Wobbler

todd121
todd121 Member Posts: 1,448 Member
in Kidney Cancer #1

I went to see my surgeon today for my followup and to get my pathology result from my adrenal gland. 2 hours late I get ushered into a room and a damn PA that doesn't know sh.. (you know what i mean) hands me the printout of the pathology report. I read it. I can at least understand there was RCC in my adrenal gland. Start asking her about the margins, etc. She doesn't know. (Ok. So surgeon got pulled into an emergency surgery, but still, I'd have rather come back on another day than learn this from someone that can't answer any of my questions.)

Anyways, to be fair later in the evening the surgeon called me and apologized and answered my questions.

Yes. There was a tumor in the adrenal gland. Yes it was RCC. I still don't know how this affects my staging, but honestly at this point I don't care about that. (The PA told me "yes" when I asked if this meant I was stage 4. But later I realized she's not qualified to answer this question.) Hope she's not reading this. I know she was covering for the doc and doing her best. But for me, I'd have rather been told the appointment couldn't happen and to come back next week.

So the good news was the tumor was tiny and it was all inside the adrenal gland. "Got it all". Inspected parts of the liver, IVC, and in and around the area and no signs of anything amiss. That's good.

It appears there's an argument in the oncology community about whether this is Stage 3b or Stage 4. My uncle did a Medline search and he found studies that said the prognosis for a recurrence like this 2 years out was actually not so bad - and what I mean by that is it's similar to my orginal prognosis 2 years ago.

The plan? Watch and wait. I expect they'll increase my scan frequencies again for a year (don't know for sure until I see the oncologist). The oncologist plans to unblind me from the EVEREST study to find out if I got placebo or everolimus. If I got placebo I'm eligible for another adjuvant study using pazaponib. (Would very likely pass on that...)

The worst part of this surgery is I've been having an allergic reaction to the damn glue they used and my abdomen is itching like CRAZY. I think I got some in my eye too, because I developed a badly swollen eyelid. I saw a doc today that thought all of this might be shingles, but the other docs at the surgical center disagree and say it's the glue. They say they see this alot.

More to follow.

The doc was very generous with the time off and gave me 7 weeks total. I wish I hadn't told my work a month. I just expected it to be less than the kidney thing....Still, I have doc approval for time off until March 23 and planning to take every bit of it. I've been working since I was 16 years old with no more than 2 weeks in a row off except for that damn kidney cancer 2 years ago. I'm going to rest!

Love you all. My good thoughts go out to Fox. Thinking of you my friend.

Todd

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #2
    Been thinking of you, glad you posted.

    Well a relativelly good update, all in all. I'm glad to hear you got your oncologist uncle to assist you with these grey areas, so to speak, regarding staging. I really hope you enjoy your time off. Do you have a anything fun planned?

  • dhs1963
    dhs1963 Member Posts: 513
    #3

    Todd, 

     

    The problem with the recurrance rates for you (and me) is they are not specific enough for solitary mets.  I can not find a study with sufficent number of people to see how Sarcomitoid RCC with a solitary met to the lung recurs after surgery.  I imagine you are in the same boat.

    I have talked to my Oncologist about this (relative to me), and he said that there are three possibilities:  one:  no more recurrances, two:  solitary recurrances which can be treated with surgery, and three:  full on recurrance.  The first is the best outcome.  The second should not impact my lifespan, but will require future surgieries.  I will not consider the third for these purposes.

    I imagine you are in the same situation.  I know you tried adjuvant theropy through a trial.  If you got the drug, you will go in the negagitve outcome column.  For long term survival and lifestyle, I would persure an active survailance approach.  Each clear scan reduces the likelyhood of a recurance.

    Your uncle is an oncoligist, but not an expert on RCC, which behaves somewhat different than many other cancers.  

     

    I hope this helps.

     

    Good luck!

  • APny
    APny Member Posts: 1,995 Member
    #4
    dhs1963 said:

    Todd, 

     

    The problem with the recurrance rates for you (and me) is they are not specific enough for solitary mets.  I can not find a study with sufficent number of people to see how Sarcomitoid RCC with a solitary met to the lung recurs after surgery.  I imagine you are in the same boat.

    I have talked to my Oncologist about this (relative to me), and he said that there are three possibilities:  one:  no more recurrances, two:  solitary recurrances which can be treated with surgery, and three:  full on recurrance.  The first is the best outcome.  The second should not impact my lifespan, but will require future surgieries.  I will not consider the third for these purposes.

    I imagine you are in the same situation.  I know you tried adjuvant theropy through a trial.  If you got the drug, you will go in the negagitve outcome column.  For long term survival and lifestyle, I would persure an active survailance approach.  Each clear scan reduces the likelyhood of a recurance.

    Your uncle is an oncoligist, but not an expert on RCC, which behaves somewhat different than many other cancers.  

     

    I hope this helps.

     

    Good luck!

    The good thing is that it's

    The good thing is that it's so tiny and they got it all. I think after all your working years you deserve the time off. Just relax and heal. Wishing you the best!

  • aamdsi
    aamdsi Member Posts: 284
    #5
    Am also glad

    They got it when it was little.

    Hope you actually get bored on your time off...that means you are using it "wisely"!

     

    Laurie

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #6
    Sounds pretty good.

    Take the time the Dr says you need to recover. I returned to too much work far too quickly and made matters worse than they should be.

    So, as Woody Guthrie uesed to say

    "Take it easy, but take it."

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    aamdsi said:

    Am also glad

    They got it when it was little.

    Hope you actually get bored on your time off...that means you are using it "wisely"!

     

    Laurie

    Bored

    Today was the first day I was bored. I deided it's time to start "exercising". I've been walking around the house, picking things up, dishes, etc. and driving short distances so thought it'd be ok.

    Well, I was going to walk to a coffee shop that's about 1-2 miles from home. Bad idea. I got about 1/8 of the way there and realized it was a bad idea. I was getting fatigued and starting to hurt a little. By the time I got home I was hurting pretty good. Actually, the most pain I've had since I got out of surgery. Laid on the sofa for an hour and feel better.

    So sick of TV.

    I ordered a couple of books. Started the first one and got 2 pages into it and realized I'd read it before. Life is funny.

    I was going to take myself to a movie tonight. Have decided that's not a good idea either. Like it or not, I'm going to have to do some more laying around.

    I actually got annoyed my boss and fellow employees weren't answering my emails today. That's crazy. I'm on disability. Why am I trying to work?

    Fun stuff? I'm ready for some mentally but not physically. :)

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #8
    dhs1963 said:

    Todd, 

     

    The problem with the recurrance rates for you (and me) is they are not specific enough for solitary mets.  I can not find a study with sufficent number of people to see how Sarcomitoid RCC with a solitary met to the lung recurs after surgery.  I imagine you are in the same boat.

    I have talked to my Oncologist about this (relative to me), and he said that there are three possibilities:  one:  no more recurrances, two:  solitary recurrances which can be treated with surgery, and three:  full on recurrance.  The first is the best outcome.  The second should not impact my lifespan, but will require future surgieries.  I will not consider the third for these purposes.

    I imagine you are in the same situation.  I know you tried adjuvant theropy through a trial.  If you got the drug, you will go in the negagitve outcome column.  For long term survival and lifestyle, I would persure an active survailance approach.  Each clear scan reduces the likelyhood of a recurance.

    Your uncle is an oncoligist, but not an expert on RCC, which behaves somewhat different than many other cancers.  

     

    I hope this helps.

     

    Good luck!

    True about my uncle. Plus he retired 10 years ago and went to med school 40 years ago.

    On the other hand, at least he can read the papers and understand what they are talking about. The info he gave me yesterday was based on some papers he pulled up on his medical publication database.

    I expect to find out if I got the placebo or the drug and go from there. I doubt I'd do another drug study anyways. If I considered it, I'd get 2-3 opinions again and not just go by my current oncologist. He's very pro study.

    Todd

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #9
    Footstomper said:

    Sounds pretty good.

    Take the time the Dr says you need to recover. I returned to too much work far too quickly and made matters worse than they should be.

    So, as Woody Guthrie uesed to say

    "Take it easy, but take it."

    Hi Todd,
    I always think that

    Hi Todd,

    I always think that once you start getting bored, that is a good sign that you are starting to feel better. However in your case, that does not mean that you should be doing too much. It must be frustrating for you.

    Your pathology report is a little confusing, for sure. In my books, recurrence to me would mean stage IV. But I am very uneducated in this kind of thing (I am a left sided brain kind of person and that combined with menopause brain does not contribute well to understanding or remembering medical facts!!) But it is good that it is contained to the adrenal gland.

    Now rest and take care of yourself. Enjoy the time off any way you can. I have been off work since January 8th due to carpal tunnel (had my right hand done January 8th and my left hand Feb. 5th) I am off til March 23. I was floored when they told me the return date - I thought I would be back February 23rd. I have more time off for carpal tunnel than for a nephrectomy. Obscene, isn't it? The bad news is it looks like I will be needing further hand surgery...a bone removed from each hand. I will know more next week. The way things are going, I may not be back until it is time to retire! lol. But at least I can walk greater distances and be more active than you, Todd. I feel for you. I hope you find a good book to read.

    Hugs,

    Jojo

  • Terri065
    Terri065 Member Posts: 81
    #10
    Hi Todd,
    I want you to know I

    Hi Todd,

    I want you to know I appreciate the update. Our doctor said my husband was 4b and while everyone is scared of the number 4 everything was removed when they removed the kidney and adrenal glad. My husband also past on a trial. We go back in July for CT scan. I'm trying to stay calm and go about our lives but some days are better than others. 

    Wishing you a speedy recovery, glad you have off till the 23nd.

    Theresa

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #11
    todd121 said:

    Bored

    Today was the first day I was bored. I deided it's time to start "exercising". I've been walking around the house, picking things up, dishes, etc. and driving short distances so thought it'd be ok.

    Well, I was going to walk to a coffee shop that's about 1-2 miles from home. Bad idea. I got about 1/8 of the way there and realized it was a bad idea. I was getting fatigued and starting to hurt a little. By the time I got home I was hurting pretty good. Actually, the most pain I've had since I got out of surgery. Laid on the sofa for an hour and feel better.

    So sick of TV.

    I ordered a couple of books. Started the first one and got 2 pages into it and realized I'd read it before. Life is funny.

    I was going to take myself to a movie tonight. Have decided that's not a good idea either. Like it or not, I'm going to have to do some more laying around.

    I actually got annoyed my boss and fellow employees weren't answering my emails today. That's crazy. I'm on disability. Why am I trying to work?

    Fun stuff? I'm ready for some mentally but not physically. :)

    Todd

    Luminosity

    When they allowed me to take my addled body out of hospital I was in pretty terrible shape. First I walked down the garden path to the road. Then to the corner. Then round the block. I now do about 5-6 miles teaching (that was a surprise).

    To battle boredom (and the nagging feeling that I couldnt think my way out of a paper bag) I started doing the brian training excersizes on Luminosity.com. They're pretty good at fighting the tedium of immobility.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #12
    Terri065 said:

    Hi Todd,
    I want you to know I

    Hi Todd,

    I want you to know I appreciate the update. Our doctor said my husband was 4b and while everyone is scared of the number 4 everything was removed when they removed the kidney and adrenal glad. My husband also past on a trial. We go back in July for CT scan. I'm trying to stay calm and go about our lives but some days are better than others. 

    Wishing you a speedy recovery, glad you have off till the 23nd.

    Theresa

     

    Hey Todd, sorry for what you

    Hey Todd, sorry for what you went through. Now please do not rush this healing process..you don't want adhesions or hernias ok my dear?

    If you are bored, you are welcomed to contact me for some support or bantor! HA!

    Hope you get the answers and correct treatment for you!

    Let us know how you are doing.

    Sending you a gentle hug,

    Jan

  • todd121
    todd121 Member Posts: 1,448 Member
    #13
    Jojo61 said:

    Hi Todd,
    I always think that

    Hi Todd,

    I always think that once you start getting bored, that is a good sign that you are starting to feel better. However in your case, that does not mean that you should be doing too much. It must be frustrating for you.

    Your pathology report is a little confusing, for sure. In my books, recurrence to me would mean stage IV. But I am very uneducated in this kind of thing (I am a left sided brain kind of person and that combined with menopause brain does not contribute well to understanding or remembering medical facts!!) But it is good that it is contained to the adrenal gland.

    Now rest and take care of yourself. Enjoy the time off any way you can. I have been off work since January 8th due to carpal tunnel (had my right hand done January 8th and my left hand Feb. 5th) I am off til March 23. I was floored when they told me the return date - I thought I would be back February 23rd. I have more time off for carpal tunnel than for a nephrectomy. Obscene, isn't it? The bad news is it looks like I will be needing further hand surgery...a bone removed from each hand. I will know more next week. The way things are going, I may not be back until it is time to retire! lol. But at least I can walk greater distances and be more active than you, Todd. I feel for you. I hope you find a good book to read.

    Hugs,

    Jojo

    Surgeries

    Sorry to hear about your hand surgeries Jojo. I sure hope they help!

    So we'll return to work on the same day! We should share an online cake (lower calories) on that day in celebration!

    Any incapacitation is no fun. Too much time to think has to be handled gingerly.

    Best to you and hugs,

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #14
    Terri065 said:

    Hi Todd,
    I want you to know I

    Hi Todd,

    I want you to know I appreciate the update. Our doctor said my husband was 4b and while everyone is scared of the number 4 everything was removed when they removed the kidney and adrenal glad. My husband also past on a trial. We go back in July for CT scan. I'm trying to stay calm and go about our lives but some days are better than others. 

    Wishing you a speedy recovery, glad you have off till the 23nd.

    Theresa

     

    Trial

    Do you remember which trial they offered him? What was the drug?

    Staying calm and being positive are tricky, but I think it's what we have to do.

    Thanks,

    Todd

  • Terri065
    Terri065 Member Posts: 81
    #15
    todd121 said:

    Trial

    Do you remember which trial they offered him? What was the drug?

    Staying calm and being positive are tricky, but I think it's what we have to do.

    Thanks,

    Todd

    Because Sloans Ketterings

    Because Sloans Ketterings trial is complete. He offered to find a trial but we were told that research shows that the drugs only work on actual tumors and not to prevent them. So we go back in July for a CT scan and I pray ever day for guidance. 

     

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