salsarcat
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Seasheller if you’re still out there, just wanted to say my husband was told by three oncologists that his tumor was inoperable and chemo was the only possibility, then when he had no results from that, the oncologist sent him for a consultation with a surgeon who has a lot of liver experience, & the surgeon said it was operable, at least worth trying. So Tom had it out in Jaunuary; gave up a part of his liver too, is finally starting to feel more normal and active. So I know that everybody is different, but just wanted to say that even “inoperable” can be challenged, but not in every case. I think with my husband, the tumor was in a precarious place and he found one surgeon willing to “chance it.” Also this dr. found lots of gallstones, which were apparently a source of pain and heartburn and those symptoms have almost disappeared. Hubby just had follow up CT and PET scans, will get results soon.
The doctors do use that terminology, if nothing new shows they say the disease is “quiet” and if some new growth shows, they call it “hot spots” or “things are moving.” Tom diagnosed in June, had no treatment all summer, in Sept scans showed no change, so the onco said, “This disease is a slow mover” but then three months later, after chemo, the liver tumor had grown, almost doubled in size. If Dr. H hadn’t operated, Tom would be in bad shape by now, probably lose him in a few months. The way things are now, he has a chance.
My thoughts and good wishes to all of you who are stuck with this. Patients and all the family and friends who are fighting the fight with CC.
Sanilee wrote:Hello Everyone,
I have just been told a have either chelangiocarcinoma or metastitic adenocarcinoma, they say the can not rule either out as of yet. .Welcome Sanilee, My husband was in the same situation almost a year ago. He was pronounced stage IV but diagnosed “cancer of unknown primary.” The tumor was in his liver, but the drs said it didn’t originate there. Subsequent consultations strongly pointed to origin in bile duct area. Please do get several opinions and pay attention to how they agree and disagree. My husband was told by two oncologists that the tumor was inoperable, then a third said he could remove it. Now we don’t know that my husband was cured…the pathology reports found traces in lymph nodes. But his situation turned out very different from what he originally thought. Be very proactive, and find out what medical centers specialize in your type of cancer. Have a “plan B” and even “C.” What these help with is that whatever the dr. currently says, no matter how accurate, it won’t feel like the last word. My husband is actually feeling much better than he did before the holidays. The surgery was horribly painful but once his incision was on the mend, he has way less abdominal pressure and nausea and reflux. He’s got his appetite back and is trying to build up his strength again, and his need for morphine is way down; he takes a lot less. All that made the surgery worthwhile. So you never know what might be available. If we had stopped at the first dr’s opinion or even the second, he would be in his last days by now, IMHO. Best wishes to you.
Hello Robin,
My husband goes to Cancer Care Northwest in Spokane, but has also been seen at Seattle Cancer Care Alliance last Sept. SCCA is an alliance of Fred Hutchinson Cancer Center, the Univ of Wash and Children’s Hospital. We got on the SCCA list because I original contacted Memorial Sloan Kettering in NY (?) because MSK showed up on my online search for drs specializing in unknown primary. When MSK rep called, she said Seattle CCA is the same kind of facility, a “comprehensive” cancer care group which means they have a research hospital alliance. Also we had an appointment set up with MD Anderson in Houston, but as it turned out, Seattle could get Tom in first.The surgeon who finally operated on my husband was Dr. Holbrook at Cancer Care NW. He is top notch for liver and surrounding areas. He was willing to give my hub a try when others had said he was inoperable.
There are a lot of great people out there; all the oncologists we’ve met are candid and skilled, but their opionions on exactly what to do next can vary. Good that your dad has you to do the research…I was the researcher at our house. What I do find is that you need to figure out what are the questions that need asking, get 2 -3 expert opinions, and then look for the commonalities. Also depends on your dad’s ability/ willingness to travel and his philosophy of how to deal with all this. Allow yourself a certain amount of time to investigate and talk to drs, then give yourself rest and do something you enjoy for yourself. I had myself into hysterics at one point, over a phone call I missed…felt as if my husband’s life was in my hands. Everything worked out OK & we got our questions answered enough to proceed.
Blessings,
Sarah
Hello Jerry and thank you for the welcome and info. That’s interesting that your dr. said your gallbladder was “in the way” as now I recall the surgeon said something like that also. I did tell Tom that I had found a new forum and also info about CC. Tom had a portion of one lobe taken out but now I’m not sure how much that was, maybe 1/3. He also has hepatitis C which was diagnosed in 1998, but was later pronounced to be chronic and not progressive. The surgeon said that his liver is relatively healthy except for the cancer.
Well, thanks again and I’ll be around here to read and post and get to know the folks here. Tom won’t ever go to forums for “social” talk but was very active on eBay for several years until a couple of months ago. He collects and sells watches, clocks, lamps, and other collectable household items.
Hope the winter is winding down in your part of the country. We just got more snow here in eastern Washington, but it’s supposed to be over by the end of the week.
Sarah
