PET/CT results

snommintj
snommintj Member Posts: 601
edited March 2014 in Colorectal Cancer #1
Got my results today. All of my disease was either stable or smaller. There were no nodules in my left lung and two lesions from my liver weren't visible. That leaves three in my right lung one 4 cm lesion in my right liver lobe and two small lesions in my left. But I did get some alarming news. When my surgeon sent me to the oncologist, he specifically told me that all my tumors were resectable or ablatable. When I mentioned setting up an appointment with my surgeon today, my nurse practitioner looked all confused and said that she didn't think I was ever going to have any more surgery, and that I was going to be on chemo for the rest of my life. Then I looked all confused and said that's not what the surgeon told me. So she looked up the surgeons notes and he clearly stated in his notes that I was to have 3-4 round of chemo so that he could resect or ablate all the tumors. So she set up an appointment for me to meet with the surgeon. She then said to not get my hopes up because she didn't think I was a surgery candidate. She then got the oncologist to come in and confirm her diagnosis. He waffled and said he would let the surgeon make the call. These are the same Drs that have ben treating me from the beginning and I have seen them every two weeks since june. Each time we've spoken about my upcoming surgery. They both go on vacation tomorrow so I'm gonna chalk todays visit up to them not thinking clearly. Now I have to wait until monday to meet with the surgeon. If he tells me I'm not a surgical candidate I'm gonna be angry. Especially since he was so confident in our last visit. The last thing he said to me was, "let's get it stable, so there aren't any microscopic tumors I might miss. I'll get the rest out!". I now have 5 fewer tumors, no new ones and my oncologist is saying I'm not a candidate, what an ****. It's my birthday saturday, I guess she just wanted me to have something to worry about.

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    That is the PITS! They need to get their stories straight!!!!!!
    Keep in mind that oncologists tend to be pessimists. And, they are NOT surgeons!!!! So, don't take what she says completely to heart...

    Happy early birthday!!!! We leos are strong, proud, and really good at roaring when we don't get our way!!! (rofl!)

    Hugs, Kathi
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Doctors?
    John

    Medical incompetence abounds these days...it would be nice if they could stick to one side or the other.

    I can completely understand how you would be hot under the collar - you feel like they misled or betrayed you.

    I hope that you are indeed a candidate for a surgery or ablation - I've watched your story and posted a couple of times. Your case is very interesting to me and since you got it at such a young age, 34 wasn't it? I was about 38 but it took 5 more years till I was 43 to get it diagnosed - doctor thought it was hemhrroids - medical incompetenece then and it was been 5+ years of pure fighting and still counting.

    I'm looking at lung surgery too, had RFA done on my liver.

    I'm interested in what your surgeon has to say and look forward to that post.

    Take it EZ
    -Craig

    And early Happy Birthday to you! I know you'll make it a good one.
  • lizzydavis
    lizzydavis Member Posts: 893
    John,
    It really is

    John,

    It really is frustrating when professionals make mistakes and do not know the answers we need to hear. Please do not let them steal your joy today or on your birthday. Keep positive thoughts.

    As Lance says, Unity is Strength, Information is Power, and Attitude is Everything.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    that makes me angry to hear!
    Hi John,

    That makes me angry for you. The nurse is spouting off too much when she should keep her mouth shut! Wait until you see the surgeon & hopefully everything will be as he talked about being before and you can have the surgery.
    Congratulations on good scan news- that's definitely good to hear!

    You take care & hang in there until the surgeon's appt.

    Blessings,
    Lisa
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    lisa42 said:

    that makes me angry to hear!
    Hi John,

    That makes me angry for you. The nurse is spouting off too much when she should keep her mouth shut! Wait until you see the surgeon & hopefully everything will be as he talked about being before and you can have the surgery.
    Congratulations on good scan news- that's definitely good to hear!

    You take care & hang in there until the surgeon's appt.

    Blessings,
    Lisa

    Good news on one hand
    I would still think positive that they will get it out they just need to get together and decide whats best for you. best wishes to you ,

    michelle
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Hi John,if I were you,I
    Hi John,if I were you,I would be very angery too.I hate the ignorance and arrogance of the oncologists.Anyway we are our own advocates,if needed,just get a second opinion.I am glad to hear that the result of scan came out good.Happy Birthday!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Take the surgeon's word
    John,

    I would trust the surgeon more than any other doctor. That's the one who actually does the procedures! Hope yours stays with the original plan.

    I'm so sorry you have to be worried before the weekend like this, especially since your birthday is coming up. I'll be praying for only good news for you.

    *Hugs*
    Gail
  • dmdwins
    dmdwins Member Posts: 454 Member
    tootsie1 said:

    Take the surgeon's word
    John,

    I would trust the surgeon more than any other doctor. That's the one who actually does the procedures! Hope yours stays with the original plan.

    I'm so sorry you have to be worried before the weekend like this, especially since your birthday is coming up. I'll be praying for only good news for you.

    *Hugs*
    Gail

    Agree with Gail
    Go with the surgeons John-they are the ones actually performing the procedures and they sure as heck know better who is a SURGICAL(hence the word SURGEON) canidate. Happy Birthday,too.

    Smiles,
    Dawn
  • elizabethgd
    elizabethgd Member Posts: 145
    dmdwins said:

    Agree with Gail
    Go with the surgeons John-they are the ones actually performing the procedures and they sure as heck know better who is a SURGICAL(hence the word SURGEON) canidate. Happy Birthday,too.

    Smiles,
    Dawn

    Surgeon should know
    Hoping it will be good news from surgeon. The scan looked good so..
    Happy Birthday...enjoy your day.
    Elizabeth (Columbia)
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    John
    John,
    Glad to hear the scans look good. I am with everyone else. The surgeon is your guy. Sorry you have to think about this over the weekend. Have a great birthday.... forget about those two.
    Aloha,
    Kathleen
  • nudgie
    nudgie Member Posts: 1,478 Member
    Even in today's
    world full of electronic communication, people still can't speak face-to-face and are ALWAYS ASSUMING the someone has read said notes or "entire" letter, contract, etc.,

    It still pisses me off today that our wonderful Health Care Community still cannot communite with each other and it is still the patient's responsibility to make sure communication takes place between said doctors, sigh, something wrong with this picture?
  • luv3jay
    luv3jay Member Posts: 533 Member
    How annoying!
    As if we don't already have enough on our minds! Worrying about which doctor to believe is the last thing that should be a concern for you. I truly hope the surgeon was correct and they are able to surgically remove whatever remaining tumors you have left. That is one thing I can say for my docs at Georgetown, they all discuss the cases together...onc, surgeon so that when they give me information, it's the same. And they even say, 'well we discussed blah blah blah' and most of the time tell me the differences of opionions. Anyway, it's obvious that you feel comfortable with your team since they've been with you since the beginning. I agree that the nurse shouldn't even have put her two cents in! Keep us posted on what your doc says on Monday.

    -Sheri