Intrahepatic post surgery…My story and welcome to it

I was diagnosed in late Feb 2014 after a month of looking for a primary cancer for a 4.3 cm adenocarcinoma in my outer left liver lobe. I was then told that since everything else had been ruled out, it had to be bile duct cancer (it was the only thing that lit up on the PET scan at the time) after going through two CT scans, endometrial biopsy and an upper GI (thank goodness I’d had up to date mammogram and pap smear, plus a colonoscopy only 6 months prior). My oncologist at the time was certain of her diagnosis and that it was operable. I’d already made an appointment at Mayo/Rochester (we live three hours away in good weather) and had requested the pathology slides be sent to Rochester to be reread. On Feb 27th, we drove through a ground blizzard to get to Rochester for my 7 a.m. first stop at the clinic. After a 3 hour meeting ending at noon with an oncology fellow and an oncologist, we were told that nodules in my lungs could be mesothelioma or a sarcoma and there was something binding my uterus and bladder together at some point. They were still looking for a primary cancer someplace other than bile duct cancer. So, they had their radiologists reread the CT and PET scans from home that I had hand carried with me and had their pathology dept redo the additional biopsy material sent to them and reread the slides. The original PET scan done at home that lit up only the tumor in the liver had apparently been done after waiting too long and the radioactive material had decayed too much for a really good scan. We were set up with a 4 p.m. apt with a surgeon to discuss my case and at that time, we were told that the radiologists and pathologists all agreed that this was bile duct cancer. The surgeon apparently took one look at everything, said she’d seen this before and was sure it was bile duct cancer. So, upon meeting with her, she explained what she proposed to do and asked if we were prepared to stay for surgery or if we had to go home first and come back. We’d gone with the intention of surgery as soon as they could do it, so I was scheduled for surgery the next day, Feb 28, 2014. After a 4 hour surgery to remove what was by then a 5 cm tumor and a quarter inch satellite tumor, and 6 lymph nodes, the surgeon was able to get a 2.2 cm clean margin. Pathology later indicated the lymph nodes had no signs of cancer. BTW….my surgeon, Dr. Kaye Reid Lombardo, only operates on pancreases and livers and specializes further in doing these resections as much laproscopically as possible, which is how she did mine. I had an unremarkable recovery and was sent home the morning of March 3, just two full days of recovery after the surgery. It was a rough ride home over Minnesota snow and ice packed highways and I was very sore by the time we arrived at home. I’m recovering from the surgery well, though several of the 5 laproscopic sites have had some issues. Just saw my GP yesterday and she said they were doing okay…just a long healing process. The main incision , about 3 inches long, (done because of my weight) has been healing the best of all of them probably because they used a vacumn pump on it after surgery to aide in drawing out draining fluid and healing. On Aprill 8th, I will have a followup CT scan at Mayo as well as followup appts with the surgeon and oncologists to see how I’m recovering and what comes next. Chemo has been mentioned, but I’ve also read that for intrahepatic bile duct cancer, often it isn’t used. How do they decide …how do I decide.
Let me back up, because I know some will ask how I was diagnosed. In early 2013, I contracted C-Diff, a bacterial infection of the colon after having taken a strong antibiotic the previous Christmas. After three rounds of antibiotic, two of which were vancamyacin, it was decided that the C-Diff had to be gone, but I still had the same bowel issues continuing of lighter colored and frequent stools. I opted to have a colonoscopy in July to check if there was anything there to cause my continuing problems and to take some biopsies of the colon lining to check for any residual C-Diff. Nothing was found and the biopsies were negative. I was told to use Citracel because it probably would take a while for the water balance in my colon to normalize. My little grandson, who I babysat, passed along several upper respiratory infections during the fall, each time going into bad bronchitis for me and one time, probable pneumonia. Things continued until early October, when I caught the last upper resp infection and saw my doctor. She gave me a lightweight antibiotic (not wanting to risk C-Diff again) and on day 5 of the antibiotic, all the bowel problems stopped…and stayed away for two months, when they suddenly reappeared over about a week’s period of time. I went back to my GP in late Dec, and we reran a C-Diff test which was negative, so again, I was told to use the Citracel. It didn’t fix anything and made me feel bloated. In later January, the 2 year old grandson gave me another upper respiratory and in 2 days, I was positive I had pneumonia and saw my GP. After she examined me, she then asked how that “other” problem was doing. I told her it hadn’t gone away and then she suddenly got a serious look on her face and said she wanted me to have a CT scan of my pelvic organs, specifically, the liver, pancreas and gall bladder. It was done the next day and the rest is history. Oh, and the same antibiotic that caused the symptoms to go away in October, did the same thing on day 5 of the January round of the antibiotic. It has not come back since. All the doctors I spoke to, including the ones at Mayo, have no idea what the connection is to the antibiotic and the symptoms stopping two different times and none of them think that it is related to the bile duct cancer. It well may be that it is totally unrelated to the bile duct cancer, …a red herring so to speak. So, the liver tumor was found quite by accident when I got pneumonia and saw my doctor, which led to the bowel issue discussion, which led to my doctor getting suddenly getting a gut feeling that she should order the scan.
I was told by both my local oncologist and the Mayo surgeon before surgery, that I had a chance for a cure from bile duct cancer…and if it happens, I probably need to contribute a big amount to our grandson’s college fund. That said, both comments about a cure were based on finding one tumor and not two. I’ve read that having multiple tumors reduces survivability. I realize that I am so fortunate to have this cancer found as early as it was (pathology staging is T2b) and that it was operable. But, then I see that it has a nasty habit of coming back, esp intrahepatic and there’s nothing much to offer for adjunct therapy that really kills off even stray cells that may have migrated. Right now, emotionally, I have a weird sense that this is all very surreal….almost as it was a dream and didn’t happen. I feel even disconnected to the incisions, which should be a huge reminder. I’m no longer filled with outward anxiety of hand shaking, inability to write or type or talk as I was during all the testing. I need to understand this cancer and what’s available for treatment as I’ve always taken an active role in my healthcare, but researching this disease ends up usually with me crying a lot. I cry the most when people show kindnesses to me and have the most difficult times when I’m around friends and family and they simply ask how I’m doing. I’ve always been an emotional person and cry even during schmaltzy commercials, but this is always with me and comes out when I least want it to. My friends and family understand me crying to a point, but now that the surgery is over, I think they want me to move on and be positive all the time. I’ve explained about the recurrence rate of this aggressive cancer because I don’t think they really get it. Recently, I’ve felt like maybe I do have a chance of being one of the few who beat this cancer, and am trying to take this one step at a time, enjoying time with my family and friends. I’ve kept from posting on here until now, because I’ve felt guilty about feeling so dismal when I was at least operable when the majority are not, if not even having a potential cure. It’s like survivor’s guilt, except I have no guarantee that I will beat this.
I apologize for the long post, but I type as fast as I talk or think and I’m a talking kind of person.