First follow-up - checklist of questions

Texas_wedge
Texas_wedge Member Posts: 2,798
in Kidney Cancer #1
Big day for me tomorrow.

I've been trying to prepare my Wife for the possibility of a sobering pathology report and the ramifications therefrom. At the same time she has been trying to alert me to the probable exiguousness of information that our esteemed National Health Service is likely to vouchsafe to us. She has a profound knowledge of the subject so her forecast is likely to be vindicated. This makes it all the more imperative for us to ask all the appropriate questions.

We'll be seeing the Urologist who did the op. He is superb and has produced learned papers such as one entitled "Occult transfixation of the sigmoid colon by suprapubic catheter" - I think I had one of those myself but the wheels fell off! Within the National Cancer Quality Steering Group he is Chair of the Renal Cancer Quality Performance Indicators sub-group for "Treatment of Patients with Non-Metastatic Disease" so I reckon if I can stick with him I'll be alright!

However, if not I suppose I'll need to see oncologists, radiologists, counsellors ... I'll be asking for the bottom line of the path. report, advice on diet, my current exercise programme, surveillance modalities (are there tests apart from scans that are essential/helpful ?) and their optimal frequency, relevant clinical trials and new treatments (e.g. highly intense focused ultrasound - HIFU).

What else do those who've gone before recommend? Especially, what did you regret not having thought to ask?

I'll try to retire tonight with positive thoughts - from Julian of Norwich in the 14th century: "all shall be well, and all shall be well, and all manner of thing shall be well." to the Beatles' refrain in I'm Down: "Everything's gonna be alright".

All helpful suggestions received with gratitude.

Comments

  • rae_rae
    rae_rae Member Posts: 300 Member
    #2
    Prayers
    I really have nothing to offer that you haven't already covered. My brain has turned to a gelatinous goo lately so the best I can do is offer up prayers, tell you above all else to keep your wonderful sense of humor (what's life without it?) and know we are all in this together.
    Rae
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #3
    Follow up
    I don't remember your specifics: tumor size, stage, etc. So...

    ... the first thing I noticed while reading your post is how you're talking about oncologists, trials, etc -- as if you've already been given some dire prognosis. Have you been?

    If not, then I think your biggest challenge is how you will adjust if the report is that all the cancer is gone, you have the typical 95% long-term survival rate, you just need the standard follow up scans, you have no prescribed life changes. You're preparing yourself to hear the worst; I get that. But are you also prepared to hear the best?

    And I mean that seriously, as with kidney cancer we expended so much energy, research, and thought into preparing for our surgery. When that's the end and the cancer is gone, it's jarring how anti-climactic the experience can be! Our minds have to stop running in the red zone, for the first time in a long time.

    Now, if you already know that the news is less encouraging, then you have the right questions in mind for treating any mets as they pop up. For kidney cancer, the biggest met concerns are in the lungs and bones, so a chest xray and a bone scan would be the next stop after the kidney itself has been cleared of cancer.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    Jamie1.3cm said:

    Follow up
    I don't remember your specifics: tumor size, stage, etc. So...

    ... the first thing I noticed while reading your post is how you're talking about oncologists, trials, etc -- as if you've already been given some dire prognosis. Have you been?

    If not, then I think your biggest challenge is how you will adjust if the report is that all the cancer is gone, you have the typical 95% long-term survival rate, you just need the standard follow up scans, you have no prescribed life changes. You're preparing yourself to hear the worst; I get that. But are you also prepared to hear the best?

    And I mean that seriously, as with kidney cancer we expended so much energy, research, and thought into preparing for our surgery. When that's the end and the cancer is gone, it's jarring how anti-climactic the experience can be! Our minds have to stop running in the red zone, for the first time in a long time.

    Now, if you already know that the news is less encouraging, then you have the right questions in mind for treating any mets as they pop up. For kidney cancer, the biggest met concerns are in the lungs and bones, so a chest xray and a bone scan would be the next stop after the kidney itself has been cleared of cancer.

    questions for Doctor
    I think one of the most important questions for your doctor should be if he thinks your head is staying down long enough, and if you are keeping your elbow straight.
  • NanaLou
    NanaLou Member Posts: 71
    #5
    foxhd said:

    questions for Doctor
    I think one of the most important questions for your doctor should be if he thinks your head is staying down long enough, and if you are keeping your elbow straight.

    Prayers going up
    I will be praying for good news. I can only hope you are in a better spot than I am. Keep the good attitude. It is hard at times, but the best thing we can do.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    Jamie1.3cm said:

    Follow up
    I don't remember your specifics: tumor size, stage, etc. So...

    ... the first thing I noticed while reading your post is how you're talking about oncologists, trials, etc -- as if you've already been given some dire prognosis. Have you been?

    If not, then I think your biggest challenge is how you will adjust if the report is that all the cancer is gone, you have the typical 95% long-term survival rate, you just need the standard follow up scans, you have no prescribed life changes. You're preparing yourself to hear the worst; I get that. But are you also prepared to hear the best?

    And I mean that seriously, as with kidney cancer we expended so much energy, research, and thought into preparing for our surgery. When that's the end and the cancer is gone, it's jarring how anti-climactic the experience can be! Our minds have to stop running in the red zone, for the first time in a long time.

    Now, if you already know that the news is less encouraging, then you have the right questions in mind for treating any mets as they pop up. For kidney cancer, the biggest met concerns are in the lungs and bones, so a chest xray and a bone scan would be the next stop after the kidney itself has been cleared of cancer.

    Prayers and advice
    Rae and Jamie, very many thanks for your consideration. We seem to have much the same sorts of friends, Rae, and I guess it must have something to do with golf! Being able to keep laughing is crucial, so I'll keep on with the golfing, also steering clear of Michigan and looking out for a Harley or equivalent (it's amazing how many here have had their lives saved by crashing their Harleys!).

    I had imagined that your discipline was something in the Liberal Arts, Jamie, not clinical psychology but you make an interesting point about mindset and change of expectations. I suppose I'm heavily focused on avoiding being floored by any really bad news and apprehensive about becoming too complacent as a result of feeling so well. Consequently I'm trying to retain a sense of tumour!

    I've not seen my path. report yet and, until a few hours time, my "best" information so far is 8cm. (a month or two before op.) late stage and unappetising grade. Believe me I'm not cut out to be a martyr. I'm feeling so good that the last thing I'd want to do is start suffering nasty side effects to no useful purpose. That's why I'm interested in learning more about HIFU and why I've said I want whatever Fox is having! (Incidentally, I do realise that he's a true stoic as well as having a heroic sense of humour so I'm not kidding myself that his experience on MDX-1106 is as totally blissful as he suggests.)

    If I'm about to get good news, well and good, I'll cross that bridge when I come to it. I'm sure I can fill any vacuum of preoccupation - 'Il faut cultiver mon handicap au golf' [screw the gardening - Voltaire can't have been a golfer - the Voltaire weather forecast for golfers is just for Voltaire, North Dakota.]

    Either way, I'll be intrigued enough to investigate mindfulness training and get on with Jerry's program, particularly since, as Gary has suggested it might also benefit my golf (where visualisation techniques are all the rage). While I keep on reading, I'm awaiting a new release of "There was an old lady" with embedded Alpha Wave, of course, in an extended version in which a latter-day Burl Ives has to try to make the following additional lines scan (that word again - can't escape those scans):

    "There was an old lady who swallowed a macrophage
    She swallowed the macrophage to catch the streptococcus chain
    I hear she'll live."

    [Fortunately we don't need to swallow macrophages, we just need to learn how to encourage our immune systems to get on with the job.]
  • cww71964
    cww71964 Member Posts: 97
    #7
    Texas_wedge said:

    Prayers and advice
    Rae and Jamie, very many thanks for your consideration. We seem to have much the same sorts of friends, Rae, and I guess it must have something to do with golf! Being able to keep laughing is crucial, so I'll keep on with the golfing, also steering clear of Michigan and looking out for a Harley or equivalent (it's amazing how many here have had their lives saved by crashing their Harleys!).

    I had imagined that your discipline was something in the Liberal Arts, Jamie, not clinical psychology but you make an interesting point about mindset and change of expectations. I suppose I'm heavily focused on avoiding being floored by any really bad news and apprehensive about becoming too complacent as a result of feeling so well. Consequently I'm trying to retain a sense of tumour!

    I've not seen my path. report yet and, until a few hours time, my "best" information so far is 8cm. (a month or two before op.) late stage and unappetising grade. Believe me I'm not cut out to be a martyr. I'm feeling so good that the last thing I'd want to do is start suffering nasty side effects to no useful purpose. That's why I'm interested in learning more about HIFU and why I've said I want whatever Fox is having! (Incidentally, I do realise that he's a true stoic as well as having a heroic sense of humour so I'm not kidding myself that his experience on MDX-1106 is as totally blissful as he suggests.)

    If I'm about to get good news, well and good, I'll cross that bridge when I come to it. I'm sure I can fill any vacuum of preoccupation - 'Il faut cultiver mon handicap au golf' [screw the gardening - Voltaire can't have been a golfer - the Voltaire weather forecast for golfers is just for Voltaire, North Dakota.]

    Either way, I'll be intrigued enough to investigate mindfulness training and get on with Jerry's program, particularly since, as Gary has suggested it might also benefit my golf (where visualisation techniques are all the rage). While I keep on reading, I'm awaiting a new release of "There was an old lady" with embedded Alpha Wave, of course, in an extended version in which a latter-day Burl Ives has to try to make the following additional lines scan (that word again - can't escape those scans):

    "There was an old lady who swallowed a macrophage
    She swallowed the macrophage to catch the streptococcus chain
    I hear she'll live."

    [Fortunately we don't need to swallow macrophages, we just need to learn how to encourage our immune systems to get on with the job.]

    prayers
    TW,

    My thoughts and prayers are with you today. I fully expect you to to report back with good news medically and that you will also start playing professional golf on the Senior Tour very soon!

    Best Wishes,
    Wayne
  • gwhite
    gwhite Member Posts: 18
    #8
    path reports
    Now is the winter of our discontent
    made glorious summer by these beams of light;
    and all the bad cells that lowered upon our organs,
    In the deep bosom of the feces buried.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #9
    gwhite said:

    path reports
    Now is the winter of our discontent
    made glorious summer by these beams of light;
    and all the bad cells that lowered upon our organs,
    In the deep bosom of the feces buried.

    path reports
    Not a path I would have chosen to take, particularly because I took the one less traveled by!

    [Almost a century since Robert Frost's poem!]

    I think we need to fine-tune your iambic pentameters Jerry but thanks for the sentiment.

    The beams of light are not coming from my path report but they are emanating from MAARS, for which I have to thank you yet again.

    TW

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