Discussion Board Forums General Discussion Can you tell me if all of this sounds routine? Urgent advice needed!

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  • #32694
    jclegg
    Member

    The Docotr does not get an “A” in bedside manner! Many of them don’t. It is VERY common for a Doctor to do an exploratory in this type of cancer, looking to be sure that the cancer has not spread to the lymph nodes. If it has, most Doctors will not continue, as they feel if the surgery can’t get it all out. it will not help. I think it is important to be getting this information from a Doctor who has optimum experience in this type of cancer. Also, I believe that it is common with this type of cancer to be given very little hope – I know that my husband was not, and he was at the Mayo Clinic. Each person’s case is different, however, and some people are much more furtunate when it comes to treatment plans. I am glad to see that your Step-Dad has advocates and wish you all the very best.

    Joyce C.

    #32707
    marions
    Moderator

    Hello Amy. I would like to follow Julia in welcoming you and I would like to revive your posting. Personally, I do not remember anyone having to have their port replaced and I have been on this site since 2006 but there is a possibility for me to have missed it. In that case I I hope for someone to chime in. May I ask where you are being treated and what type of chemotherapy you are receiving? And, how are you feeling? I am glad that you have joined our lively group.
    Best wishes,
    Marion

    #32706
    lalupes
    Participant

    Hello Readaloud & Amy H, I’m sorry I can’t help with your questions, but I want to welcome you both to this wonderful site.

    I hope you’re getting more positive help from your step-dad’s doctors now, Readaloud.

    Amy, there are people on here with an amazing wealth of knowledge & I’m sure someone will be on soon who can shed some light on your worries.

    All the best
    Julia

    #32705
    amy-h
    Member

    Hi new to this site.I have had cc for a year now,chemo the only thing helping.I was wondering if anyone is having trouble with there ports.I have mine 6 months and has had in replaced twice and now need it replaced again.This is the only thing that is bothering me right now.

    #32704
    lainy
    Member

    I posted above that my husband had a Whipple 4 years ago and he is now 77.

    MD Anderson is one of the best but there are also many local doctors who are good. We were on vacation in Wisconsin and we lucked out as there were only 2 who did the Whipple (it was an emergency). You want an aggressive doctor who has done quite a few Whipples. I had posted on another site that during the surgery our doc asked his Resident what he would do and the Resident said I would close him up and let him have quality of life. The doctor said, Oh yeah? Watch me! That was like I said, 4 years ago.

    #32703
    paa
    Member

    Even among doctors that have handled CC in the past. The more experience the better.

    #32702
    paa
    Member

    IMHO, to the extent possible, you need to consult with several doctors before deciding which one to do the surgery. Some surgeons are far more willing and capable of doing a more agressive surgery, which is often required for a positive outcome.

    #32701
    just_jill
    Member

    I do not see any mention of a what is called a whipple , in your post. It has a another fancy name called, Pancreaticoduodenectomy. If this surgeon plans to do this procedure, please stop and investigate going to MD. There is only one surgeon in my state that is familar enough with the surgery, and that is where went.

    Since the stent has been placed, there should not be a huge hurry.

    #32700
    tiapatty
    Member

    I am most troubled by the mixing up of the files, I was at the doctor once and she started to tell me my test results and then said, oh, no wait, this isn’t even your file, she was very angry with her staff. How long were the files mixed up? And how can you be sure they will have the right file when they operate?

    With this cancer I can understand surgeons not wanting to get patients hopes up too much but perhaps they do need to reiterate more that the surgery is first and foremost exploratory and that more decisions can be made when they have the lay of the land. In other words, it’s possible we can do something but we make no promises.

    Patty

    #32699
    marions
    Moderator

    Some doctors are highly experienced surgeons but, very much lack in the department of bed side manners. It appears that your Dad happens to have run across one such surgeon. Doctors need to allow the patients to focus on Hope rather then despair. It is true in that the real extent of the disease can only by observed while in the operating room and halted surgeries are not uncommon with this cancer however, when a patient is facing a surgery as complex as this one, he or she must have hope for a positive outcome. You might want to contact the surgeon explaining your concerns. He may very well want to speak with your Dad once more before the set date of surgery. I would insist on it. You may then, if necessary, encourage your Dad to speak with another physician. Of course, you would want to make sure that this doctor is very familiar with this type of disease and has operated on many patients with this cancer. You might also want to ask about the outcome of his/her previous surgeries. A good place to start would be the surgeon Betsy had recommended. I would also ask:
    for the names of the other doctors involved in the care of your Dad,
    who will be the doctor in charge of coordinating the care,
    what other health care professionals expected to be involved.
    Good luck. I am hoping for a positive outcome.

    Marion

    #32698
    betsy
    Member

    I had my liver resection at the Cleveland Clinic January 2009. My surgeon was Dr. John Fung. He is an amazing surgeon, head of liver transplants and Department Chair of General Surgery. You can google him if you need more information. If you want to give the Clinic one more try, I highly recommend him. I am sorry to hear about your step-father. If I can help in any way, please let me know. I live in the Cleveland area and am pretty familiar with the Clinic.

    Betsy

    #32697
    lainy
    Member

    I would steer as far away as possible from this doctor. My husband had a Whipple surgery for CC in the bile duct valve. The doctor did say, in a nice way, that if the cancer had spread to the pancreas there would be no hope and he would not continue with the surgery. We were very lucky. But for a doctor to give up before he even start…no,no! Ask him how many CC patients he has dealt with. You have the right to pick up dad’s records and run to a good doctor. Maybe you will even get some good suggestions from others in your area. Good luck and please keep us posted.

    #32696
    walk
    Member

    My .02 short answer: find another doctor.

    Your step dad is the customer and if no one feels confident in the doctor, then it would have a detrimental effect.

    Best of luck.

    #32695
    readaloud
    Member

    Forgot to mention that the surgery is supposed to be to remove the tumor from the bile duct. They can not see any spots anywhere else.

    #2832
    readaloud
    Member

    I have taken a look around this board and it seems to be a wonderful and hopeful place. I hope someone here can answer a couple of questions for me. My dear step-dad developed the symptoms of a blocked liver. A tumor was seen on his cat scan in his bile duct. He ended up having a stint put in. He has been recovering pretty nicely. He went to Cleveland Clinic and the doctor was pretty negative, IMO. Before Cleveland Clinic, the local doctors seemed pretty upbeat about the cat scan and said the biopsies came back as benign. To make a long story very short, they had my step-dad’s records mixed up with someone else with the same first name. (My mom didn’t things sounded right so she kept pushing until the mystery was solved) We all breathed a sigh of relief. Fast forward to today when they took the real records back to Cleve Clinic and the doctor once again met with him and was just as negative as before! He said (again), that if it looked like cancer when he got in there day after tomorrow–he would just “sew him back up”. Is this typical to be talked to in this way and be given so little hope at this stage in the game? My step-dad (a purple heart vet–one of the bravest men I have ever met) is just so broken by the way this surgeon keeps giving him so little hope. Please tell me if this is on track for what is happening or if we should fire this guy NOW and switch to MD Anderson or some other place and doctor. Sorry to be so brief but I am late getting my kids to an event.

    Thanks for any and all help and advice! God bless you all!

    Readaloud

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