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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 Freddie –
thanks for the update on your Mom. I am so glad to hear you are happier with your new doctor. I second what Lainy said – asking for something from her doctor to calm her nerves. While I’m cancer-free now – I am still taking medicine for depression and anxiety. Its been a huge help to me.
Betsy
Hello Freddie and thanks for the update. Glad they got to the immediate problem and very happy that you found the “right” doctor for you. If Mom keeps on being anxious there would be nothing wrong with asking the doctor for something to calm her nerves. What she is dealing with is huge and perhaps she could use some help in that department. She needs her energy to fight the CC.
Good work, you are a good advocate for your Mother.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 gotten second and third opinions but I had to send all of records and my scans – going all the way back to my resection. I think it would be difficult to give a diagnosis with looking at the scans. Can I ask what hospital the second opinion came from? I learned a lot getting other opinions. I kept going until I found 2 opinions that were the same. I can’t explain why the team didn’t explain the leaking bile duct issue to you sooner. Since my resection my doctor has been watching one bile duct that was scarring over. Each time I had a scan he would mention he was keeping on eye on it but didn’t explain what that meant and I didn’t ask. Its hard to know what questions to ask and even if you do know what to ask often times the doctors cant predict or just dont know. I know you are all too aware of this, but liver surgery is such a big surgery and so risky. It seems like so many people come out having bile duct issues at some point. You can’t punish yourself – you made decisions based on the information you had and who knows if it all wouldn’t have come to this anyway. Gather your strength and courage and keep pushing ahead for answers. I would hate to think your doctors are being dismissive with your mother’s life…..I just feel there is no clear path for the doctors or the patients.
Betsy
There is nothing wrong with getting a 3rd opinion! I would ask the Doctor why you were not told about the leaky Bile. Where is your Mother being treated and have you asked this Doctor how many CC Patients he has treated. It does worry me that a doctor let this leak go on for 2 years without saying anything.
I would have a hard time gathering my thoughts also. So, I would gather again all the information and send it for a 3rd opinion. Perhaps others will chime in here and also ask where Mom is being treated and maybe know someone you can call.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.
Freddie,
Just wanted to say welcome, you have already seen the benefit of the board–helpful advice from some of the darned nicest people you’ve never met! And the Members’ Cafe is always good for a little mental caffeine!
Patty
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.
My quality of life with the drains is tolerable. To be sure, its not much fun, but I’ve gotten used to it. I used to be really fussy about hiding them from sight but I don’t worry about that so much anymore. The worst thing is the fatigue – I don’t have the same energy I used to and tire out easily. By the way, I’m 49. I can absolutely understand what your Mom is feeling. Its so hard and it just sucks. You think to yourself, I’ve been through so much, am cancer-free, and now I have these bile duct issues. I would suggest you let your Mom feel whatever she is feeling. It really helps to read the posts on this website. There are so many amazing people dealing with tremendous problems and it helps to hear how they are managing and coping. The threat of the cancer returning is very real and I think about it a lot. One thing that really works for me is distraction – I love to watch movies on Netflix, read books, listen to my Ipod, bake, cook, hang out with my dog. It gives me a break from my mind.
As fas as infection at the drain site, I am on oral antibiotics and have been since January 2010. I wash the site with soap and water and use hydrogen perioxide if the site is really red and sore. While I was in the hospital, I always watched to see the nurses used gloves if they were going to handle the drain site. Can’t suggest anything else to do in the hospital. I actually think there is more risk of getting infections in the hospital than at home.
Don’t know how my doc plans to glue the duct. As soon as I find out, I’ll let you know.
Betsy
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?
Those MRSA infections can be nasty. I hope she starts to feel better soon and the drugs get on top of the infection. I can recommend my Interventional Radiologist, Mark Sands. He is a wonderful clinician and a highly skilled doctor. He is the section head of the Interventional Radiology dept at the Clinic. He has seen me through several serious infections. He is innovative and willing to think outside the box. He may do phone consultations but I’m not sure. He can be reached at 216-444-5616. Hang in there – I know what a tough time this is for you and your Mom.
Betsy
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