Got my results

2

Comments

  • DonMiller
    DonMiller Member Posts: 109
    Don’t worry about the hand

    Don’t worry about the hand assisted laprospotic surgery.  It hurts when you first wake up; it is a bit hard to breathe for about a day and you hurtin for about a week. Everyone is really nice to you which doesn’t become annoying for three or four days by which time you are starting to feel better.  The thing to watch is after about a week you feel ok, but you are really not and if you try to do too much you get exhausted.  For me this lasted a couple of weeks.

    My mistake was not getting to an oncologist sooner.  My urologist gave me the impression that while it was major surgery as long as things went well I would be fine. I found out later I had a 11cm T3a grade 3 tumor with vascular and sinus invasion.  Even then the urologist told me she “got in all” and I just needed scans as a precaution.  By the time I read up on this I was past my eligibility for a clinical trial.  Moreover there are vaccines they can make from the tumor but arrangements have to be made in advance.  I understand their effectiveness has not been proven but I think I would have tried it anyway or at least made arrangement to preserve the tumor. 

    Anyway that was 8 months ago and I am back at work and feel fine……….but it sure has changed my life. Sure I get anxious and sometimes depressed because I know I have close to a 50% chance of reoccurrence.  On the other hand, great progress is being made every day and more importantly I sure appreciate my family and friends like never before in my life.

  • MeMeJoy
    MeMeJoy Member Posts: 70
    DonMiller said:

    Don’t worry about the hand

    Don’t worry about the hand assisted laprospotic surgery.  It hurts when you first wake up; it is a bit hard to breathe for about a day and you hurtin for about a week. Everyone is really nice to you which doesn’t become annoying for three or four days by which time you are starting to feel better.  The thing to watch is after about a week you feel ok, but you are really not and if you try to do too much you get exhausted.  For me this lasted a couple of weeks.

    My mistake was not getting to an oncologist sooner.  My urologist gave me the impression that while it was major surgery as long as things went well I would be fine. I found out later I had a 11cm T3a grade 3 tumor with vascular and sinus invasion.  Even then the urologist told me she “got in all” and I just needed scans as a precaution.  By the time I read up on this I was past my eligibility for a clinical trial.  Moreover there are vaccines they can make from the tumor but arrangements have to be made in advance.  I understand their effectiveness has not been proven but I think I would have tried it anyway or at least made arrangement to preserve the tumor. 

    Anyway that was 8 months ago and I am back at work and feel fine……….but it sure has changed my life. Sure I get anxious and sometimes depressed because I know I have close to a 50% chance of reoccurrence.  On the other hand, great progress is being made every day and more importantly I sure appreciate my family and friends like never before in my life.

    Thanks! It's good to hear

    Thanks! It's good to hear from someone who has had HAL and to know that its not that bad.

    "My urologist gave me the impression that while it was major surgery as long as things went well I would be fine." This is the impression I am getting from mine as well... This may sound dumb but what are the implications of having a tumor with vascular and sinus invasion? Do you see an oncologist now?

  • MeMeJoy
    MeMeJoy Member Posts: 70

    Scared is normal whether its

    Scared is normal whether its 3 days or 3 weeks give yourself a break...this kind of news will rattle the calmist of people..praying for you to have a good surgery and recovery..and for you to get good news after..hugggss

    Thank you!

    Thanks so much! BIG Hugggsss back at'cha Wink

  • Rea
    Rea Member Posts: 28
    Hi MeMeJoy!  my hand assisted

    Hi MeMeJoy!  my hand assisted lap done last Jan 30 2013, it was an 11cm tumor, renal cell carninoma most commonly known as kidney cancer, T3A.  I was back to work after 5 weeks and had good results in my bone and CT scan last March. i am cancer free now.  i still need to do tests every 3 months.

    the recovery is quicker compare to open surgery. i still have some sharp pain on my lower incision and in my flank where the kidney and tumor was removed.  so far, it was good.  i am still awaiting what excercises i can do cause i tend to be exhausted easily. i can say i am back to normal activities, just no heavy lifting

    i pray that your surgery will be sucessful, keep up the positive attitude. everything will be ok.

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

    Thanks! It's good to hear

    Thanks! It's good to hear from someone who has had HAL and to know that its not that bad.

    "My urologist gave me the impression that while it was major surgery as long as things went well I would be fine." This is the impression I am getting from mine as well... This may sound dumb but what are the implications of having a tumor with vascular and sinus invasion? Do you see an oncologist now?

    Vascular Invasion

    They believe that a couple of the ways that kidney cancer spreads is by access to either the blood or  lymph systems (there are other ways). The difference between Stage 1/2 and 3, is mainly that the cancer has grown into the blood supply (vascular invasion), or into the adrenal gland, or outside the kidney in some other way. What comes with increases in stage is increases in chances that the cancer will spread to other parts of the body. Roughly a Stage 1 tumor has something like a <10% chance of recurrence (I'm talking about clear cell RCC) while a Stage 3 tumor the probabilty can be closer to 50% chance of it spreading to other parts of the body. They generally don't find out what the tumor has grown into until they remove the kidney and slice it up and put it under microscope and have a pathologist look at it.

    I had a Stage 3a tumor that had vascular invasion. Because my risk was higher for recurrence, I was very interested in looking into clinical drug trials. Many of these trials have a 12 week deadline that you have to meet following your nephrectomy. That's why it's important to see a medical oncologist that knows about RCC and drug trials as soon as possible just so you can get the information to consider drug trials. There's often a bunch of tests that have to be done to see if you qualify for the trial, so don't wait until the last minute if you have any interest at all.

    Hope this helps.

    Todd

  • DonMiller
    DonMiller Member Posts: 109
    Hand Assisted laproscopic surgery

    Some good advise from the folks on the board

     

    I had my surgery on October 5, 2012   11CM  T3a  Fuhrman grade 3 with sinus & venos invasion.   No symtoms  No sick days in 30 years at work.  

    The surgery was really not that bad.  I was in the hospital for 2 days.  On the first day I had some trouble breathing because of the gas and and  had some significant pain for a few days....although pain medication worked fine and I pretty much just laid on the couch and watched reruns of Law and Order & The Closer.

    I was back at work in two weeks although I got tired by the middle of the afternoon...should have taken another week off.

    My big mistake was listening to the optimistic urolgists and ultimtely passing deadlines on available clinical trials.  My only advise would be to see an oncologist before the surgery if at all possible.  There are treatments that must be arranged for before the surgery or shortly thereafter.  I did not take advantage of these.

     

    Good luck you will be fine

     

    Don 

  • MeMeJoy
    MeMeJoy Member Posts: 70
    DonMiller said:

    Hand Assisted laproscopic surgery

    Some good advise from the folks on the board

     

    I had my surgery on October 5, 2012   11CM  T3a  Fuhrman grade 3 with sinus & venos invasion.   No symtoms  No sick days in 30 years at work.  

    The surgery was really not that bad.  I was in the hospital for 2 days.  On the first day I had some trouble breathing because of the gas and and  had some significant pain for a few days....although pain medication worked fine and I pretty much just laid on the couch and watched reruns of Law and Order & The Closer.

    I was back at work in two weeks although I got tired by the middle of the afternoon...should have taken another week off.

    My big mistake was listening to the optimistic urolgists and ultimtely passing deadlines on available clinical trials.  My only advise would be to see an oncologist before the surgery if at all possible.  There are treatments that must be arranged for before the surgery or shortly thereafter.  I did not take advantage of these.

     

    Good luck you will be fine

     

    Don 

    Good advice indeed! Everyone

    Good advice indeed! Everyone on here is so helpful and respectful of one another.

    Luckily I don't have to worry about work. I work at the university but only part time and during the spring and fall when I am enrolled in class.  I am a bit worried that they may try and rush me out of the hospital though. I don't think I'd be comfortable with a 2 day stay honestly, it just doesn’t seem long enough to determine that everything is ok after they remove an organ lol

    I don't know how I feel about clinical trials....I know there are a ton of people who recommend getting involved in them and are happy that they did so, but I don't know if I feel comfortable with doing that. I don't know why exactly, maybe just because I don't like taking meds period...the thought of taking something that hasn't been proven weird’s me out lol To each their own I guess Cool

    I’ve thought about renewing my subscription to Netflix just for at least the week after my surgery lol

    Thanks again everyone!

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

    Good advice indeed! Everyone

    Good advice indeed! Everyone on here is so helpful and respectful of one another.

    Luckily I don't have to worry about work. I work at the university but only part time and during the spring and fall when I am enrolled in class.  I am a bit worried that they may try and rush me out of the hospital though. I don't think I'd be comfortable with a 2 day stay honestly, it just doesn’t seem long enough to determine that everything is ok after they remove an organ lol

    I don't know how I feel about clinical trials....I know there are a ton of people who recommend getting involved in them and are happy that they did so, but I don't know if I feel comfortable with doing that. I don't know why exactly, maybe just because I don't like taking meds period...the thought of taking something that hasn't been proven weird’s me out lol To each their own I guess Cool

    I’ve thought about renewing my subscription to Netflix just for at least the week after my surgery lol

    Thanks again everyone!

    Clinical Trials

    It's a personal decision, and if you don't feel comfortable, don't do it. We've had some very long discussions/debates on this issue. Search through and find them if you're interested. We were pretty well split. Many people don't feel comfortable with doing a drug trial and don't do them. I'm sure there are people that have done trials and aren't happy they did them too, btw. I know one for sure whom I met. He was on a trial for votrient and his cancer progressed and it turned out he was on the placebo. He wasn't happy about that. It is not an easy decision.

    I didn't want to go home after 2 days. They sent me home without even having had bowel sounds or bowel activity (which many at other hospitals say they didn't do that) and I was not happy about it. But it turned out ok. I was even able to walk up and down the stairs at my house the day I got home (but I avoided it). I had a friend stay a couple of days, but I really didn't need it. I was able to take care of myself. I had my son come by every 2-3 days to do some shopping for me or move things that I couldn't lift, etc. but for the most part I was self sufficient when I got home.

    Todd

  • MDCinSC
    MDCinSC Member Posts: 574
    Great Thread! Great responses!

    This has been very enlightening for me!  I appreciate all the candor. 

    My hand assist is two weeks from today!  Mine is, by all accounts fairly small (about 4.7 cm) and I am hoping to be back in the classroom (one day a week for four hours) in two weeks. Am I pushing it?  I sure see mixed tales here!  I'll share more as I know it, but I am doing my level best to be positive and aggressive with the recovery.

    Thanks again!

     

    Michael

  • Galrim
    Galrim Member Posts: 307
    todd121 said:

    Vascular Invasion

    They believe that a couple of the ways that kidney cancer spreads is by access to either the blood or  lymph systems (there are other ways). The difference between Stage 1/2 and 3, is mainly that the cancer has grown into the blood supply (vascular invasion), or into the adrenal gland, or outside the kidney in some other way. What comes with increases in stage is increases in chances that the cancer will spread to other parts of the body. Roughly a Stage 1 tumor has something like a <10% chance of recurrence (I'm talking about clear cell RCC) while a Stage 3 tumor the probabilty can be closer to 50% chance of it spreading to other parts of the body. They generally don't find out what the tumor has grown into until they remove the kidney and slice it up and put it under microscope and have a pathologist look at it.

    I had a Stage 3a tumor that had vascular invasion. Because my risk was higher for recurrence, I was very interested in looking into clinical drug trials. Many of these trials have a 12 week deadline that you have to meet following your nephrectomy. That's why it's important to see a medical oncologist that knows about RCC and drug trials as soon as possible just so you can get the information to consider drug trials. There's often a bunch of tests that have to be done to see if you qualify for the trial, so don't wait until the last minute if you have any interest at all.

    Hope this helps.

    Todd

    Statistics regarding recurrence

    Recurrence risk related to tumor size:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735023/

    Recurrence risk related to general prognostic factors (stage, grade etc):

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1471767/

     

    And a quote regarding the percentages you mention:

    "After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors."

     

    /G

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Galrim said:

    Statistics regarding recurrence

    Recurrence risk related to tumor size:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735023/

    Recurrence risk related to general prognostic factors (stage, grade etc):

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1471767/

     

    And a quote regarding the percentages you mention:

    "After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors."

     

    /G

     

    Statistics

    G please keep those links ready to hand for posting whenever newbies and others appear here and post misleading information about small tumors!  Of particular importance is the finding from studying a few thousand cases, that :

     

    Conclusion

    In our experience, tumor size is significantly associated with synchronous metastases and asynchronous metastases following nephrectomy. Our results suggest that risk of metastatic disease for patients with tumors <3cm is negligible.

    [Just hope we don't have to spell out what negligible means, or explain that "< "  means "smaller than".]

  • MeMeJoy
    MeMeJoy Member Posts: 70
    todd121 said:

    Clinical Trials

    It's a personal decision, and if you don't feel comfortable, don't do it. We've had some very long discussions/debates on this issue. Search through and find them if you're interested. We were pretty well split. Many people don't feel comfortable with doing a drug trial and don't do them. I'm sure there are people that have done trials and aren't happy they did them too, btw. I know one for sure whom I met. He was on a trial for votrient and his cancer progressed and it turned out he was on the placebo. He wasn't happy about that. It is not an easy decision.

    I didn't want to go home after 2 days. They sent me home without even having had bowel sounds or bowel activity (which many at other hospitals say they didn't do that) and I was not happy about it. But it turned out ok. I was even able to walk up and down the stairs at my house the day I got home (but I avoided it). I had a friend stay a couple of days, but I really didn't need it. I was able to take care of myself. I had my son come by every 2-3 days to do some shopping for me or move things that I couldn't lift, etc. but for the most part I was self sufficient when I got home.

    Todd

    Thanks!

    I can't imagine it is an easy decision...Hopefully it's not one I will have to make! But I feel that may be wishful thinking... It's good to know there are others out there going through the same emotions/issues - NOT that I would wish this on anyone! - but...you know what I mean though?? lol

    My house has a lot of stairs but I think I may just camp out in the living room for a few days :)

  • MeMeJoy
    MeMeJoy Member Posts: 70
    MDCinSC said:

    Great Thread! Great responses!

    This has been very enlightening for me!  I appreciate all the candor. 

    My hand assist is two weeks from today!  Mine is, by all accounts fairly small (about 4.7 cm) and I am hoping to be back in the classroom (one day a week for four hours) in two weeks. Am I pushing it?  I sure see mixed tales here!  I'll share more as I know it, but I am doing my level best to be positive and aggressive with the recovery.

    Thanks again!

     

    Michael

    May 9th

    I go in next week so Ill let you know lol

    My doc told me I may want to avoid driving for 2 weeks after the surgery and no heavy lifting for a month. (this is seeming more and more like a C-section every day Surprised)

    What do you teach? Or are you a student?

     

  • MeMeJoy
    MeMeJoy Member Posts: 70

    Statistics

    G please keep those links ready to hand for posting whenever newbies and others appear here and post misleading information about small tumors!  Of particular importance is the finding from studying a few thousand cases, that :

     

    Conclusion

    In our experience, tumor size is significantly associated with synchronous metastases and asynchronous metastases following nephrectomy. Our results suggest that risk of metastatic disease for patients with tumors <3cm is negligible.

    [Just hope we don't have to spell out what negligible means, or explain that "< "  means "smaller than".]

    Whats more important than the Stats

    I think its more important, when looking at stats, to see where those stats came from...

    For example, some of the info in the articles you cite was pulled from a study of patients from as far back as the 70's. As I'm sure you will agree, much has changed since then and advances occur daily. Another study cited for the article followed only 11 patients, not nearly a large enough sample size from which to draw meaningful conclusions.

    My point is, rather than blindly believing any statistic or %, one should find out how those numbers were generated. Often, articles can be recently published but simply be a compilation of old data and it is up to the reader to determine if the source is credible/relevant enough for them.

    Statistics don't lie, they simply say whatever they need to Undecided

    Sorry...I am 95% confident that I have a 50/50 love/hate relationship with statistics....

     lol

     

     

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MDCinSC said:

    Great Thread! Great responses!

    This has been very enlightening for me!  I appreciate all the candor. 

    My hand assist is two weeks from today!  Mine is, by all accounts fairly small (about 4.7 cm) and I am hoping to be back in the classroom (one day a week for four hours) in two weeks. Am I pushing it?  I sure see mixed tales here!  I'll share more as I know it, but I am doing my level best to be positive and aggressive with the recovery.

    Thanks again!

     

    Michael

    Classroom

    Michael, you'll doubtless listen to your doc's advice and pay close attention to what your body is telling you but that doesn't sound an unreasonable expectation.

    By the way, do you happen to have a GRAF gene mutation?

  • MDCinSC
    MDCinSC Member Posts: 574

    Classroom

    Michael, you'll doubtless listen to your doc's advice and pay close attention to what your body is telling you but that doesn't sound an unreasonable expectation.

    By the way, do you happen to have a GRAF gene mutation?

    ROFL

    Nope!  Just can't hold tall drinks of Lagavulin! :)

     

    I am a 66 year old college prof.  I teach in the Humanities, Communication and English!  My PhD is actually in Theatre as a historian.

     

    Not bad for a fella who was a beginning freshman when he was 46! ;)

  • MDCinSC
    MDCinSC Member Posts: 574
    MeMeJoy said:

    May 9th

    I go in next week so Ill let you know lol

    My doc told me I may want to avoid driving for 2 weeks after the surgery and no heavy lifting for a month. (this is seeming more and more like a C-section every day Surprised)

    What do you teach? Or are you a student?

     

    C-Section?

    I can't say I have much experience in that! LOL  However for ME to hav a child it would HAVE to be C-section!

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

    Thanks!

    I can't imagine it is an easy decision...Hopefully it's not one I will have to make! But I feel that may be wishful thinking... It's good to know there are others out there going through the same emotions/issues - NOT that I would wish this on anyone! - but...you know what I mean though?? lol

    My house has a lot of stairs but I think I may just camp out in the living room for a few days :)

    Stairs

    I have a large bed and very large bath en suite with 2 sinks, but on the second floor. Temporarily, I turned my bath into a combo bath/kitchen for about a month. I put a small fridge and a microwave there, and brought a few dishes, canned good, etc. upstairs so I could remain in my bedroom for the first 2-3 weeks and avoid the stairs. I arranged this before the surgery. I was glad I did this. It came in very handy until I felt like doing the stairs regularly. These kinds of appliances are so inexpensive nowadays. The $150 I spent on this was well worth it.

    Todd

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

    May 9th

    I go in next week so Ill let you know lol

    My doc told me I may want to avoid driving for 2 weeks after the surgery and no heavy lifting for a month. (this is seeming more and more like a C-section every day Surprised)

    What do you teach? Or are you a student?

     

    Driving, Standing

    As I remember my doctor said no driving for 4 weeks. Even riding in a car was uncomfortable for the first 2-3 weeks. The bouncing and shaking were painful. I don't think it's that regular driving is stressful on the body per se, I think it has more to do with what might happen if you were to get into an accident or need to respond swiftly with an energetic response to avoid something. That was my take on the advice not to drive. I think I did start driving at 3 weeks though (short trips).

    I was very glad I didn't go back to work until 6 weeks. My work involves sitting all day, and that was the most uncomfortable position for me. It put a lot of stress on the suture area. I was most comfortable standing or laying. I got tired very easily. I think I would have been ok to work 3-4 hours a day after 4 weeks, but not full time. I took a trip to Vegas (and even drove part of the way) at 3 weeks. I did ok, but rested and was careful not to overdo it. It's about a 4 hour drive each way with no traffic (but I think it took us longer because of holiday traffic) and I drove half the way each direction.

    Walking was very good for me. After 1 week I was going for walks outside and pushed myself to walk a little farther each day. I think this helped my recovery. This was based on advice I got from people here.

    Todd

  • MeMeJoy
    MeMeJoy Member Posts: 70
    MDCinSC said:

    ROFL

    Nope!  Just can't hold tall drinks of Lagavulin! :)

     

    I am a 66 year old college prof.  I teach in the Humanities, Communication and English!  My PhD is actually in Theatre as a historian.

     

    Not bad for a fella who was a beginning freshman when he was 46! ;)

    Not bad at all :)
    I'm a full

    Not bad at all :)

    I'm a full time student - finish my first bachelors next spring, and I teach supplemental instruction during the fall and spring for a prof who has also become a good friend of mine.

    Even though I haven't had the surgery yet, (come'on Thursday!) I don't think I would be able to handle all the walking around campus that was required this semester soon after. Thankfully I will finish my last final on Wednesday, so I have the whole summer for recovery!