Awaiting diagnosis…why is this taking so long?

Discussion Board Forums Introductions! Awaiting diagnosis…why is this taking so long?

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  • #59616
    mlepp0416
    Participant

    Twoforjoy:

    You should be able to change your husbands PCP if you have an HMO plan. Please look into that. An HMO does need referrals to a specialist and the specialist also have to be in network. If your husband’s current PCP will not do the referrals, then please check into changing PCP’s!

    A PCP should be willing to do whatever it takes to get your husband to the doctor’s that he needs to see.

    Let me know if you have any questions. I currently work for a large insurance company and am willing to help you with any questions you may have.

    Hugs,
    Margaret

    #59615
    nancy246
    Participant

    Twoforjoy and Liz, I know how stressful it was to look after my husband when he was sick and I had no children in the house! I feel for you; you are true supermoms! Sending lots of positive thoughts and prayer that your wonderful husbands will be candidates for surgery. Hugs. Nancy

    #59614

    I hope you have a better week this week regarding Dr. appointments and get some movement! I had the same outlook in my mind, regardless if this is cancer or not, something has to get cut out for me to function normally. Keep us posted!

    #59613
    twoforjoy
    Member

    Derin, thanks for your message. We’ve both been wondering why they aren’t being more aggressive about going in surgically, because from what they’ve told him, surgery is going to be required whether the stricture is benign or malignant.

    Again, we’re hoping the U of M people will know more about what’s going on and have an action plan. Because it looks like nothing has spread so far, we are VERY anxious to have them remove the stricture as soon as possible. From everything I’ve read, it makes a huge amount of difference, with this cancer, if they remove before the cancer has spread.

    #59612

    TFJ,
    Reading your intro I had flashbacks…. Everything you described, literally everything, was exactly what happened to me!! I’m 40 (41 in 19 days), have a 13 and 11 yr old, and all of my symptoms came to a head my son’s Bar Mitzvah weekend. I checked into the hospital Sunday at 2am, CT, MRI, Ultrasound saw nothing, ERCP Monday, stricture in common bile duct, stent put in, scrapings were negative, and there was a small 1cm growth that they grabbed 2 samples of thru the bile duct wall and the pathology results on Wednesday were “atypical suspicious fibrous cells”. We were immediately on the phone to Sloan Kettering in NY (I live in Fla by the way, and inlaws live in Great Neck) and got an appointment Tuesday the 6th of September to see the head of Hepatibiliary Surgery, Dr. W. Jarnagin.

    I was resigned to the fact that no matter what if it was cancerous or not, I had to have something cut out of me to ‘fix’ the problem so I accepted that. Officially, we did not get the ‘cancer’ and ‘CC’ diagnosis until 5 days after my surgery (which was on 9/14/11, 8 days after my initial meeting) while I was in the hospital. Positive for you in this, since your DH (funny, my initials…) sound so extremely similar in symptoms, nothing spread on mine, it was literally only in the bile duct albeit my tumor was smaller than his. They did take 3/4 of the liver, gall bladder, bile duct, and used the small intestine to make a new bile duct for me though. I had completely clean margins and as I type this am in chemo for my 1st dose of my 4th cycle of Gemzar/Cisplatin which is also my last dose and then on to radiation. Preventative adjuvant therapy since there are really no protocols on what to do after a successful resection.

    My suggestion, DO NOT WAIT, get in to see a surgeon ASAP, schedule the surgery, and get it cut out if at all possible!! It just seems that a lot of the stories on this site unfortunately involve those with tumors either too large to operate because of portal vein involvement or mets everywhere and they won’t operate because of them and lengthy chemo sessions to shrink everything are involved before the surgical option is ever discussed again. Please keep us posted, you can shoot me a direct note if you want to my email (derinhampton@gmaill.com), and all the best of luck on this new unfortunate journey…

    #59611
    marions
    Moderator

    two….I agree and especially like that the images were requested -they want their own specialists to evaluate the records.
    Please keep us posted.
    Hugs,
    Marion

    #59610
    twoforjoy
    Member

    Thanks for all of the support and replies.

    We haven’t really gotten anywhere yet. The new PCP my husband saw was unable to refer him to the UM center because he’s contractually obligated to only provide in-system referrals. Even though, as he admitted, there’s nobody in-system who he felt comfortable referring my husband to. But, we were able to get an insurance override to change PCPs faster than normal (there’s usually a 30-day waiting period) and got my husband an appointment to see a UM PCP next Thursday. In the meantime the UM liver tumor clinic is receiving all of his information, so hopefully they’ll be able to get him in quickly.

    I feel very positive that they don’t just want copies of his paper records, but have requested the actual images from all of his scans and the tissue samples from the ERCP. I’m hoping that, since they’ve seen this before, they might be able to diagnose based on what’s already been done. But we do feel like the U of M clinic is the best way for us to go right now, and I’m feeling relieved that they’re going to be taking over his diagnosis and care.

    #59609
    marions
    Moderator

    Every so often I like to repost this important piece of advise:
    I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

    I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.

    I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.

    I have the right to get angry, be depressed, and express difficult feelings once in a while.

    I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if she knows that she is doing it or not.)

    I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

    I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.

    I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.
    Author unknown

    #59608
    amy
    Participant

    Hi Twoforjoy,
    I can certainly understand how your feeling picking up the slack in every area, especially with such young kids. I feel the same, although my kids are older, the youngest is 12, then 14 and 17, the two older ones are out of the house. Still, keeping up with the house, sports schedules, school, and helping run his business, does not leave alot of time for anything except exhausted sleep, but you will find how much you can do, and will feel good to just keep things running. I know how much I just miss “normal”. Keep your chin up and do what you can do the rest will be there
    All the best, and my thoughts are with you…..
    A fellow caretaker of everything and everybody
    ~Amy

    #59607
    pamela
    Participant

    I am glad that I could be some help to you and I am so happy that you can finally get some definite answers. Once you get the ball rolling and get an action plan, no matter where you decide to go, you will feel so much better. All the best to you and your family.

    -Pam

    #59606
    twoforjoy
    Member

    Thanks again, Pamela. I actually just got off the phone with their liver tumor clinic. They were so helpful.

    I explained our situation, and that the surgeon DH was working with had never worked with anybody with both CC and PSC, and asked if any of their surgeons had. She said that all of their surgeons had dealt with CC in the context of PSC. So that really makes me feel a lot better. We’re going to start getting stuff faxed and sent over there tomorrow.

    #59605
    pamela
    Participant

    I would definitely not base the decision on going to U of M for care on your childbirth experience. All I know is that everyone at the Cancer Center is awesome. They are all so friendly, caring and compassionate. Lauren’s oncologist was not our favorite at first. I said this before. I think it was because he was telling us things we didn’t want to hear. We really like him now and he always has Lauren’s best interest. He is so busy, but he even calls Lauren at home from time to time to make sure she is doing ok. If she ever has a question, or doesn’t feel well, we can call and a nurse gets back to us very quickly. We never have to call and make appointments for anything. The schedulers there coordinate all of your appointments after you see the doctor and make them consecutive for example Labs at 1, Doctor at 2, Chemo at 3. They also schedule any testing for you such as CT or MRI. You never have to lift a finger. It takes away a lot of stress. I cannot say enough good things. It would be awesome to be 40 minutes away like you are. Just a little more info for you. Take it for what it’s worth.

    -Pam

    #59604
    twoforjoy
    Member
    Liz2011 wrote:
    Just wanted to say hello as we have potentially similar situations…

    I’m 35 and my husband was diagnosed with CC in the common hepatic duct but unfortunately with 2 mets to the liver (which have shrunk enough to render them invisible…sitting in MD office now awaiting recs on further pursuing resection). Anyway, we have just 2 kids but ages 7 and 3, similar to yours.

    I can’t say it gets “easier”, but you do get stronger! And more educated which makes the fight easier.

    Hoping for a good outcome for you guys!!!!

    Thank you!

    I’m already feeling completely worn out. DH is just feeling crappy much of the time. He has no energy. So I feel like I’ve now got all of the childcare responsibilities on me, all of the household responsibilities, plus I’m taking are of DH and doing most of the phone calls/research for his medical care. It’s like I suddenly have three full-time jobs. ;)

    Thankfully the babies are too little to really get anything that’s going on, but I worry about my oldest. He is very smart and very sensitive. We’re not telling him much at this point, but he knows that his dad is sick and I’m sure he sees we’re worried. I just feel so badly for them. I mean, as unfair as it seems to me for DH to be going through all this, it seems so much more unfair that our kids have to to through it. It’s just a lot to deal with for such little people.

    We’re fortunate that DH’s work is being awesome–they are fine with him working from home as he’s able–and, even though we have no family nearby, we live in a great community with wonderful friends. When we went to the appointment where they were supposed to be able to tell us if it was cancer, we had three families hanging out at our house watching our kids and waiting so they’d be there when we got back. So I can’t really complain. But I am kind of missing the days when I could lay down for an afternoon nap!

    #59603
    twoforjoy
    Member
    jathy1125 wrote:
    TFJ-Welcome and sorry you had to find us. I am a CC survivor. I will be cancer free 3 years in May 2012. I am not sure why you are waiting for doctor referals, you can contact some of the best doctors and hospitals on your own, is it an insurance issue?

    It’s pretty much an insurance issue. Our insurance will only cover things that we get a PCP referral for. And, right now DH has an awful PCP, which is making things difficult. He is meeting with a new PCP on Wednesday, and he’ll be talking about getting referrals then. He’s more comfortable asking for a referral to UM than to Mayo, so hopefully he’ll do that.

    If we had a cancer diagnosis, cost wouldn’t be a factor. We’ll get him the best treatment we can. Our concern is just going tens of thousands of dollars (or more) into debt trying to get the diagnosis, especially if we are going to be going out-of-network for treatment.

    There’s also, like I said, the denial factor. I keep telling DH we can just call these places, explain what’s going on, and they’ll probably want to see him, and see him soon. He seems to think (hope?) that they’ll say we’re crazy and overreacting and refuse to see him unless he has a diagnosis. I don’t think he is really accepting how serious this is and how seriously it will be taken.

    I do think we need to look elsewhere for a diagnosis, and I really appreciate the input here. Like I said, I don’t get, at this point, why they are doing an EUS. They already took brushings. They already looked at the cells and found them suggestive of cancer. It’s my understanding that it would be relatively unlikely, given that and the size of the stricture, for the stricture to be benign. So I don’t get why they’re waiting two weeks to do an EUS and take more brushings. From what I’ve read, the brushings tend not to be definitive anyway (and it doesn’t sound like they are planning to send them out to any of the labs where they are able to make a more definitive finding). So they do the brushings, find more abnormal cells, then what?

    Rather than sitting around for another 8 days waiting for the EUS and then waiting for the results, I feel good knowing that I’m not crazy for thinking we should try to get DH in somewhere else where they might be able to diagnose this more quickly.

    #59602
    jathy1125
    Participant

    TFJ-Welcome and sorry you had to find us. I am a CC survivor. I will be cancer free 3 years in May 2012. I am not sure why you are waiting for doctor referals, you can contact some of the best doctors and hospitals on your own, is it an insurance issue?
    I am alive because of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman and Barnes is are one of the top place for CC. Dr.Javle is another great doctor talked about a lot here, at MD Anderson, both of these doctors are easily contacted and have a reputation for helping you immediately. CC is so rare, you really need to be in a place that has expierence because time is not our friend. CC has a reputation of being mis- diagnosed and biopsy’s can come back a false negative so expierence doctors and hospitals are a must.
    Please read my story at thetelegraph.com under christmas miracle it will give you HOPE!!!
    Please keep posting and venting you are among family who haved “walked a mile in your shoes”.
    Lots of prayers-Cathy

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