Recovering from radical nephrectomy
Comments
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thanks iceman, i've beenicemantoo said: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
thanks iceman, i've been already influenced by your previous advice to newbies like me to take trauma of the operation seriously. Of course, as a competitive runner, I had partially been emotionally coping by telling myself how soon I was going to be back to peak condition - lance armstrong without the drugs. so you're moderating advice to me is very very needed. perhaps it comes down to listening to and respecting my body.
i guess my biggest question now is how to handle back to work. i'm a professional counselor, and so i sit around on my butt all day talking to people. not physically strenuous work to say the least (that's why i run), however i have a very busy practice along with an office setup that will require me to go up and down a flight of stairs like 8-10 times a day. as a sole proprieter, i have no sick benefits, and i am the sole provider for a family of three.the bonus points......i'll take 'em!
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Thrown to the wolvesicemantoo said: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
That was a quick initiation, huh Jack? You'll be giving those running shoes a rest for a while. Take your time recovering. You don't want to set yourself back just to get back to training. We will teach you the secret handshake soon.
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quick initiationfoxhd said:Thrown to the wolves
That was a quick initiation, huh Jack? You'll be giving those running shoes a rest for a while. Take your time recovering. You don't want to set yourself back just to get back to training. We will teach you the secret handshake soon.
thanks fox, you guys are awesome. I think the quick initiation was a real blessing. Not much time to stress about things.
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Doing well, but worried...
Well, folks it has been quite a journey in my life since having my right kidney removed. The RCC is gone according to my Doctor. Had the Surgery in August of 2010. Have had yearly check ups all the results were good no signs of RCC returning. I did have to go back and a repair done in 2012 the incision herniated and mesh had to be put in to parch me up. What worries me is this my step father had his kidnry removed last year and they told him we got it all. Now the tumor has returned and the RCC has spread to his lungs and liver. I keep thinking when will mine returned. I have read so many cases were 4 to 5 years later it returns in another area like the lungs, liver, or bladder. Mine was Stage 1 about 3cm and they tell me it was completely contained. I am also fighting with my diabetes which isn't easy either. So a little depressed from time to time. I do trust God for all my needs and if I didn't this would be a little harder to deal with each and every day. God bless all of you and thanks for sharing your thoughts.
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Doing wellJohnnyb said:Doing well, but worried...
Well, folks it has been quite a journey in my life since having my right kidney removed. The RCC is gone according to my Doctor. Had the Surgery in August of 2010. Have had yearly check ups all the results were good no signs of RCC returning. I did have to go back and a repair done in 2012 the incision herniated and mesh had to be put in to parch me up. What worries me is this my step father had his kidnry removed last year and they told him we got it all. Now the tumor has returned and the RCC has spread to his lungs and liver. I keep thinking when will mine returned. I have read so many cases were 4 to 5 years later it returns in another area like the lungs, liver, or bladder. Mine was Stage 1 about 3cm and they tell me it was completely contained. I am also fighting with my diabetes which isn't easy either. So a little depressed from time to time. I do trust God for all my needs and if I didn't this would be a little harder to deal with each and every day. God bless all of you and thanks for sharing your thoughts.
Johnny, glad to hear you're so well but sorry to hear you're feeling down. Having diabetes doesn't make it any easier for you and maybe makes you a little more vulnerable to mood changes? You'll need to be careful about lifestyle - appropriate diet and exercise etc. and you probably fully appreciate the values of meditation, prayer etc.
However, the thought you should keep in front of you is that all cases are different.
Your Stepfather's prognosis was very likely worse than yours. It's true that RCC can pay a return visit, even after very long periods, but recurrence is very much related to stage at dx/nephrectomy. I had a nephrectomy sixteen months after you had yours and although seemingly clear I had recurrence in three different locations within six months of my first op.
A couple of messages above your is one from Fox, whose story has already almost passed into legend - he's had so many unwanted boarders to deal with that it's astonishing how well he is doing. You must remember that Fox and I are older than you are (hell, I'm probably older than your Stepfather!) and we were both stage 4 and grade 4. I can't remember how large Fox's primary was ( Fox doesn't do things by halves so it's sure to have been BIG) but mine was 9 cm and the main secondary that I now have had grown from invisible to 5 cm between April and September. We could both have been expected to have return visits (both of us could very well have been dead by now but we ain't!).
You, on the the other hand, with a small tumor - mine was approx. 27 x the volume of yours (cube on 3 v cube on 9) - and stage 1, which is the best, against Fox 's and mine at 4, which is the worst, have about as good a prognosis as you could have hoped for.
Johnny, we all get a bit down at times (and some of us get very down) but, apart from feeling flat sometimes, you're feeling quite well because you are quite well and with a sensible lifestyle you could still be feeling well even at iceman's advanced age! It's extremely likely that you will never have any recurrence.
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Yep, what Wedgie saidTexas_wedge said:Doing well
Johnny, glad to hear you're so well but sorry to hear you're feeling down. Having diabetes doesn't make it any easier for you and maybe makes you a little more vulnerable to mood changes? You'll need to be careful about lifestyle - appropriate diet and exercise etc. and you probably fully appreciate the values of meditation, prayer etc.
However, the thought you should keep in front of you is that all cases are different.
Your Stepfather's prognosis was very likely worse than yours. It's true that RCC can pay a return visit, even after very long periods, but recurrence is very much related to stage at dx/nephrectomy. I had a nephrectomy sixteen months after you had yours and although seemingly clear I had recurrence in three different locations within six months of my first op.
A couple of messages above your is one from Fox, whose story has already almost passed into legend - he's had so many unwanted boarders to deal with that it's astonishing how well he is doing. You must remember that Fox and I are older than you are (hell, I'm probably older than your Stepfather!) and we were both stage 4 and grade 4. I can't remember how large Fox's primary was ( Fox doesn't do things by halves so it's sure to have been BIG) but mine was 9 cm and the main secondary that I now have had grown from invisible to 5 cm between April and September. We could both have been expected to have return visits (both of us could very well have been dead by now but we ain't!).
You, on the the other hand, with a small tumor - mine was approx. 27 x the volume of yours (cube on 3 v cube on 9) - and stage 1, which is the best, against Fox 's and mine at 4, which is the worst, have about as good a prognosis as you could have hoped for.
Johnny, we all get a bit down at times (and some of us get very down) but, apart from feeling flat sometimes, you're feeling quite well because you are quite well and with a sensible lifestyle you could still be feeling well even at iceman's advanced age! It's extremely likely that you will never have any recurrence.
Every so often I get a little down. Usually associated with pain. But I can tell my wife that I need a few hours or by tomoorow I'll have gotten over it. John, don't spend energy in a negative state. Totally unrecoverable resource. Find a way to switch gears. Then concentrate on "GOOD" aspects of having been NED. Sorry about your stepfather. I get very sorry every time I hear less than good reports. Take care of yourselves and think about doing well.
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Joining you all
Hello to you folks! Well, a first in my life sharing my experiences online. And from all I have read, truly blessed to discover this site! I am 2 weeks tomorrow from surgery to remove left kidney due to RCC tumor. A whirlwind of 20 days from discovery to removal. Still reeling and totally not knowing what to expect, as this is first surgery in my 62 years of life. And for extra spice, I suffer with Fibromyalgia, Chronic Fatigue and autoimmune issues.....whoops, what is happening! From a very vital and active happy person only 8 years or so ago (didn't lose the happy part!). So all and any advice and information will be inhaled, as I start my recovery. No report from doctor yet on where I am at, but at this point ignorance is bliss on that subject. Blessings to you all and advance thank you for any input! You have such stories, and I find hope from them.
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Still soreGale_50 said:Joining you all
Hello to you folks! Well, a first in my life sharing my experiences online. And from all I have read, truly blessed to discover this site! I am 2 weeks tomorrow from surgery to remove left kidney due to RCC tumor. A whirlwind of 20 days from discovery to removal. Still reeling and totally not knowing what to expect, as this is first surgery in my 62 years of life. And for extra spice, I suffer with Fibromyalgia, Chronic Fatigue and autoimmune issues.....whoops, what is happening! From a very vital and active happy person only 8 years or so ago (didn't lose the happy part!). So all and any advice and information will be inhaled, as I start my recovery. No report from doctor yet on where I am at, but at this point ignorance is bliss on that subject. Blessings to you all and advance thank you for any input! You have such stories, and I find hope from them.
Gail,
At 2 weeks out you are no doubt alittle sore from the initiation to our club. Definateky not fun, but each day gets a little better. It is a little hard to weigh in on your prognosis without knowing the size of your tumor. Otherwise I might say something inappropriate or sound too pessimistic or optomistic and what you want is the truth.
Icemantoo
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This ride costs 2 ticketsGale_50 said:Joining you all
Hello to you folks! Well, a first in my life sharing my experiences online. And from all I have read, truly blessed to discover this site! I am 2 weeks tomorrow from surgery to remove left kidney due to RCC tumor. A whirlwind of 20 days from discovery to removal. Still reeling and totally not knowing what to expect, as this is first surgery in my 62 years of life. And for extra spice, I suffer with Fibromyalgia, Chronic Fatigue and autoimmune issues.....whoops, what is happening! From a very vital and active happy person only 8 years or so ago (didn't lose the happy part!). So all and any advice and information will be inhaled, as I start my recovery. No report from doctor yet on where I am at, but at this point ignorance is bliss on that subject. Blessings to you all and advance thank you for any input! You have such stories, and I find hope from them.
Hello Gale. 50 or 62? Anyway, it sure is an uncertain time from discovery to surgery through recovery and looking into the future. Tell us more. We air all our laundry here. And often wear our johnnies untied with the opening in front. Some people here learn alot and become well armed in their defense. Others just need to vent and we never hear from them again. Those we worry about. Being in our 60's does bring baggage that we never planned on. But that is life. The trick is to keep smiling and keep that shot glass(disguised as a coffee cup) full of tequila. Then emptied, then filled, then emptied...you get the idea. Anyway, after a while, it is just another pia we deal with. Welcome.
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Seeker of knowledgefoxhd said:This ride costs 2 tickets
Hello Gale. 50 or 62? Anyway, it sure is an uncertain time from discovery to surgery through recovery and looking into the future. Tell us more. We air all our laundry here. And often wear our johnnies untied with the opening in front. Some people here learn alot and become well armed in their defense. Others just need to vent and we never hear from them again. Those we worry about. Being in our 60's does bring baggage that we never planned on. But that is life. The trick is to keep smiling and keep that shot glass(disguised as a coffee cup) full of tequila. Then emptied, then filled, then emptied...you get the idea. Anyway, after a while, it is just another pia we deal with. Welcome.
Hi foxhd and icemantoo! Thank you for
your responses! I would say that the shock
of what I got, vs what I expected did cause
me to vent in a panic:) But I am here to
soak up all advice and knowledge gained
from your experiences or learned in life.
So thank you. Here is all I know so far:
I insisted to my doc and rheumatologist they
run tests to figure out why I am living in chronic
pain. They found a 4cm renal cell carcinoma.
I was lucky found a wonderful surgeon, Dr
Giju Nair and he did a complete removal of
my kidney through about 8 in incision. I see
my local Dr today, but surgeon is on vacation
so I have absolutely no info on the pathology
report. I will share when I get the news. So
For now anything to help me know what to
expect as far as when I will start to feel like
"me" again mentally and physically would appreciate
. I suspect the Percocet is playing a huge role in
my depression etc. Crying a lot and that is not
me:). I am happy to be able to share with those
who KNOW this journey! Blessings to you....hope
you have some fun plan today! Gale (born in 50:)
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Welcome to the club...Gale_50 said:Seeker of knowledge
Hi foxhd and icemantoo! Thank you for
your responses! I would say that the shock
of what I got, vs what I expected did cause
me to vent in a panic:) But I am here to
soak up all advice and knowledge gained
from your experiences or learned in life.
So thank you. Here is all I know so far:
I insisted to my doc and rheumatologist they
run tests to figure out why I am living in chronic
pain. They found a 4cm renal cell carcinoma.
I was lucky found a wonderful surgeon, Dr
Giju Nair and he did a complete removal of
my kidney through about 8 in incision. I see
my local Dr today, but surgeon is on vacation
so I have absolutely no info on the pathology
report. I will share when I get the news. So
For now anything to help me know what to
expect as far as when I will start to feel like
"me" again mentally and physically would appreciate
. I suspect the Percocet is playing a huge role in
my depression etc. Crying a lot and that is not
me:). I am happy to be able to share with those
who KNOW this journey! Blessings to you....hope
you have some fun plan today! Gale (born in 50:)
Hi Gale,
Nearly everyone here has been through the whirlwind you describe and the resulting roller coaster ride of emotions that follow. Your brain goes into shock when they tell you that you have cancer and it doesn't get a chance to come to terms with it until things settle down after surgery, its all a normal part of the process of healing which IMO, takes longer mentally than it does physically. My tumor was about the same size as yours, its been 3 1/2 years for me, feeling like me again physically took several weeks, but I was also recovering from the injuries due to an accident that led to my dx, feeling like me again mentally took a few months. Talk to your doctor about how you are feeling and don't be afraid to ask for something to take the edge off, many here have done so and felt much better. At 4cm its likely that it was cancer, preparing to hear that so you don't lose focus on everything else is a good idea. Its also a good idea to have someone with you for support and another set of ears. You are going to hear about type, stage, grade, and margins from the pathology report, clear cell is the most common type, small numbers on stage and grade are best (yours could well be 1's), and clear margins means it was contained giving you the best chance at a cure with no other therapies required. Make sure you get copies of everything because more questions are going to come up later on. You'll want to ask about a follow-up schedule, but plan on routine tests and ct's for about 5 years. You have early detection on your side and at this point every reason to believe that you have decades ahead of you. Keep us posted, we'll help you through it.
Godspeed,
Gary
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Everything should be OK.
Gail,
I wanted to telll you earlier that everything would be OK before, but I did not know the size of that little buggar. Now that we know it ie 4 cm., we know that your chance for a full recovery from the surgery alone is as close to 100% as you can get. Please no roller coaster rides until next summer.
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Info to get through...thank you Gary!garym said:Welcome to the club...
Hi Gale,
Nearly everyone here has been through the whirlwind you describe and the resulting roller coaster ride of emotions that follow. Your brain goes into shock when they tell you that you have cancer and it doesn't get a chance to come to terms with it until things settle down after surgery, its all a normal part of the process of healing which IMO, takes longer mentally than it does physically. My tumor was about the same size as yours, its been 3 1/2 years for me, feeling like me again physically took several weeks, but I was also recovering from the injuries due to an accident that led to my dx, feeling like me again mentally took a few months. Talk to your doctor about how you are feeling and don't be afraid to ask for something to take the edge off, many here have done so and felt much better. At 4cm its likely that it was cancer, preparing to hear that so you don't lose focus on everything else is a good idea. Its also a good idea to have someone with you for support and another set of ears. You are going to hear about type, stage, grade, and margins from the pathology report, clear cell is the most common type, small numbers on stage and grade are best (yours could well be 1's), and clear margins means it was contained giving you the best chance at a cure with no other therapies required. Make sure you get copies of everything because more questions are going to come up later on. You'll want to ask about a follow-up schedule, but plan on routine tests and ct's for about 5 years. You have early detection on your side and at this point every reason to believe that you have decades ahead of you. Keep us posted, we'll help you through it.
Godspeed,
Gary
Thanks to you for the great overview...and I can see getting through
this will be enriched and an easier journey with this "club". Very
helpful to know what will be presented. Saw my doctor today
and he thinks I am "great" for 2 weeks out. But he did not
have path report and Urologist on vacation until Monday. In
the meantime, I will read more posts here, study a bit on internet
and practice patience:). I am taking in all the positive comments/suggestions
on this site.....again SO glad I found you all. I will be back to share my
specific findings and look forward to your take. Optimistic that I
will be ME again one day, and boy is my husband hoping for that too!
Blessings, Gale
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100% Correct Answericemantoo said:Everything should be OK.
Gail,
I wanted to telll you earlier that everything would be OK before, but I did not know the size of that little buggar. Now that we know it ie 4 cm., we know that your chance for a full recovery from the surgery alone is as close to 100% as you can get. Please no roller coaster rides until next summer.
Hi icemantoo. I can certainly keep my patient shoes on easily
until Monday with your take! Thank you...my primary doctor
is anxious to see as I heal, if this may have the bonus of
relieving my Fibro type symptoms....wouldn't that be just
a miracle? Time will tell. He mentioned a syndrome called
Paraneoplastic Syndrome seen sometimes with cancers.
Will research a bit, just all in all feeling so much more
optimistic!
Thank you.....
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Hi Gale. Don't know as muchGale_50 said:100% Correct Answer
Hi icemantoo. I can certainly keep my patient shoes on easily
until Monday with your take! Thank you...my primary doctor
is anxious to see as I heal, if this may have the bonus of
relieving my Fibro type symptoms....wouldn't that be just
a miracle? Time will tell. He mentioned a syndrome called
Paraneoplastic Syndrome seen sometimes with cancers.
Will research a bit, just all in all feeling so much more
optimistic!
Thank you.....
Hi Gale. Don't know as much as the other folks on here just wanted to let you know you are in my thoughts.!
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Thoughts are perfectcran1 said:Hi Gale. Don't know as much
Hi Gale. Don't know as much as the other folks on here just wanted to let you know you are in my thoughts.!
I see we are both new so shall learn together.....isn't it great
to have a place others are supporting you? So I thank you for
connecting with me! Sweet picture....beautiful kids:). I look forward
to checking back to see how all is going for you. Stay positive
as so many folks here will tell you....blessings to you!
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Another new club member here... Hi I'm Karen!Gale_50 said:Thoughts are perfect
I see we are both new so shall learn together.....isn't it great
to have a place others are supporting you? So I thank you for
connecting with me! Sweet picture....beautiful kids:). I look forward
to checking back to see how all is going for you. Stay positive
as so many folks here will tell you....blessings to you!
Hi Gale and all,
This is my first time posting as well, though I've been browsing around here quite a bit since January of this year.
I had a right radical nephrectomy on 2/4/13 via open 13 inch incision to the flank, just two weeks after the mass was discovered. This was so quick because it was quite large... path report came back Stage 4 RCC with a Furman grade of 2.
No evidence of mets to vena cava or lymph nodes; some nodes from chest wall adipose tissue were disected and a rib was resected and sent to pathology as well...qll negative. Chest xray clear, original and repeat of CT scan to abdomen/pelvis was negative for evidence of mets also. The reason it was Stage 4 is that it crossed the margin of gerota fascia around the kidney microscopically. My surgeon brushed this off and said the mass came out easily and appeared well contained. Renal oncologist said that he recommends investigational studies or some results on current meds that are now rolling data out, as well as CT scan (one head to toe) every 3-4 months.
Sooo... into my tenth week of recovery and just now finally feeling some energy return. I had a couple of glitches in the process.... very low blood pressure after surgery (blamed on intolerance for epidural fentanyl) that sent me to ICU for 2 days on drugs to raise my blood pressure. This was a bit touchy because I'm the nurse manager of that unit... yikes! But I guess the nurses like me because they took good care of me :-). I was in the hospital for 5 days total and then two weeks after getting home had some bleeding issues from the incision that sent me to the ER... a venous ooze that had my hemoglobin down to 8... a few stitches and back home I went after much pleading and promises to come back if needed!
The extreme fatigue as well as varying pain was a constant companion up until the 2nd-3rd week of March or so... then the pain was gone and I'm left with that 'tightness' around my right midsection that I read about from others here... numbness to the right side of my abdomen and a moderate fullness, though no hernia, to the right side. The waistline is a bit lopsided! Sounds like nothing unusual as compared to other tales. I also have noted some peculiar rt hip weakness when walking.. flexing my right leg at the hip has been a little shaky, and that is what I am working on now.. a steady gait. I'm wondering if the numbness/poor muscle tone has also affected this. Getting better though!
I'm keeping a positive attitude and encouraged by my oncologist who told me he's guestimating 70% chance that we have a cure with surgery, based on my patho report and discussion with surgeon.
Sound about right? That Stage 4 had me worried, but the grade 2 not so much.
Wonderful group of people here and since I have to join the club, I'm glad it is this one!
Karen
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Sound about right?klamart said:Another new club member here... Hi I'm Karen!
Hi Gale and all,
This is my first time posting as well, though I've been browsing around here quite a bit since January of this year.
I had a right radical nephrectomy on 2/4/13 via open 13 inch incision to the flank, just two weeks after the mass was discovered. This was so quick because it was quite large... path report came back Stage 4 RCC with a Furman grade of 2.
No evidence of mets to vena cava or lymph nodes; some nodes from chest wall adipose tissue were disected and a rib was resected and sent to pathology as well...qll negative. Chest xray clear, original and repeat of CT scan to abdomen/pelvis was negative for evidence of mets also. The reason it was Stage 4 is that it crossed the margin of gerota fascia around the kidney microscopically. My surgeon brushed this off and said the mass came out easily and appeared well contained. Renal oncologist said that he recommends investigational studies or some results on current meds that are now rolling data out, as well as CT scan (one head to toe) every 3-4 months.
Sooo... into my tenth week of recovery and just now finally feeling some energy return. I had a couple of glitches in the process.... very low blood pressure after surgery (blamed on intolerance for epidural fentanyl) that sent me to ICU for 2 days on drugs to raise my blood pressure. This was a bit touchy because I'm the nurse manager of that unit... yikes! But I guess the nurses like me because they took good care of me :-). I was in the hospital for 5 days total and then two weeks after getting home had some bleeding issues from the incision that sent me to the ER... a venous ooze that had my hemoglobin down to 8... a few stitches and back home I went after much pleading and promises to come back if needed!
The extreme fatigue as well as varying pain was a constant companion up until the 2nd-3rd week of March or so... then the pain was gone and I'm left with that 'tightness' around my right midsection that I read about from others here... numbness to the right side of my abdomen and a moderate fullness, though no hernia, to the right side. The waistline is a bit lopsided! Sounds like nothing unusual as compared to other tales. I also have noted some peculiar rt hip weakness when walking.. flexing my right leg at the hip has been a little shaky, and that is what I am working on now.. a steady gait. I'm wondering if the numbness/poor muscle tone has also affected this. Getting better though!
I'm keeping a positive attitude and encouraged by my oncologist who told me he's guestimating 70% chance that we have a cure with surgery, based on my patho report and discussion with surgeon.
Sound about right? That Stage 4 had me worried, but the grade 2 not so much.
Wonderful group of people here and since I have to join the club, I'm glad it is this one!
Karen
Yes - sounds about right to me, although you didn't mention the histology - clear cell ? A 13" incision is pretty big. Your tumor being almost perfectly spherical probably necessitated a larger open cut than the usual less bulky lesions.
It sounds as though you're handling it very sensibly and you certainly have the right connections! It's not every nurse who makes a good patient, but you seem to be fine. Although you have access to top experts, there are lots of questions that they can't answer from personal experience so do feel free to ask all you care to here and you're likely to get helpful replies from one quarter or another.
The same for Gale and other newcomers, of course - all questions welcome. Karen and Gail/Gale - both attractive names but not so frequent in the UK. Are they popular names Statesside? We seem to have a few of each on the threads but not normally a G of the windy variety! Is that an unusual spelling. {iceman: don't answer that - I don't trust your spelling at the best of times
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Welcome Karen and hello Texas!klamart said:Another new club member here... Hi I'm Karen!
Hi Gale and all,
This is my first time posting as well, though I've been browsing around here quite a bit since January of this year.
I had a right radical nephrectomy on 2/4/13 via open 13 inch incision to the flank, just two weeks after the mass was discovered. This was so quick because it was quite large... path report came back Stage 4 RCC with a Furman grade of 2.
No evidence of mets to vena cava or lymph nodes; some nodes from chest wall adipose tissue were disected and a rib was resected and sent to pathology as well...qll negative. Chest xray clear, original and repeat of CT scan to abdomen/pelvis was negative for evidence of mets also. The reason it was Stage 4 is that it crossed the margin of gerota fascia around the kidney microscopically. My surgeon brushed this off and said the mass came out easily and appeared well contained. Renal oncologist said that he recommends investigational studies or some results on current meds that are now rolling data out, as well as CT scan (one head to toe) every 3-4 months.
Sooo... into my tenth week of recovery and just now finally feeling some energy return. I had a couple of glitches in the process.... very low blood pressure after surgery (blamed on intolerance for epidural fentanyl) that sent me to ICU for 2 days on drugs to raise my blood pressure. This was a bit touchy because I'm the nurse manager of that unit... yikes! But I guess the nurses like me because they took good care of me :-). I was in the hospital for 5 days total and then two weeks after getting home had some bleeding issues from the incision that sent me to the ER... a venous ooze that had my hemoglobin down to 8... a few stitches and back home I went after much pleading and promises to come back if needed!
The extreme fatigue as well as varying pain was a constant companion up until the 2nd-3rd week of March or so... then the pain was gone and I'm left with that 'tightness' around my right midsection that I read about from others here... numbness to the right side of my abdomen and a moderate fullness, though no hernia, to the right side. The waistline is a bit lopsided! Sounds like nothing unusual as compared to other tales. I also have noted some peculiar rt hip weakness when walking.. flexing my right leg at the hip has been a little shaky, and that is what I am working on now.. a steady gait. I'm wondering if the numbness/poor muscle tone has also affected this. Getting better though!
I'm keeping a positive attitude and encouraged by my oncologist who told me he's guestimating 70% chance that we have a cure with surgery, based on my patho report and discussion with surgeon.
Sound about right? That Stage 4 had me worried, but the grade 2 not so much.
Wonderful group of people here and since I have to join the club, I'm glad it is this one!
Karen
Karen, glad you are here-wow lots of information to consider. With your knowledge I would imagine there is a good, and maybe not as good side for you as you are very aware of each detail and significance. I thank you for sharing the detail, for all here to consider. My thoughts are pretty much just that, as I am so new to this all (surg 2 wks ago)and have not received my path report. One thing I picked up on was the weakness in your hip on the surgery side..my surgery was on left side and for first 10 days or so, I had to lift that leg with hand assist when moving it in bed. I attributed it to nerve damage and now is nearly resolved. Your procedure was much more extensive so maybe this is a common thing? Hope yours improves with time as mine did. So looking forward to sharing thoughts and progress Now for the name, Gale:) that was my Dad's nickname for me. Story goes, he wanted to name me "Constant Gale". Of course Mom objected, they named me Constance and I go by Connie. So only my Dad called me Gale, and I chose that when signing up here. Glad you are here and will be sharing my pathology findings when I get them. All in all, for the original findings you had it sounds like there is a lot of positive for you, so do wish you quick recovery....you had a challenging time! Blessings, Connie
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Thanks Texas for the reply..Texas_wedge said:Sound about right?
Yes - sounds about right to me, although you didn't mention the histology - clear cell ? A 13" incision is pretty big. Your tumor being almost perfectly spherical probably necessitated a larger open cut than the usual less bulky lesions.
It sounds as though you're handling it very sensibly and you certainly have the right connections! It's not every nurse who makes a good patient, but you seem to be fine. Although you have access to top experts, there are lots of questions that they can't answer from personal experience so do feel free to ask all you care to here and you're likely to get helpful replies from one quarter or another.
The same for Gale and other newcomers, of course - all questions welcome. Karen and Gail/Gale - both attractive names but not so frequent in the UK. Are they popular names Statesside? We seem to have a few of each on the threads but not normally a G of the windy variety! Is that an unusual spelling. {iceman: don't answer that - I don't trust your spelling at the best of times
.]Thanks Texas for the reply.. my name was popular in the US during my era. I don' t hear it too much in younger generations though. I appreciate your willingness to answer questions; the problem with being a nurse is that frequently other health care providers tend to assume that I know what is going on... but of course I don't always because my specialty is limited to acute illness... recovery and long term management are foreign to me, particularly oncology. Even with my access to physicians ( and not necessarily top experts... all depends on who my HMO wants me to see) I have to advocate for what I want/need to know etc... docs are very busy people and it always pays to look after oneself.
I keep my physicians busy with questions but you're right, they don't have the personal experience that all those here have. My histology was clear cell, yes; sorry for the omission. I'm still waiting to hear what sort of options I have with investigational or other medicines and I'll likely need to read through the posts to get all the insight on those when the time comes.
Now where did a man from UK get the moniker 'Texas wedge' ? Is that a golf shot ...
Karen
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