Recovering from radical nephrectomy
Comments
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Welcome to the club...therapture said:Well on my way to recovery...
First, let me start by saying I found this forum greatly helpful, and signed up last night just so I could post my story. I am a 42yr old male, very active runner, have completed several marathons and half marathons. I raced motocross for 15 years and have had some big surgeries, shattered femur, arms broken, collarbones, the typical stuff :-) I have NEVER smoked cigs, light drinker, never worked around bad chemicals, but my parents were heavy smokers until the time I left the house at 21yrs old and got married. Don't know if that has anything to do with it but still...I was basically a fit, healthy adult male with no history of cancer in our family.
On 11-27-12 I started urinating large amounts of blood. 2 hours later I was doubled over in pain, thinking I had kidney stones, I went to the ER, and an hour later after a CT scan I was given the bad news of a 7cm+ tumor on the right kidney. Devastating news to say the least. Sent home with prescriptions for pain meds (hydrocodone)and an appointment with my urologist for 11-29. After suffering the next day, still large amounts of blood in the urine, blood clots, the whole deal, I saw the doc on Friday morning and he confirmed that yes, the entire kidney needed to come out, but he was going to be out of town the following week, and scheduled surgery for 12-12. I thought I could make it until then, but again on Saturday evening I was having copius amounts of pain that the pain meds didn't even make a dent in. The pain was so bad that I would start getting full body muscle tremors/shivers/teeth chattering, followed by vomiting @2 hours after the pain set it. We took another trip to the ER and they confirmed my urine was 90% pure blood, I was dehydrated, blood salts low, etc., so they checked me into a room.
The doc came Sunday morning, and tried to start me on amicar therapy to control the bleeding, well, it did for a bit, with terrible side effects of mental confusion, nausea, and a totally hungover feeling. Then the bleeding started again profusely Sunday evening, and I told him that I was going to pursue other doctors if he could not do something sooner than December 12th. He did at that time assure me he would talk with a colleague. After consulting with 2 more urologists, we settled on a new doc to my area, that was trained in laporoscopic surgery, and he was able to schedule me for Tuesday, 12-4 surgery. I went into the OR at 1:00pm and was in recovery at 6:30, and back to my private room, doc said my vitals came right back up and had little bleeding upon the removal that there was no reason to put me into ICU. I had 11 staples from my belly button up, plus 3 smaller incisions where the tools went, for a total of 4 incisions and 22 staples. VERY sore. But daily I improved, started walking the halls on Wednesday afternoon, actually stopped taking pains meds at 8:30 on Thursday night, and was given the green light to go home late Friday afternoon.
I have continued to improve very fast, have used ZERO pain meds since leaving the hospital, and was even able to go to work on 12-10 (parts manager at auto dealership, light duty obviously) and leave when I needed to, usually around 1:00pm. I have some residual pain still, coughing or sneezing can hurt, but it's getting better daily. I saw my doc again today to get staples removed and the pathology report as follows:
Stage 2 tumor at 7.3cm, grade 3 severity, clear cell RCC. The cancer was completely contained/encapsulated within the kidney and I show no signs of any other tumors at this point. Checkups in 6 months, every 6 months for a couple years, then every year thereafter.
No doubt my fitness helped me recover, plus I got lucky and found a GREAT doctor for my surgery, and I look forward to being able to run again in a few weeks, and I plan on doing a 2013 marathon late in the year with my brother and best friend together, as my "come back challenge" and hopefully find some sponsors to donate so that I can give any proceeds to cancer research. I will run it for those that can't, for those that want to, and for those that have not survived this cancer, and I will do it with pride and honor. I was kind of done with marathons since they take so much training, but I am going to do one more as a kind of "giving the bird" to cancer. I understand this is a lifelong, life changing event, and I have already started lifestyle and dietary changes to help ensure a long life for my family, my wife, and my kids aged 8 and 13.
I just wanted to post my story so that others can see that this is not the end of the road, it can be beat, it will get better, and that you can be strong and beat this ****. I'll have to say, it has been a rough process, everything happened so fast that my emotions never really got a chance to catch up, until today, the news was so good at this point that I simply could not help myself from tear-ing up, the "race face" I have had on for my family, for the last 8 days since surgery served me well. It felt good to let it all out.
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,
Gary0 -
tumor was cutting my kidney in halfTexas_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.
Yep, stage 2 and grade 3. The blood loss and sudden onset of pain was precipitated by the tumor, as it grew medially into the ductwork of the kidney, tearing an open wound into the walls of the duct. I noticed blood in my urine and was still wondering what was going on when the pain set it. The pain was caused by the kidney being blocked with thick blood and blood clots, every heartbeat was a new spike in the pain, it literally throbbed with a level 8-10 pain. My broken femur 8 years ago, while painful, had nothing on this kind of pain, and I was surprised how intense it was. I am actually glad it did this since it sped up the process of getting surgery, and had it went vertical and not intruded into the duct, I may have gone years before we caught it, and it may have been too late. Blessings in disguise eh?
Yes, I will go easy on my recovery, I have ZERO plans for any training until a few months have gone by. Christmas with my family has taken on a whole new outlook and I think this will teach me to take nothing for granted. I am not a religious person but I certainly appreciated the thoughts (and prayers even) of my friends and family.
I have been reading here for several days, also found this site via google while I was researching my condition.0 -
thanks, unusual club to be in!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
I have been really open with my situation to all my friends, even co-workers, and I tend to make lots of jokes about it, to help me deal with it. No "everyone should feel sorry for me" attitude, that just makes other people sad/uncomfortable and promotes negative energy to me. Joking helps, but sometimes, a good cry is just needed. I am not too macho to let that happen, in the right place and time.
Thanks for the kind words and advice, I will be a regular around here for sure.
South Texas gulf coast for all my life and loving it.
Merry Christmas!0 -
Sounds familiargarym 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
My experience that put me in the hospital was Very similar. Right down to the running. Tumor size was similar. Stage 3 but to stage 4 rapidly after surgery. Obviously it was there all the time. I guess the best news was not having to wait like many others for weeks before surgery. Just don't push your recovery. I'll be 2 years in March. WOW! that's only 3 months!0 -
the rapturefoxhd said:Sounds familiar
My experience that put me in the hospital was Very similar. Right down to the running. Tumor size was similar. Stage 3 but to stage 4 rapidly after surgery. Obviously it was there all the time. I guess the best news was not having to wait like many others for weeks before surgery. Just don't push your recovery. I'll be 2 years in March. WOW! that's only 3 months!
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."0 -
Must be...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."
slippin' in my old age, either that or too much water on the brain.0 -
Tex, yes, I get that alot.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."
Tex, yes, I get that alot. That online moniker has been with me for about 15 years and has more than a religious basis. To be direct, I am now an atheist for almost 8 years, but I NEVER speak bad to religious people, as I was Christian until the age of 34. This forum however, I don't think is the proper place to discuss religion, I am very respectful of other's beliefs, as I also expect respect in turn. I am always glad to engage in mature discussion about religion, in the proper place.
Keep the kidney talk coming, I soak it up like a sponge.0 -
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
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Life will continue to be goodN_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
Not too late to join here and you're welcome. This is the biggest thread on this forum and for good reason - it's about the recovery period. Just about everyone comes through the surgery, so the recovery period is when there's need for helpful advice and a lot is learnt from comparing notes.
Your experience is very different from mine. You are doing so well on the pain front whereas it took me a month tapering off morphine. Just make sure that you don't slow your recovery by going without pain meds if you need them and don't hinder your recovery by pushing yourself too hard too soon in your recovery simply because you're feeling so good. Plenty of fluid intake and staying active, e.g. by walking, are plus points but doing anything very vigorous or violent in the next few months isn't smart.
So, you're a member now and we'll hope to hear continuing good news of your return to your 'normal' life - many of us find it's a 'new normal' but it can carry on being a good life and some even find life more precious and rewarding than ever before and I hope you will join that group too.
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Happy Birthday...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
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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? : )
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CONGRATSN_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!!
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Follow-upadman said:CONGRATS
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!!
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?)
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Turned 50 today....feeling blessed I made it!!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?)
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
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Tee-timeadman said: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
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!
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HaHa....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.
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Golf outingadman said:HaHa....
....used to be in NYC, now in Florida.
I suppose the snow isn't as deep there as in the north of Scotland at the moment?
So many good news stories of peoples' results and new treatments appearing at the moment, maybe we will get a round or two in over the next few years!
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Interesting comment about tooTexas_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.
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just home from hospital Friday eveningTexas_wedge said:Golf outing
I suppose the snow isn't as deep there as in the north of Scotland at the moment?
So many good news stories of peoples' results and new treatments appearing at the moment, maybe we will get a round or two in over the next few years!
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.0 -
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
0
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