jim-wilde
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Mark, you need to find a doctor to interpret the CT radiology report in language you can understand. I get copies of all that kind of stuff, but am not qualified to interpret the info myself. It’s very easy to misread.
I got some guidance from a digestive diseases onc, who read the final path report, noted the writer’s comment about some aggressive tissue being removed, said there wasn’t a lot of data, but recommended 6 months of Gemzar for me. If you don’t have the final path report, get it and let it and someone who can interpret it be your guide. Gemzar alone isn’t too bad, Gemzar/Cisplatin is an entirely different deal, however, BC Cisplatin is one of the most toxic of chemo agents.
Again, I wouild suggest contacting a very knowledgeable onc to help you decide. BTW, my surgeon recommended no further treatment, then modified that after talking to the onc.
Julie, you know there’s something perversely good about cc in my case. Had I not had cc, the malignant lung nodule would never have been detected until I respiratory symptoms, and that would clearly have been too late. The artery would have been wrecked and I would have been a goner. How many can say cc saved their lives?
Marions, one of the moderators, lives in the SF area and should be up on the best CA care facilities. I would suggest sending her an email … she’s very knowledgeable and helpful. Good luck.
I’m feeling pretty good for being a pinata for three hours. A little sore, but otherwise fine. What’s normal anyway?
Nothing but good news. We spent about 45 minutes Thursday reviewing the path report with a pulmonary oncologist, who very carefully translated the whole report for us. The adenocarcinoma which was removed was absolutely NOT cc related, had not invaded the artery it surrounded, and was completely removed. No further treatment needed, just follow as part of the usual cc followups. Less than 15% chance of recurrence. Had this nodule not been removed, it would have eventually compromised the artery, which would have been very grim indeed.
Now I will begin a new (hopefully totally boring) thread in the fall when I get another CT. I’m feeling very fortunate right now!
Patti, it’s always nice to hear of medical adventures with a good outcome. I read elsewhere about Dr Marsh and what he accomplished. There are not many surgeon who take ‘inoperable’ patients. Bless the ones that do. My surgeon, Dr. Tomoaki Kato, is another who has done successful surgeries on many such patients. While I wasn’t considered ‘inoperable’, I certainly was clearly high risk (cardiac issues, etc.) I had a left hepatic lobe resection (12 hour procedure) done in April 2009, and so far, am clean.
Your story gives compelling reasons to get additional opinions with CC. Many places just don’t see enough patients to be very experienced and don’t have the creative and brave surgeons it takes to combat this horrible disease.
Good luck to Bruce.
I see the lung surgeon a week from tomorrow for post op followup and I plan to tell him about the Dr Kato joke, and will suggest that he tell Dr Kato, “Well, it looks like I’m the only surgeon to operate on Mr. Wilde who washes his hands.” I’m sure they’ll both get a good yuk from this!
I was operated on a little over two years ago with a successful resection done by a brilliant surgeon Dr. Tomoaki Kato at NY Presbyterian. Dr. Kato has done successful surgeries on patients who were given no hope whatsoever by others. He has established a reputation as the surgeon of last resort for many of his patients. I was a high risk patient for a number of reasons, yet he took me as a patient, had some problems during the surgery, but I had a good outcome. My friend Kim was turned away by four hospitals as ‘inoperable’ before seeing Dr. Kato. She’s now almost a year out from a successful ex-vivo procedure, much more elegant and difficult than my operation. You may want to consider getting an opinion from him at some point.
There is complete contact info under the “hospitals” link under my name. Good luck in your treatment
Lainy, those lady docs are really watching out for me. My dear Dr Lee was there waiting for me to come out of surgery, this time ~ 1PM, but she was there after 9 PM two years ago. There’s a decent chance this latest deal is not cc, but we should know next week. I’ve been totally blessed with some very special caregivers and I love them all, techs, nurses and doctors alike.
OK, back in NJ now (Monday 5/23) UPDATE now back in MD Wed 5/25 — no internet until today … lung surgery was WAY more difficult than expected, but clean margins. problems prevented posting until today. There’s always a kicker, though. Now it’s the final path report. I expect that next week. Saw my amigo Dr Kato on Sat (just a chance encounter). He and Dr Sonett are running buddies.
Dr Kato said:
2001 big heart surgery … big infection
2009 big liver surgery (Dr Kato)… very big infection
2011 lung surgery (Dr Sonett) … infectionVery, very funny … ha ha ha
I plan to tell Dr Sonett:
2001 big heart surgery … big infection
2009 big liver surgery (Dr Kato)… very big infection
2011 lung surgery (Dr Sonett) … NO infection
and tell him to lay this back on Dr Kato.Thank you all for your support during this latest challenge. I’ll let all know path results and start a new thread, depending on the news.
Jules, for what it’s worth, my onc told me some time ago, there’s no evidence of any genetic or inherited link with cc.
Where are you located and what hospital are you dealing with to get a diagnosis for yourself? People experienced with cc usually don’t have much trouble getting it right and after a CT, an ERCP is typically ordered. You don’t want this done in a small or regional hospital, since a poorly done ERCP can cause lots of problems.
Keep us posted and good luck.
Another update.
Has a CT yesterday 5/17/11 and mostly good news … no sign of cc anywhere, but the lung feature is a little larger than the 1/11 PET, so surgery tomorrow 5/19 at Columbia Presbyterian in NYC with another superstar, Dr Joshua Sonett. The lung growth will require extraordinary care and skill, because it’s right up against the mammary artery used in a cardiac bypass ten years ago, but I think I’ve got the right surgeon. The path choices for this nodule are:
. adenoma (a benign growth)
. bronchioloalveolar carcinoma (a common slow growing malignanamt growth)
. cc (considered very unlikely due to the presentation)
We’ll see when the final path report is in.Tomorrow’s procedure is expected to be 1 to 3 hrs, will utilize a small TV camera and three small incision between ribs on the left side and 3 days in hospital likely. I’m not too worried, given the surgeon’s reputation, and elated to have an otherwise clean CT. This makes over two years and CC free. Also, I managed to get a few laughs from my onc today, Abby Siegel. I told her about Kim’s bedbugs and the overall itching! That’s an inside joke and I’ll say no more.
