Topic: Cat scan result/shared website with doc.

Hi All,

I had my 3 month CAT scan/check-up today.  The good news is all of my blood work looks great.  The bad news is my surgeon can't say for sure what is causing an obstruction in my bile duct.  Maybe scar tissue or cancer.  I'll continue with montly labs and another CAT scan in 3 months.  I can't wrap my head around the uncertainty I need to get used to living with.  Its such a roller coaster ride. 

I talked to my doctor about this website.   He had never heard of the CC Fdn.  I gave him some brochures and asked him to pass them along to his patients.  He was very receptive and thanked me for telling him about this.  I would encourage everyone to get some brochures and pass them along to their doctors. 

Betsy

Re: Cat scan result/shared website with doc.

Hi Betsy, well that is partially good news. Can they not tell what is doing the blocking by an MRI or a PET Scan. You are so right that the best Amusement Park in the world cannot hold a candle to our ride!

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: Cat scan result/shared website with doc.

Betsy,
I second a different scan. Leroy is a beast of a tumor and STILL ONLY gets picked up on a PET scan. It is better to be safe than sorry. I try not to question to much on the IFS, if I would have had chemo after surgery, if my reoccurance had been discovered earlier. But the truth is my doctor thinks Leroy had been growing over a year before he was discovered. My treatment options are very limited now. There are so many more things you can do if it is caught early. I am NOT saying it is a reoccurance, just if it is it is better to konw sooner. I would definately ask for a PET scan.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cat scan result/shared website with doc.

Hi Guys,

Thanks for your posts.  I did have an MRI a couple of weeks ago to "image" the blockage.  At the time, the doctor said there was nothing "remarkable" about the MRI and to have my CAT scan done in October.  So, I've had a CAT scan and an MRI in the last 4 weeks.  My surgeon said because everything else looks good, i.e. blood work, weight gain, no jaundice, he was o.k. with waiting until my next scan to determine if anything needs to be done.  I am seeing my interventional radiologist next Wednesday for a consult re. the blockage and I will ask about the PET scan.  Haven't had one since last December.   Does anyone know when the tumor starts to change liver enzyme numbers?  Its seems to me I remember reading somthing about the tumor having to be a certain size before it starts to change liver function. 

Betsy

Re: Cat scan result/shared website with doc.

Betsy,
Not to scare you, but my bloodwork is fine and I have tumors in liver, stomach and lymph node.

And one is quite a doozy of a tumor.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cat scan result/shared website with doc.

Betsy,
    Kris is right. There are other people on here who have huge tumors and normal bloodwork. Kris I can't believe they don't see Leroy except with a pet scan. My husband has been getting MRIs every three -six months with no change showing but his tumor marker has been going up. I think I may ask if they will do a pet scan if it is even higher next month. Betsy, my husband has been receiving his treatrment at the James (OSU) in Columbus. His tumor went away after intensive radiation treatment and chemo. He has not had any treatment for three years now and is doing very well other than problems with scarring in his bile duct which causes obstruction at times. Why are they saying there is an obstruction of your bile duct? Can they actually see a mass or is your bili high? I don't quite understand. On my husband's scans they can see an area that they watch closely for any change from scan to scan. They actually took tissue biopsies of that area last February and thay came back negative. I think you should ask your Dr about having an ERCP to investigate. At OSU they have a camera device that actually can go in and take pictures during the ERCP. It helps to determine whether they are dealing with scar tissue or tumor and they can take a biopsy at the same time. I would worry about waiting three months to figure this all out. This cancer has a tendency to either be very fast moving or slow. My husband has been lucky to have the slow type but I still get antsy and worried if I feel they are not aggressive enough. This is worse than any rollercoaster ride I ever went on at Cedar Point!! HA! Take care, Mary

Re: Cat scan result/shared website with doc.

Good morning ladies. Teddy's is different yet. When his CA19 starts climbing I just know we are in trouble even though his Bili stays good. Sure enough we see his Radman the 23rd. When the doctor says they found a very small tumor but he still wants to chat with us, you know you are in trouble. So, we just have to hang in 1 more week. Stress? Who among us has stress?????
I am so thankful that we have aggressive doctors even though not much can be done for Teddy's type of CC. Could it be Leroy's son????

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: Cat scan result/shared website with doc.

Hi Mary,
Well, based on the MRI I had a couple of weeks ago, the bile duct was partially obstructed but my doctor wasn't too concerned and didn't see anything "remarkable."  When I saw him yesterday,  he said he can't say for sure what is causing the obstruction but that for now, he wanted me to see the radiologist and continue with labs.  My bilirubin count is well within normal range and my liver enzymes continue to fall, also tumor marker blood check is negative (when I was diagnosed with CC, all of my numbers were elevated and tumor marker test was positive.)   He did schedule a consult with my interventional radiologist next Wednesday and I will definately talk to him about the PET scan. 

Who the heck knows.  I get so confused trying to keep the facts straight and then to make matters worse, I add my own drama by trying to read between the lines.  I also feel like I've gotton all of my questions answered, only to come home and think of 20 new ones to ask.  Leaves me freakin' and geekin' most of the time! 

Betsy

Re: Cat scan result/shared website with doc.

Hi Betsy,
   I know most people think the world of their Drs but my Tom has one of the best around. I e-mailed him earlier this afternoon asking him about the PET scan idea and he already responded. He is a busy surgeon at a huge hospital! I can't believe the individual care Tom receives. It's always been unbelievable!! Anyway, he explained that the PET scan only has a 50% accuracy rate in terms of CC and that it would most likely show a false positive. He said they would follow up with an MRI or MRCP or a cholangiogram anyway if the PET scan did show something. Tom has always had MRIs and they seem to feel that is the best way of scanning. I don't know much about the technology but I know they questioned things in May so they did a repeat with different dye?, imaging?. something and it came back the same. We are hoping his numbers are up due to inflammation caused by obstruction. He has not had a stent in since February and I used to like the idea that they would go in every couple of months and have a look around. He's better off without them but he does get cholangitis once in a while and that could be the problem. This is a crazy ride but I guess all cancers are. My sister-in-law had breast cancer a year ago. Her chemo caused her to develop the most serious type of leukemia. She is in Cleveland Clinic right now with meningitis that was caused by the shunt put in her head to administer the chemo for the leukemia!! She almost died over the weekend but is doing better now. My brother was getting advise from me on being an advocate and had a real crash course the last few days. The more I talk to him it just seems like I'm reliving all that we went through 3 years ago and what you're going through now. You just have to stay calm and research as much as you can about supplements, foods etc and then do what you can to remain healthy and active. Stress is not good!
  I guess if I was you I would ask the radiologist about an ERCP and whether that would help to see what the blockage actually is. We had a great radiology oncologist and hopefully you will too. Take care and keep in touch.  Mary

Re: Cat scan result/shared website with doc.

Hi Mary,

Wow - thank you so much for your post.  I really, really appreciate it.  The last time I had a stent was in May 2009.   If my radiologist does anything, it will probably be a cholangiogram (blah).  I had stents and drainage bags from Feb. 09 - May 09.   That's interesting to know about MRIs compared to PET scans. 

I know I need to pick up the phone more often and just call my doctor and ask questions.   He gave me his cell phone number and said call anytime.  I just have to do it.  Maybe I'll try email like you. 

So sorry to hear about the struggle your sister-in-law is going through.  My goodness - I'm glad to hear she pulled through the weekend.   I don't remember if I mentioned this already, but all of my doctors are at the Cleveland Clinic.   If you don't mind me asking, who is your sister-in-law's oncologist?  I had a consultation with Dr. Pelley at Taussig re. chemo/radiation. 

I don't know - do you think the Dragster at Cedar Point compares to this ride?  smile

Betsy

Re: Cat scan result/shared website with doc.

Ok, did a quick looksy on Pubmed to check PET scans vs MRI or CT. It was a quicky, but from what I understand from the literature...there is not much statistical difference in PET and MRI scans in localised cc. However, lyphnode involvement and metasties were picked up better with a PET scan than other imaging techniques.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504390/
http://www.ncbi.nlm.nih.gov/pubmed/1817 … d_RVDocSum

In the same search, I found that MRI is generally considered better than CT, but I forgot to save the link. Sorry.

Hope this helps.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cat scan result/shared website with doc.

Hi Betsy,
   Yes, I knew you were at Cleveland Clinic. I really don't know who her Drs are. I'm not sure my brother really knows whose in charge half the time. Too many Drs. coming in and out!! I never rode the Dragster!! Ha! I'm too old for rollercoasters anymore. We went up about 6 or 7 years ago and I decided the Blue Streak was more my speed!  At least you never had to wait in line. Ha! Where are you from? We live south of Cleveland in the New Phillie area.
  Yes, I would pick up the phone or e-mail. If it will help you relax to have your questions answered then just ask. I don't worry about being a pain in the you know what. I learned early on that you had to keep on top of things. The Drs never seemed to mind my calls . In fact I think they appreciated the fact that I was educated about the disease and treatments. Tom never read or was concerned about things. He's always let me do the worrying, but I think that is good for him. I give you patients a lot of credit to be able to come on here and discuss things so openly and bravely. There's a lot of bad news on here at times but tons of support too!
  Kris,
   Everything is as clear as mud now. I have no idea what is best. I think it really depends on each Drs.opinion and experience. We went to Pittsburgh three years ago for a second opinion and they swore that "their" cat scans were the best. They said they had "invented?' them or at least a certain technique and they felt they had the best results. We will see what happens. If his tumor markers are continuing to rise we may just make a run back over to UPMC and see what they think. It never hurts to get a second opinion and a different perspective on things.
    Everybody have a good weekend. Is it snowing in Cleveland? We are selling pumpkins right now. I'm going to have to go out this weekend and wrap them in blankets to keep them from freezing!!!   Best wishes, Mary

Re: Cat scan result/shared website with doc.

Hi Mary,
I live east of Cleveland in the Chagrin Falls area.  How are the pumpkins?  Do you have a large patch?  NO snow as of yet but its pretty cold and cloudy.  I am getting ready to head out into the elements.  I am a pet sitter/dog walker. 
That's a good point you make about the doctors appreciating the fact you are educated about treatments and the disease.  I think mine was pleasantly surprised that I had taken the time out to do some of my own research.  I just get so weary of the whole process.   I guess if cancer is going to get me, its going to get me but I will try to dodge the bullet as long as I can. 
Hi Kris,
I will read those links you provided.  I've never been to PubMed website.  How are you feeling today?  What's the weather like where you are?
Betsy

Re: Cat scan result/shared website with doc.

Our surgeon insisted on a tri-phasic (3-D) CT scan.  Mary, is this what you are talking about? 
Good luck in keeping the pumpkins warm.
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: Cat scan result/shared website with doc.

I forgot to mention:  The CT scan in itself presents itself with a thickness of 1 cm therefore, anything less then 1 cm is not visible.  This again leads us to consider a physician very familiar with this cancer as he/she will be able to use his/her experience in determining progession of this disease.
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: Cat scan result/shared website with doc.

Betsy,
I am doing fine today. I have really worn myself out recently. I had a 6 hr round trip on Tues for chemo and then decided I was invincible and went on a 6 hr round trip business trip with Hans on Wednes. What was I thinking? Yesterday I recovered and today lazed around the house practicing wrapping scarves around my head. TBH, I feel kind of glamorous with the scarves, perhaps I should have looked into this precancer. Big earrings are a must with this look. I am shopping on the internet for more scarves now. I just bought 4 hats on Wednes and am ordering my wig on Monday. It is emotionally hard, but parts of it are entertaining to say the least.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cat scan result/shared website with doc.

Marion,
   I really don't know anything about  cat scans. I just know at the UPMC they insist theirs are the "best". They were sure that they would find something that OSU had missed with their MRIs. Luckily they didn't which reassured us greatly. That was almost three years ago so I think maybe Tom should go and get one of their"super" cat scans again.It has nothing to do with his Drs at OSU and our confidence in them, I just think it is good to get opinions from different sources.
  Yes, Betsy we have a large patch. We've been doing this for twenty years but are concentrating on produce and selling here at our farm more and more. I love having the kids here picking out their pumpkins. They like to come here instead of picking them out of a bin at WalMart! They are a lot of fun!!
  Good luck next week with your consultations. Being a dog walker is a good thing in my opinion. Tom spends most of his time outside, ecspecially in the warm months but even in winter and I really believe that has helped him too. All the nutrionists talk about needing vitamin D to battle cancer and other ailments, one look at him and you know he is not in need.   
                                        Take care, Mary