frustrated with onc

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Brenda Bricco
Brenda Bricco Member Posts: 579 Member
in Colorectal Cancer #1
My husband was diagnosed with stage lV in February, at that time we were told there was no treatment or hope. We went to the University in Madison after the 13th treatment to hear that surgery is NOT out of the question (going to see surgical oncologist August 23rd) hoping to schedule surgery. We saw his ocologist today and he said he still believes it's a long shot. I think I will be renaming him Dr.Doom because he just seems to refuse to be positive or consider that just maybe we will see a miracle. I don't want this doc to pretend that everything is okay but I can't seem to figure out why he is so negative. I mean, we have come further than he said we would, the University docs think that it's worth a try to go for the gold, why does he have to say things like "it's still a very long shot and that the surgery is a very tough surgery". NOTHING has been easy and we don't expect anything to be but it would be nice to get a little encouragement on occasion. Or am I being too sensitive???

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  • biz
    biz Member Posts: 60 Member
    #2
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    miracles
    I absolutely, positively believe in miracles! Can you find a different onc?
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #3
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    keep trying
    We can't ignore risk, but we need to find facts, get multiple opinions and do our homework. Then decide, and stay after it, making improvements where needed.

    My wife and I were turned down for her 2nd surgery on a large para-aortic lymph node target (multiple nodes conglomerated as it turned out), three times straight. She is chemo resistant and the tumor mass was too large for reliably effective, tumor killing radiation. Next month is the first oncologist's original "expiration date" from 2010.

    So we climbed the pyramid, got a friend's referral to heads of best surgical departments. Got outside opinions on radiological questions for surgery like aortic involvement, directly from the radiologist, rather than just the surgeons' 2 minute off-the-cuff CT reading in the office. Surgeon number 4 started to say "no" but was turned by the outside work however still had too many surgical preconditions that conflicted with my wife's continuous chemotherapy schedule and therapeutic nutrition. There are papers that show positive results with light, anti-metastatic chemotherapy, days or hours near, or even through, some kinds of colorectal and abdominal surgery.

    Surgeon No.5, started off scary like we were going to get turned down again, but turned out to be our dream come true - cooperative, even enthusiastic, once he saw all our data and research for the previous year. The surgery 3+ months ago, combined with continuous immunochemotherapy, (super)nutrition, and alternative adjuncts, has been very successful - all known residual macroscopic mass excised, fast recovery w/o surgical sensations after 4-6 wks, fit, no chemo sick days, declining CEA (1.8), and out of country travel w/o limitations.
  • tko683
    tko683 Member Posts: 264 Member
    #4
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    find a new doctor
    I think I would get another opinion and try to find a doctor who is more positive. My husband was also diagnosed with state 4 rectal cancer this year and we really liked our surgeon, he was blunt, and didn't paint a great picture but he also told us that there are options and treatments that can be done. So while we walked out of there scared of what was going to happen, we had some hope that there are treatments for this cancer and we just take one day at a time. It's tough but you just have to keep trying. I hope you are able to find a doctor who you both are happy with. Best wishes, Teri
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #5
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    tko683 said:

    find a new doctor
    I think I would get another opinion and try to find a doctor who is more positive. My husband was also diagnosed with state 4 rectal cancer this year and we really liked our surgeon, he was blunt, and didn't paint a great picture but he also told us that there are options and treatments that can be done. So while we walked out of there scared of what was going to happen, we had some hope that there are treatments for this cancer and we just take one day at a time. It's tough but you just have to keep trying. I hope you are able to find a doctor who you both are happy with. Best wishes, Teri

    I agree
    I am just uneasy with this doc, he seems to be well liked but he is the only one that travels to our area so there aren't many to choose from. It is really up to my husband but if I can convince to see someone else I think I will. If we drive an hour for chemo rather than 20 minutes then that is fine.
    Another thing is that the University docs said yes to go ahead with chemo and this guy said he wouldn't (even though his blood work was fine for it). I should also mention that there has been talk about how busy this weeks chemo was going to be for more than a week.(very small area for over 30 patients scheduled) One of the nurses evens told him over the phone over a week ago. Maybe I am paranoid but it just seems to me that it shouldn't matter how many patients there are scheduled one day, if they need to add another day to that clinic then get to it. He also stated that he felt that his CEA had plateaud even though he has yet to have a decrease in his CEA. I understand this guy knows what he is doing and he is the doctor but he seems to be convinced that my husband is exactly like everyone. If there is one thing I have learned it is that we are all different so I don't feel comfortable with his comment without any evidence.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
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    Brenda Bricco said:

    I agree
    I am just uneasy with this doc, he seems to be well liked but he is the only one that travels to our area so there aren't many to choose from. It is really up to my husband but if I can convince to see someone else I think I will. If we drive an hour for chemo rather than 20 minutes then that is fine.
    Another thing is that the University docs said yes to go ahead with chemo and this guy said he wouldn't (even though his blood work was fine for it). I should also mention that there has been talk about how busy this weeks chemo was going to be for more than a week.(very small area for over 30 patients scheduled) One of the nurses evens told him over the phone over a week ago. Maybe I am paranoid but it just seems to me that it shouldn't matter how many patients there are scheduled one day, if they need to add another day to that clinic then get to it. He also stated that he felt that his CEA had plateaud even though he has yet to have a decrease in his CEA. I understand this guy knows what he is doing and he is the doctor but he seems to be convinced that my husband is exactly like everyone. If there is one thing I have learned it is that we are all different so I don't feel comfortable with his comment without any evidence.

    run
    I don't like the vibes I'm feeling just by you describing this oncologist! Attitude and bedside manner is everything- why is it some doctors just don't realize that?!
    Even if this doctor's thoughts are that chemo and surgery won't cure your husband, so what- what's wrong with trying to extend life as long as possible? And time after time again, people on this board proved that their doctors' prognosis of how long they "have left" was absolutely wrong! As you know from reading this board, there are several people who have lived for many years with stage IV cancer & even some who have gone from stage IV to NED (NanaB, Scouty, dorookie are a few examples of stage IV people who are currently cancer free).

    Please urge your husband to look for another oncologist- a doctor's attitude really does affect a patient's outlook and sense of hope. Like you said- you're not expecting the doctor to be unreasonable in positiveness, but being more proactive and more positive would definitely help!

    Best wishes & I will pray for your husband and situation-
    Lisa :)
  • marqimark
    marqimark Member Posts: 242 Member
    #7
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    Long Shot
    Even if it is a long shot, it has to be better than NO shot.

    My prayers to you and your family.

    Mark

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