand. Sounds like you have 50 years or so to get used to the time when you "HAD" cancer.

Merry Christmas,

Gary

Texas_wedge said:

the rapture
That's a pretty ironic pseudonym for someone who isn't religious! (However, some of us here, like Fox and myself, may sometimes engage in eschatological speculations.)

I thought Gary was going to cue me up for raising a question that I've not yet heard asked, anywhere - about hydration.

In addition to his counsel about walking before you run, Gary usually recommends ensuring that you're fully hydrated, which is good for the healing process and for the well-being of your remaining kidney.

Plenty of fluid intake is appropriately advised in recovering from kidney surgery, which is what this thread is all about. However, for those of us for whom surgery doesn't suffice, it can be a different story and it may be important to be well enough hydrated but no more than that.

To explain: increasingly, survivors who have metastatic disease and go on to systemic drug therapy, are put on TKI drugs such as sorafenib, sunitinib, pazopanib, axitinib and, soon now, tivozanib. A major, potentially fatal, side-effect that has to be monitored is hypertension. Pazopanib frequently leads to significantly raised blood pressure and axitinib is considerably worse in this regard.

There is increasing evidence that this drug-induced hypertension is an indication that the drug is working to combat the cancer and the hypertension can be controlled by additional medication without reducing the effectiveness of the TKI drug.

For most patients, hypertension can be controlled by medication of one sort or another - ACE inhibitors, beta blockers, calcium channel blockers or other types of drug, but most patients require two or more drugs for the purpose and one class of anti-hypertensive meds is diuretics. The aim of the latter is to reduce blood volume and hence blood pressure. It seems logical, therefore, to avoid over-hydration. So, the advice to drink plenty of water may need re-thinking if you're on a drug that tends to push your blood pressure up.

A little digging found me some comments in Science Daily, back in 2000, bearing on the topic:

"Water is not just a neutral substance, and it cannot be considered a 'placebo' with regards to blood pressure," said Dr. John R. Shannon, instructor of Medicine and Pharmacology. "As physicians, we may ask our hypertensive patients if they just drank a cup of coffee or smoked a cigarette when we measure their blood pressure, but we would never think to ask if they had anything to drink in the last hour. Perhaps we should. It might make the difference in whether or not we adjust their medications."

and:

"Although further work is required to understand why water raises blood pressure in older normal subjects, the studies suggest that physicians need to be aware of water [intake] as a variable to consider in assessing blood pressure levels. In addition, water intake is a variable that needs to be controlled in short-term pharmacological studies of drugs that increase and decrease blood pressure."

Hello.

I hope I'm not too late to address this group - the lull in activity makes me wonder. I will share a bit of my experience and hope it helps someone just starting their own journey.

I am a soon-to-be 50 yr old female w/ no lifestyle risks for cancer. On Jan 3rd 2013 I had a CT scan to investigate a persistent side ache on my left side. While nothing was found to explain that issue, there was an incidental finding of RCC on my right kidney. My surgery was Jan 23rd, done as hand assist laparoscopic nephrectomy. I imagine my hospital stay was typical - no picnic, but I was filled with relief to be rid of it. I was released Jan 26th feeling remarkably well. The Rx for pain medication was never filled. I'm taking 1 Extra Strength Tylenol every 8 hrs and I'm comfortable.

To the "club members" that have contributed to this site, I thank you. In the 20 days between discovery and surgery I read and reread your stories. Your willingness to be open and sharing kept me in a positive frame of mind and prepared me for what was to come.

I am hoping to celebrate my big "5 -0" with a Zumba party.  : )  Be Happy 

N_Woods_Gal said:

Life Is Good

Hello.

I hope I'm not too late to address this group - the lull in activity makes me wonder. I will share a bit of my experience and hope it helps someone just starting their own journey.

I am a soon-to-be 50 yr old female w/ no lifestyle risks for cancer. On Jan 3rd 2013 I had a CT scan to investigate a persistent side ache on my left side. While nothing was found to explain that issue, there was an incidental finding of RCC on my right kidney. My surgery was Jan 23rd, done as hand assist laparoscopic nephrectomy. I imagine my hospital stay was typical - no picnic, but I was filled with relief to be rid of it. I was released Jan 26th feeling remarkably well. The Rx for pain medication was never filled. I'm taking 1 Extra Strength Tylenol every 8 hrs and I'm comfortable.

To the "club members" that have contributed to this site, I thank you. In the 20 days between discovery and surgery I read and reread your stories. Your willingness to be open and sharing kept me in a positive frame of mind and prepared me for what was to come.

I am hoping to celebrate my big "5 -0" with a Zumba party.  : )  Be Happy 

Hi Woodsy Gal,

and lucky you, RCC has decided to crash the party.  You can never be too late here to join, but we would prefer nobody ever need join at all of course.  Since you've already completed the initiation process (what a blast) your membership has been pre-approved, there is not much left to say except pull up a chair and share your experiences with everyone here and the new members yet to arrive.  This is a good place to come when you ned to talk to someone that understands or if you need to vent.  If you don't mind sharing some of the details from your pathology like size, stage, type, etc. the members here will be happy to help with any questions you might have going forward.  You seem to be very upbeat and positive and that is half the battle, hang on to that.  You've been reading so you probably already know that I recommend walking and water to practically everyone I greet here so I'll leave it at that.  Keep us posted.

Welcome aboard,

Gary

N_Woods_Gal said:

3 Week Mark

I'm happy to see responses and know this site is still active.

Today marks 3 weeks for my recovery. I am doing very well and know how lucky I am. I like to think I'm gaining a little strength each day. It's amazing how weak you get in such a short time. I'm drinking water like it's going out of style and walking laps in the house to the point I fear ruining the carpets. I'd much rather take a stroll outside, but it's winter here and I can't risk a fall.

In answer to Q's, the mass they removed was 4.8 cm and stage 1. Pathology results for 2 margins of fatty tissue and vascular samples came back clean. How do you describe the relief? I won't have another appt for a yr, involving the usual scans, chest Xray and labs. 

I do feel I've reached a plateau with energy. I have the Tylenol down to 2 a day, 6:30 am and 6:30 pm. I won't lie, there are times I must stay distracted or I find myself with teeth clenched. I don't like medications and hate the thought of how many in a week, month...  I am a reader and lucky to have a great stash of books.  I live in the sticks and use a hit and miss dial up connection for internet.

I mentioned an upcoming birthday - it's mid April, so I still hold hope for a "majorly modified" version of Zumba?  : )  

I had a RAD/ Neph  07/16/12 - 5.0cm/ Stage 1 Grade 1 - Clear Margins

We're both very lucky!

Just an FYI.

My Dr also recommended no follow up for 1 year. I spoke to a few other Dr's and came to the conclusion that 'for my peace of mind' I needed to be more aggressive.

I switched Dr's and am now having CT's, XRays and bloodwork every 3 months for the 1st year and then I will go to 2x/ year after that and evaluate in year 3-5.

RCC is very tricky. Don't assume anythng. Stay vigilant.

God Bless!!

Texas_wedge said:

Follow-up

I'm so glad you said that, Michael.  I was in two minds whether to make a similar comment.  I was thinking of suggesting 6-monthly, in order not to sound too alarmist but what you say is very sensible, for my money.  (Easier to say in the UK, where these things are covered by the NHS - I suppose insurance/co-pay etc issues come into play for you folks though?)

Turned 50 today....feeling blessed I made it!!

Mr. Wedge,

I'm hoping to play a round or two w you in 5, 10, 20+ years....God Bless you and all the wonderful spirits that have helped me along in my journey thus far!!

~M

Texas_wedge said:

Tee-time

I haven't put in for a ballot yet - we'll have to wait for the snow to clear!  Maybe your course is clear? (Is it on Madison Avenue by the way?)

Delighted to see a picture of you at last!

....used to be in NYC, now in Florida. 

Texas_wedge said:

the rapture
That's a pretty ironic pseudonym for someone who isn't religious! (However, some of us here, like Fox and myself, may sometimes engage in eschatological speculations.)

I thought Gary was going to cue me up for raising a question that I've not yet heard asked, anywhere - about hydration.

In addition to his counsel about walking before you run, Gary usually recommends ensuring that you're fully hydrated, which is good for the healing process and for the well-being of your remaining kidney.

Plenty of fluid intake is appropriately advised in recovering from kidney surgery, which is what this thread is all about. However, for those of us for whom surgery doesn't suffice, it can be a different story and it may be important to be well enough hydrated but no more than that.

To explain: increasingly, survivors who have metastatic disease and go on to systemic drug therapy, are put on TKI drugs such as sorafenib, sunitinib, pazopanib, axitinib and, soon now, tivozanib. A major, potentially fatal, side-effect that has to be monitored is hypertension. Pazopanib frequently leads to significantly raised blood pressure and axitinib is considerably worse in this regard.

There is increasing evidence that this drug-induced hypertension is an indication that the drug is working to combat the cancer and the hypertension can be controlled by additional medication without reducing the effectiveness of the TKI drug.

For most patients, hypertension can be controlled by medication of one sort or another - ACE inhibitors, beta blockers, calcium channel blockers or other types of drug, but most patients require two or more drugs for the purpose and one class of anti-hypertensive meds is diuretics. The aim of the latter is to reduce blood volume and hence blood pressure. It seems logical, therefore, to avoid over-hydration. So, the advice to drink plenty of water may need re-thinking if you're on a drug that tends to push your blood pressure up.

A little digging found me some comments in Science Daily, back in 2000, bearing on the topic:

"Water is not just a neutral substance, and it cannot be considered a 'placebo' with regards to blood pressure," said Dr. John R. Shannon, instructor of Medicine and Pharmacology. "As physicians, we may ask our hypertensive patients if they just drank a cup of coffee or smoked a cigarette when we measure their blood pressure, but we would never think to ask if they had anything to drink in the last hour. Perhaps we should. It might make the difference in whether or not we adjust their medications."

and:

"Although further work is required to understand why water raises blood pressure in older normal subjects, the studies suggest that physicians need to be aware of water [intake] as a variable to consider in assessing blood pressure levels. In addition, water intake is a variable that needs to be controlled in short-term pharmacological studies of drugs that increase and decrease blood pressure."

Interesting comment about too much water, as Dr. Banerji has told me over 8 years ago not drink water when thirsty and along with meals. Not to take to the standard of 8 glasses a day.  He also said too much water raises blood pressure, causes acid reflux, bloating, gas, stones, angina, headaches and a bunch of other things. I highly respect Dr. Banerji and have seen those 8 years seen many reports regarding the affects of drinking  too much water.  

Jackaroe said:

just home from hospital Friday evening

Hi All,

 

I'm a 51 year old married man with a seven year old son and two grown ones by a first marriage, and have spent hours reading much of this thread, fascinated that each person's story has something in kind and something differing than mine.  So I wanted to share my story too.  I was given the diagnosis of RCC Thursday a week ago by my urologist, and was referred to a recently moved-in urologist with a laproscopic specialty.  He saw me that day, and I was scheduled for right side radical nephrectomy using the Da Vinci just six days later.   It was overwhelming to myself and my wife, to say the least, I was told my tumour was very large (like a grapefruit) but looked well contained.  Before the surgery, I was told that the lymph nodes were probably not involved, and was given a 60-70 percent survival rate.  I just kind of shut down emotionally to it, and was really grateful that the surgery was coming so quickly.  When I did think about it, I tried to stay positive. Like a previous poster, I'm a long-distance runner, and compete in ultramarathons on mountain trails.  My longest race so far has been 62 miles.  So I figured my body was in the best possible fighting condition for a challenge like this.  

So the surgery came and went (I remember nothing of course) and, while there was a ton of pain, the surgeon seemed really happy that the tumour was "completely encapsulated," and told my wife she should stop thinking of me as a cancer patient."  My wife and I loved my medical team, from the surgeon to the nurse to the aides.  Then Thursday, the next day, things took a nasty turn.  I started having abdominal muscle convulsions, where my abdominal muscles would sieze up and would have lots of trouble releasing them.  Scary.  Also, lots of nausea.   By midafternoon, I had developed bad pain in the middle of my chest, which made breathing difficult.  My doctor became worried that I was having a heart attack or throwing a blood clot, and he was not reassured  by my EKG.  This was the low point I think.  Luckily, I clearly heard the cardiologist tell my doctor that my EKG was "normal."  Still, everybody was still worried, and I was CT scanned again (where my abdominal muscles froze up again), blood work, and my heart function monitiored through the night.  The worst parts of this was that my wife had to go home that night to care for our 7 year old son, whom neighbors were caring for, and I had to be transferred to a new unit where I didn't know any of the caregivers.  

It was a pretty awful night, but after dawn my doctor came in and told me all the evidence was negative for a cardiac event, and I could go home if I wanted.  Boy, did I!  Things have been on an uphill trend ever since.  Yesterday, my doctor called me with the pathology results, and said it was good: first, the carcinoma, though large, had not penetrated the fatty area around the kidney, and second, it was a rare form of RCC called "chromophobe," which is consdered less aggresive than the clear cell variant.  The pain is very manageable now, and it feels like I'm starting to get familar with what my new body feels like.  All in all, I am absolutely on cloud nine right now.  Sometimes just being alive and comfortable can do that.  

Jack,

You are going to have good days and not so good days. Gradually thing do get better most days. You sound like you are in excellent shape and that should help your recovery. Do not push yourself those first few weeks and months. You just had major abdominal surgery. Glad to see you made it thru the heart scare with flying colors. That ia not part of our normal initiation so you should receive a few bonus points for that.

Icemantoo