Topic: Clean so far (sort of ...)

I'm going to be an optimist and post here.  I had a left hepatic lobe resection @ NY Presbyterian 4/09, and still showing no new signs of CC (I think).  The equivocation here is due to sharp eyed radiologists at NY Presbyterian who have commented in the SCAN reports about a slow growing small left lung feature.  Visited with an oncologist and surgeon this past week and everyone is in agreement that the growth needs to be removed.  It's a small, tapered helical thing somewhat like one of those outdoor lighted Xmas trees that can be collapsed flat.  So far the CA19-9's have been good (<20).

The surgeon, pulmonologist and oncologist have not seen a feature quite like this before.  The surgeon says there are three possibilities: 1) a recurrence of CC, 2) a malignant cancer, but unrelated to CC, or 3) a benign feature.  We won't know until the surgery which it is.  This would be a very simple, 20 minute surgery except the mammary artery, which was used in a cardiac bypass ten years ago, is right adjacent to the funky growth.  I hope the surgeon is a non-drinker with steady hands!

BTW, as a general comment, there's a big difference in the radiology reports from the NY Presbyterian SCANs and those done locally.  The ones from NY Pres comment on every unusual feature seen, while those done locally in MD are nowhere near as thorough.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

I am optimistic too! I am rooting for #3!! My thoughts and prayers are with you through your surgery. Keep us posted. Take care.
Nancy

Loving my husband from afar.

Re: Clean so far (sort of ...)

What a wonderful website.  Thanks for your good wishes, Nancy.
Jim

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim:  Hoping for the best outcome.  My prayers are with you!

Go with god and KEEP KICKIN' THAT cancer.

Margaret

Re: Clean so far (sort of ...)

Hi Jim and first of all Congrats on being almost a 2 year SURVIVOR. I am hoping it is none of the 3 but instead a small Xmas Tree light you didn't realize you swallowed. Just kidding! I know as we grow older, a lot of my friends and I included, have got nodules on our lungs that are just that. The doctors watch them but so far none of us have anything more than the  the nodule. Hopeing the same for you. Praying for a good outcome from your sugery.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clean so far (sort of ...)

Jim....good luck on the steady hand of the physcician and for these little extra lights to prove to be "nothing".
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clean so far (sort of ...)

Jim---Sending prayers to you and your surgeon! Benign is a beautiful word!

Re: Clean so far (sort of ...)

Jim, I too have two nodules in my lungs that they keep a sharp eye on, but they have not changed in a couple years and they feel they are the same that Lainy spoke of.  Try to relax and not worry until you know to worry.  (Yes, I know how hard that is!!!)

Good luck!
Sue

Today is a new day. Congratulations, you are already a survivor!

9 (edited by Jim Wilde Mon, 14 Feb 2011 11:20:47)

Re: Clean so far (sort of ...)

My biggest concern is about the surgical risk, rather than the growth, I guess because that's more immediate.  scragots, my growth has changed very little, but the doctor's collective concern is that it will become inoperative due to proximity to the mammary artery.  If that get's damaged, it's big trouble time since I have 35% cardiac muscle damage and cannot tolerate very much loss of function.

You just have to go on faith that the doctors have the necessary skills to deal with this stuff.  This surgery "seems" simple, but I guess it's not really.  When I see the surgeon next, I will ask him to do a diagram, since I don't fully understand the physiology.  The surgeon , Dr. Joshua Sonett, did a scar tissue clean up on Bill Clinton, following Clinton's by-pass surgery, so he comes highly recommended.

Thanks all for your kind wishes.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim,
From my experience, there is a good likelyhood that the growth is benign. During a routine CT scan several years ago there suddenly appeared "spots" in both lungs. The docs were fairly certain (80%) that these were mets and called for a biopsy. They biopsied a couple of spots in the left lung and though they didn't have a good explanation (scar tissue?) they were in fact benign. They then wanted to biopsy spots in the right lung which I refused. Over time they gradually disappeared. Prayers coming your way for the best outcome.

God Bless!

bob

Re: Clean so far (sort of ...)

Hi Jim,

Optimism, great, always good to hear! Hoping for the best possible outcome here and sending you a load of positive thoughts!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Clean so far (sort of ...)

Good to hear your story Jim although wishing you didn't need the 'sort of' qualification.
A friend who's a doctor said to me once 'you'd be very surprised if you saw just how steady the best surgeons can be, and they can keep at it for hours if need be'.  If your man comes recommended by the president then we're happy.
Good luck.

Re: Clean so far (sort of ...)

Katja, I rely on my flock of lady doctors at NY Presbyterian:

Dr Sun Hi Lee, cardiologist is the leader of the bunch.  I've known her for ten years.  She is involved in ALL my care there and helps in decision making and selecting other doctors.  I kid her about being my "loyal tour guide".  She was instrumental in diagnosing my CC, based on a routine liver function test with slightly over the reportable enzyme triggers.  No other doctor even noticed, or had the wrong interpretation.  I love her and she's become a friend!

Dr Abby Siegel, oncologist.  While I've only known her for the past few years, I continue to be impressed with her cancer knowledge.  Her practice is limited to digestive diseases.

Dr. Angela DiMango, pulmonologist.  This is the latest addition to my "flock".

These ladies discuss my situation regularly, as needed.  They're all friends and the latter two encountered Dr. Lee at Columbia Medical School, where Dr Lee continues on the faculty in cardiology.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Hey, watch it Jim, this is begining to sound like a Soap Opera with ALL My Ladies! Not to jest though it is so important for anyone to have the confidence in their doctors as you do.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

15 (edited by Jim Wilde Mon, 14 Feb 2011 17:51:49)

Re: Clean so far (sort of ...)

It's not a soap ... could have fooled me!  Lainy, they even tolerate my lame humor!  What more could one want???

Just got the CA 19-9 from 2/7 ... 19, I'll take that any day!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

16 (edited by Jim Wilde Thu, 24 Mar 2011 19:45:38)

Re: Clean so far (sort of ...)

One more odd thought.  I had a PET scan in January and they give an IV blast of glucose prior to initiating the scan, which is supposed to 'light up" any cancers.  Guess what?  The funky lung feature did not light up!  All the more reason for both caution and optimism.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

I had a feeling. Would that it be true!!!  You maybe were not plugged in?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clean so far (sort of ...)

Hey, come on, I've had so much radiation from scans I now glow in the dark!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim, I love your sense of humer, you are too funny.  If all else fails we could take our show on the road! We could call it The Comedy of Cancer. Not sure it would be a sell out though.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clean so far (sort of ...)

Lainy and Jim,  sounds like a show we would all buy tickets to see!  Laughter is good medicine.  HAHA

Re: Clean so far (sort of ...)

Life is too short to not have some fun along the way ...

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim-I think it is an omen you posted under "Good News". We are rooting and mostly praying for you!-Lots of prayers-Cathy

23 (edited by Jim Wilde Wed, 18 May 2011 13:36:55)

Re: Clean so far (sort of ...)

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.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim sending many good wishes and prayers for your surgery. I know you will get back to us on the results as soon as you are feeling better.  God speed and may he come to you through the hands of your surgeon!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clean so far (sort of ...)

Jim.....everything sound so positive that I am "almost" not worried about you.  Can't wait to hear the good report as soon as you are able to report back.  I will be thinking of you and am sending big hugs your way.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER