Experience
- This topic has 11 replies, 8 voices, and was last updated 12 years, 7 months ago by
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Mark….to tell you not to worry will be fruitless. Awaiting scan results are anxiety producing for everyone. Hang in there. Your Dad is feeling great, has tons of energy – all are reasons for thinking positive.
Hugs,
MarionLeeAnn….CC cells are miniscule and cannot be detected by CT if less than 1cm in size. In fact I have been told that it takes 40 thousand cells for positive identification under a microscope. It is for this reason that only an open surgery can positively determine the extent of this disease. Tom, Marylloyd’s husband presented with rising CA 19-9’s into the thousands (for several years) before disease progression was recognized.
Obtaining a second opinion from a major cancer center treating a high amount of CC patients might be something you would want to consider. The larger centers see about 100 CC patients per year. If anything it will give you and your physicians peace of mind.
Hugs,
MarionHi,
CA19-9>129 is indicative of the presence of CC in general.
CA19-9>600 is associated with non-resectable CC.
CA19-9 is not typically elevated in nonmalignant diseases,however it can be elevated in some benign liver, renal diseases , thyroid and pulmonary diseases.CA19-9 cutoff point=35 or 37;(that is,The diagnostic accuracy.which relate to : the Sensitivity and specificity is =77.9% and 76.3%. )
The so called normal value is CA19-9 The CA19-9 is mostly used,when combined with other available tests (ie: CT scan,PET etc.) to show a trend for predicting the effectiveness of adjuvant treatments like after resection or chemotherapy;it may or may not be of benefit to different patients.
God bless.Lainy,
She’s the only GI specialist at UIC cancer center and has patients with CC.
I really like my surgeon and since they both working at the same hospital makes a lot easier to communicate with each other. Also I like that she consults with her peers and open for any sugguestions that I make. It is hard to decide based on just the numbers…LeeAnn, just a suggestion but perhaps you could just ask your ONC if she would feel more comfortable if you asked another ONC. Has your present ONC treated CC before?
Hi Jim,
I have been following your post since you’ve been talking about CA19-9.
My CA19-9 has been going up since Jan. I had sucessful resection last Nov with neg. margings and nodes so we(surgeon,onc, and myself) decided not to do chemoradiation. I had bloodworks every month and 2 CTs. Although nothing showed up on my CTs but the CA 19-9’s been going up.
Dec. 97
Jan. 74
Feb. 121
March 21, 216
March 27, 228
I met with onc. and radiation onc last week. My radiation onc doesn’t want to do anything since there’s nothing to go after and my onc wants to wait on my surgeon to discuss what to do next. My onc also mentioned AGAIN if I want to get a second opinion. Now that makes me wondering if she’s not comfortable treating my case…Anyway she’s going call me back Tuesday after talking to my surgeon. I guess I will decide what to do then…..Take care
Mark, glad to hear your dad is doing well. One of the nasty things about cholangio is its proclivity to recur. Just enjoy the good time while you have it. Consider it a gift.
Kris, I’ve already shipped the disc to Abby, my dear onc. She’ll have a NYP radiologist read it.
Jim,
My partner and I (Ben) live in South Florida – so I don’t consider it “regional”, however we have the same challenge with local radiologists here. Last year we had Ben’s (post chemo) scans sent to both Mayo Clinic (Rochester) where we had gone for the original diagnosis and MD Anderson (Houston) – for 2nd opinion. Both of them saw things on the local radiology scans that the local radiologists didn’t see.
Ben is halfway through his current chemo regimen (documented in my posts) and we went back to MD Anderson for their own scans. While they confirmed that everything is stable – they saw a blood clot in his thigh on their scans and on the local scans that nobody here caught!!!!
Anyway – I know second opinions and scans aren’t always an option but finding the right people who know CC is certainly important.
tom
Hi Jim,hope your doing well,do you remember me my dad has intrahepatic cc he had a total left lobectomy last year in April that was successful the surgeon could take out the tumor which was 11cm the he had a chemo just gemzar as prevention of any reccurence then had a hepatic MRI that showed no reccurant disease THANKS GOD,now he is having a new MRI tomorrow since 6 months to check if everything is fine,I’m so frustrated worried of the result,he is doing very fine actually he’s eating good and didn’t lose any weight and jogging everyday for half hour I hope that everything will be fine but just worried about the result ,any support from you will help me overcome the situation,what do you think? Can he have a reccurence if he is doing well and feeling healthy? Thanks in advance Jim God Bless you all,courage and fighting the disease is all our goal and we will do it.Mark)
Just got a new CT done at a local hospital. I asked the CT tech how many cases of cc she’d seen in the past year. I was numero uno! At that point, I thought it wise for her to alert the radiologist that I had cc, had a small cc feature removed from the rt lung, and that he would be looking for very small features (probably 2 to 4mm).
A compelling reason to avoid small or regional hospitals if you have cc or any other rare disease.
The radiology write up reflected this hospitals inexperience (very brief, nowhere close to the detail I’ve grown to expect from NY Presbyterian, and likely why they do not want their patients getting imaging done elsewhere.
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