cut2thechase
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You guys have helped me tremendously. If Mom weren’t computer illiterate I would have her online interacting with you, I really think it would help her as well. We are seeking counceling for her. We attended a group session about a year ago but her and I both felt that the people attending the session weren’t taking control of their illness or fates and letting cancer win, victims if you will. Mom is a survivor but is struggling, now that we have this piece in order we need to get her mind right.
Thank you all for your support!Hi Betsy,
She was brought to a second doctor this past Friday because her billirubin was at a 12. This team, at UMDNJ in Newark NJ was able to insert the stent from her duct to her small intestine in one attempt. She came home last night but is extremely nervous that she will have side effects since that is all she has known since begining this journey two years ago. She cannot relax. I will let her have her time for this week but by the weekend I plan on filling the house with people to help keep her mind off of this.Lainy,
She was treated initially by a Doctor Christopher Gannon from Robert Wood Johnson in New Brunswick, NJ but is now being seen by a Doctor Dela Torre. The difference is night and day. Dela Torre is patient, willing to explain and has a good but firm bedside manner.
I’ve read several posts about people’s objection to “doctor bashing” but I must say that, from our experience, Dr. Gannon has been nothing but argumentative and somewhat deffensive throughout this entire process. I don’t want to bash him, he performed the surgery that gave us Mom back but we have found him impossibly difficult to deal with. He spoke to us as though we should know what we are dealing with and spoke down to us for asking questions in a what-are-you-stupid, no duh kind of way.
I say again, we are very thankful for his skilled hands, its his professionalism that I question. If you are looking for a doctor who will guide you compassionately, he is not the doctor for you.I have to put this out there as I am pretty confused and scared right now. My brother sent a second doctor my mother’s records (No scans or films, just her charts). The second doctor is expressing concern and is talking about how long my Mom has to live based on what he has read. This was never presented to us in this way by her current team. We always felt as though she had beaten this, the only complication was a leaking duct.
The 2nd doctor’s concern is that the cancer was in her bile ducts and had spread to a lymph node. The cancer was removed from both areas 2 years ago and when she had surgery 8 weeks ago to remove a mass that was created by the leaking bile her current doctor said that even after two years it didn’t look like there was any signs of cancer in the area.
I don’t know what to do to be sure. I feel as though we are being spoon fed information, only IF we ask for it. I really hope that these doctors do not have the mindset of, well she has a cancer that people only survive for 3-5 years from the date of diagnosis so if she lives that long then we did our best because I can tell you that from everything I’ve seen happen throughout this whole process, that is the furthest thing from the truth. We have to push for test, push for answers. We only found out that her bile duct was leaking when she had the surgery 2 months ago, something her team was aware of for the past two + years. They were hoping that it would heal on its own.
I’m no doctor but can’t bile leaking into your body cause sepsis? Shouldn’t they have told us that the duct was leaking since they stopped treating her? Have I wasted valuable time over the past two years hoping that she would start feeling better not realizing that the reason for the fevers and nausea was a leaking duct and was not side effects from the chemo, or percocet, or raditation as we were told? How can they be so dismissive with my mothers life? I refuse to let her be a statistic but I don’t know what to do.
I hope this makes sense, I’m having a hard time gathering my thoughts right now.Thank you to everyone for the well wishes and the warm welcome. Its hard to find a place to gather info and to have someone that is going through a similar situation to talk to and gain knowledge from. I know this board will help tremendously!
Right now we are working on getting her stronger, once she is home and she can catch her breath we will figure out what the next step should be.
Betsy, Great news, Dr. Sands called me back the same night I called him. I want to thank you for putting me in touch with him, he is very professional. As of right now the team that is currently working on my Mom was finally able to insert the stent. She is getting stronger and should be going home soon. We will continue to seek out second opinions to see what the best course of action will be in regards to continuing her treatment. Thank you so much for your advice.
Betsy, thank you for the kind words and for the phone number. I will reach out to Dr. Sands tomorrow. If you don’t mind me asking, how is your quality of life with the drains?
My concern with Mom is primarily her mind set, the drains remind her of cancer. Even with the doctors telling her cancer is not present the drains are a constant reminder of having had it and that it could come back at any time. Secondly there is the concern of infection at the drain site. The hospital isn’t the cleanest place in the world but at least its more sterile than the outside world.You mentioned the doctor gluing your duct closed. Is this an option? Can this be done laparoscopically?
Betsy,
Thank you for taking the time to respond, I appreciate it. I am sorry to hear of your sitiation and hope that you will find the help you need. Mom is dealing with MRSA for the past two weeks as she was when she was treated 2 1/2 years ago.
Outside of a surgey that was performed by her surgeon, Dr. Christopher Gannon 7 weeks ago, the interventional radiology team has been in charge of her care for the time that she has been in the hospital.
We have had reports that there is a tremendous amount of scar tissue that is hindering their success with stenting the duct in addition to the duct not dilating because it is torn. (My Mom has had approximately 10 abdominal surgeries in her lifetime)
We are ideally looking for the most skilled interventional readiologist to attempt the procedure.
