February 7, 2014 at 5:24 pm #79436
Mark actually went before the Virginia Mason Liver Tumor Board…..it was 15 docs from all disciplines and they looked at it all and came up with a treatment plan. (Liver Board encompasses liver, gallbladder, bile ducts and pancreas) We didn’t meet with them although we could have if we wanted to. When I requested his Medical Record I got to read what they had said which was exactly what the surgeon and the ONC told us. It was just that one Gastro who decided that he would tell us what to do with his bad bedside manner. This was well after surgery and was one of the times he ended up in the hospital for the sepsis. I see why they wanted to do the ERCP and the stent BUT he has not had an infection since September and the narrowing of the bile ducts that they were worried about is gone. I understand reading the CT scan well enough to see the difference. So we made the right choice…..wait and see since it was not critical and one less procedure to go through.
We almost need a cancer navigator for people who have this…someone who understands the disease well enough to help guide people to the right questions and treatments. I know the American Cancer Society navigator came to see us but she didn’t have a clue how to help us.
KrisVFebruary 7, 2014 at 9:48 am #79435marionsModerator
This cancer warrants a multidisciplinary team. I believe anyone diagnosed should insists on it prior to treatments. Unfortunately this does not happen as in most instances – patients are ill, overwhelmed, shocked and in disbelieve. But, as soon as you can, insists on a surgeon, radiologist, oncologist, gastroenterologist and your GP, to interact with each other on your behalf. Hugs
MarionFebruary 6, 2014 at 7:30 pm #79434lisasSpectator
Again, showing why it is so important to have someone kniwlegable (wven if not actually in the medical profession) with the patient to act on their behalf when they can’t. My very nice, but very young hospital internist, who only came to treat me because I was so dehydrated and nauseous back in October and didn’t understand my cancer would have treated me day after day for ordinary nausea BUT FOR my husband getting involved and questioning why he hadn’t talked to Dr. X and Dr. Y. Clearly. He didn’t know either of them. They got involved and problems were figured out within an hour. I was too sick to stand up for myself at the time.
LisaFebruary 6, 2014 at 7:17 pm #79433darlaSpectator
Interesting how quickly they got it together after being confronted. Too bad they couldn’t do it right on their own. Keep it up Kris you are Marks best advocate.
Love & Hugs,
DarlaFebruary 6, 2014 at 6:53 pm #79432
Well that particular doc had some really bad bedside manners and he just didn’t approach it right. He came in and basically told us this was how it was going to be then got upset when we started asking questions about the why….goes back to wanting to do ERCP and stent placement which we didn’t want to do. He got Mark so upset in the hospital that his pulse spiked so high that the nurses came running in worried that he was having cardiac problems. It was kind of funny in retrospect. It was also funny reading his visit note for this.
I also called a couple of time outs during hospital stays for Mark when things got confusing. We had a lot of issues when he had the blood clot and everyone had a differernt plan. I said no more anything – no blood tests, no medications, nothing until they had a plan. Took them about 15 minutes for everyone to get on the same page.
KrisVFebruary 6, 2014 at 4:52 pm #79431darlaSpectator
Congrats Kris! I also think that sometimes it is a good thing to confront the doctors.
DarlaFebruary 6, 2014 at 6:30 am #79430gavinModerator
Congrats Kris, well done. I know that you will be a great moderator!!
And as for you getting difficult with a few doctors a couple of times, good!!
GavinFebruary 6, 2014 at 5:44 am #9510
I have to say I am really impressed with Virginia Mason. I requested all of Mark’s medical records last Wednesday and got them all today. I got 12 DVD’s with all his imaging results/films on the a few days ago and this must be 2 reams of paper and weighs about 10#.
I guess I was really ready to look through them. I know when this all first started I didn’t want to know anything about his tumor – not the staging, not the differentiation, nothing. But now I was ready for it.
He was/is T3, N1, M0 with R0 margins which equates to stage 3B with clean wound margins at surgery. Initially (before surgery) he tentatively staged as Stage 2. It was moderately differentiated adenocarcinoma and the main tumor was 3 x 2.2 x 2.0 cm with “arms” reaching into the left lobe and caudate lobe.
It was interesting to read through the operative report and look at the films from before and after the surgery – not that I could really tell a whole lot. Also it was good to see that no one said anything bad about me….I did get a little difficult with a couple of docs at times. Maybe it was because they always called Mark a pleasant 50 year old man so that made up for me.
Now I am ready for the registry.
Also it is kind of cool to see that Moderator under my name. Thank you for believing in me.
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