In Need To Understand The Issues

Hello: I am a 69 year old relatively healthy male.  I am just passing my one year anniversary for tongue cancer and have basically been cured.  Last week during a follow up cat scan it was noted that a subcentimeter lession has appeared on the head of my pancreas. (I am scheduled for an MRI next week).  My internet searches have scared the H out of me.  IE; only surgury is a whipple,  immediate diabetes , very short term survivior history.  Can anyone advise me as to whether this info is as scary as I am taking it and any suggestions at all for going forward.  Thank you and God bless.  Ed 

Unfortunately what you are reading about pancreatic cancer is likely true - everyone is different - and I would try not to worry too much until you get a diagnoisis - but be vigilant - don't wait.

 The good news would be if you do have PC and it is caught early before spread or the tumor wrapping around the portal vein - the whipple could be a viable option for you.  If you are a candidate for the whipple  - that puts you in the "lucky" category.  Check out the info at johns hopkins - the site and forums are very helpful.

 http://pathology.jhu.edu/PANCREAS_CHAT/ 

Best wishes to you

 

On 3/31/2008 Ejw00100 wrote:

Hello: I am a 69 year old relatively healthy male.  I am just passing my one year anniversary for tongue cancer and have basically been cured.  Last week during a follow up cat scan it was noted that a subcentimeter lession has appeared on the head of my pancreas. (I am scheduled for an MRI next week).  My internet searches have scared the H out of me.  IE; only surgury is a whipple,  immediate diabetes , very short term survivior history.  Can anyone advise me as to whether this info is as scary as I am taking it and any suggestions at all for going forward.  Thank you and God bless.  Ed 

Hi Ed,  I know how scary this all may seem to you.  My Dad was diagnosed with pancreatic cancer in September 2005.  He was 65.  He was lucky enough to have the Whipple procedure.  In December 2005 we took him to MD Anderson in Houston.  The protocol was very hard on him and he was only able to have three weeks of treatment.  He returned home and after some recovery time he resumed chemo treatments for six months.  Dad remained cancer free for two and a half years.  Just recently they found metastatic liver cancer.  He is back on chemo(gemzar) and Tarceva. He is having the usual side effects from the Tarceva but overall is feeling well.  Contact MD Anderson for info.  They are very knowledgeable and helpful.  Will keep you in our prayers.  Please keep me updated.

 

I think all of us have reacted the same as you to the possibility of PC, once we started looking it up.  That's the bad part of the internet...you find out sometimes more than you wanted to know, and then the good part...you find out how to fight this cancer.  I'll second the person above who recommended the Johns Hopkins Chat site for info.  It is much more active than this site, and lots of long time survivors to read about and get answers, inspiration, and hope from.  I find I get more answers and quicker there, but check both places. 

I'll also second the recommendation of M D Anderson in Houston, although Johns Hopkins and Sloan Kettering have excellent reputations also.  You need a hospital that has lots of experience with the Whipple surgery, and who have surgeons who can deal with portal vein involvement, if need be,  You also need a place that, if you aren't a candidate for the Whipple at this time, will give you chemo and radiation and attempt to get you to the stage where a Whipple can be considered.   There are many people on this board and the JHU Chat room who were told initially that they couldn't have the Whipple because of metastasis, or portal vein involvement and have subsequently been able to have it later.  

My boyfriend, age 63, was diagnosed with adenocarcinoma on the head of the pancreas in April 2007 and is being treated at M D Anderson Cancer Center in Houston.  We self-referred him through their website (www.mdanderson.org) and heard back from them very quickly, faxed them the tests, scans, etc and had an appointment in a week or so.  He had 5 wks of chemo and radiation, 5 weeks to recover, and then had the Whipple in Sept 2007.  Clean margins and no evidence of metastasis. 

He had 1/3 of his pancreas, 2 ft of his duodenum, his gall
bladder, and 1/3 of his stomach removed.  Recovery was slow and his
appetite was poor for a couple months afterwards, but now he is eating
very well, starting to run again, and is feeling very good.   Life has
returned to close to normal for him again. 

We live in NW Florida and we go back to Houston for follow up every 3 months. His next follow up  is in May....and as everyone hear will tell you, we all hold our breath at the follow up for the test results.  However, he has gained back 35 of the 60 lbs he lost and is doing great so far. 

 Having the Whipple does not automatically mean you will be a diabetic.  They don't take the entire pancreas, if they can help it, and  while almost everyone has to take digestive enzyme pills with food afterwards, most are not diabetics.  

Don't believe the statistics; remember you are a statistic of one.  In this case, knowledge is power, so get all you can get.  Don't let anyone tell you this is hopeless and to give up and settle for palliative care if you don't want to.  M D Anderson has a survivor named Bill who works as a volunteer.  You can talk to him if you go there...he's a 14 year survivor.

 Donna C in FL

Hello and God bless you too Ed. I don't see any other messages so far regarding alternative treatments and perhaps this is not an avenue you would be comfortable pursuing but knowledge is power and your research would not be complete without this knowledge. I and many others with a variety of cancers have had amazing results using only alternative protocols._____ Best regards______ Pancreatic cancer http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&d http://www.pancreatic.org/site/c.htJYJ8MPIwE/b.891939/k.E9BF http://www.dr-gonzalez.com/index.htm

On 3/31/2008 Ejw00100 wrote:

Hello: I am a 69 year old relatively healthy male.  I am just passing my one year anniversary for tongue cancer and have basically been cured.  Last week during a follow up cat scan it was noted that a subcentimeter lession has appeared on the head of my pancreas. (I am scheduled for an MRI next week).  My internet searches have scared the H out of me.  IE; only surgury is a whipple,  immediate diabetes , very short term survivior history.  Can anyone advise me as to whether this info is as scary as I am taking it and any suggestions at all for going forward.  Thank you and God bless.  Ed 

I just want to say thank you to all of you who responded your replys lift my hopes.  I will let you know what comes of my MRI, by the way I am using Yale and I havn't seen them mentioned in this regard.  Thanks again.  Ed

I would add one other thing to my post to you, and everyone on the cancer boards will tell you the same thing.  Get a second opinion; particularly if you get a "can't do it"  from them about the Whipple,  you might even need to check with 3 places.  So many times people are told they can't have the Whipple and then go someplace else and are told they can have it done.  Just make sure they have a "go for the cure" attitude and are not for giving up.