Topic: Dr Jenkins feedback

Hello,

My mom was diagnosed with cc in the main bile about 2wks ago (she is 60yrs old).  She was told no surgery due to it growing up both sides where it forks toward the liver (klatskin tumor).  the tumor is only 2cm.  I saw that some people previously told no to surgery had luck with Dr. Jenkins in MA.  We live in southern Maine and are heading to Dana Farber tomorrow for a second opinion, but I was wondering if maybe we ought to get ahold of Dr. Jenkins as well?  Would he look at records and indicate if he thought he could help or would it require a visit for any info.?  I don't want to hold off treatment too long and end up in a worse situation (if possible...).

I get confused reading all the info. on cc because I had thought it was always in the bile duct, but it seems some treatments for cc only work on tumors in the liver?  Radio Frequency Ablation seemed to hold hope for me, but not for the bile ducts I guess.

Any guidance/hope/direction for maybe successful treatment for this type of tumor would be greatly appreciated!  I love my mom so much and can't imagine my young children not having their Nana around for a long time...

Thank you so much and hope and peace to you all.

Chris

Re: Dr Jenkins feedback

Chris,

From my dad's expereince a 2cm tumor would likely be a candidate for a radio frequent ablation (burn/freeze). Please add that to your list of treatments to inverstigate.

My dad's tumor was right over the bile ducts and artery so no surgery wither.

Bz

Re: Dr Jenkins feedback

Hi Chris.... If that is all they are seeing you could also ask about cyberknife radiation. this is known to be very precise and effective for small tumors.  They use it on brain tumors quite frequently.  Sure is no harm in asking.  They would have used on me but my tumors had become to large.  I went with 3-D conformal radiation instead and the areas treated responded very well no growth increase to date.  One treatment was directly to the liver its self. 3-4 weeks for about 5 minutes a day excluding weekends worked for me.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Dr Jenkins feedback

Thank you both for your responses, I will ask about both options tomorrow.  The oncologist is only scheduled for 30 minutes - he'll probably be kicking us out before I'm through with my questions - hope not...

I'll let you know what we find out.

Chris

5 (edited by marions Mon, 15 Oct 2007 00:34:16)

Re: Dr Jenkins feedback

Hello Chris,

Good luck tomorrow with your appointment.
In re: to another surgical opinion - it certainly will never hurt and can only help - when gathering as much information as possible.  Peter and I have posted in re: Dr. Jenkins.  Let us know if you need any help with making contact with him. 

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: Dr Jenkins feedback

Hi Chris,
  Your Mom's tumor sounds exactly like my husbands. A klatskin that had spread from the bifurcation into both ducts.They attempted surgery but felt they could not remove as much duct as would have been necessary for clear margins. He was diagnosed in June '06. He underwent 5 weeks of IMRT radiation therapy along with Xeloda followed by brachytherapy directly on the tumor. He has not had any treatment for a year now. His tumor is gone and has not recurred at all. There was some scar tissue which is visible but we have gotten scans at 2 different wonderful hospitals and they both agree that the tumor is gone. He is taking many different supplements and watching his diet etc which I have outlined in my introduction. I really believe all of it helps greatly. The problem that we were told about radio-frequency ablation and some other treatments is that they may cause the duct to perforate and then you would be in serious trouble. Be sure to get a second opinion about the surgery. Her tumor is a little bigger than my husbands was but they were very optimistic that they could remove it until they actually opened him up. They really can't tell sometimes until that point. Take care and best wishes. Mary

Re: Dr Jenkins feedback

Thank you both for your responses.  Marion, I had actually printed an older post in which you gave Dr. Jenkins' contact info. to someone else and I'm planning on contacting his office tomorrow in the morning before heading to Dana Farber.  Thank you for offering to help with that.  And I also have a post printed from you Mary, where you described your husband's success with bachytherapy.  I was happy to read of his success - the radiologist we saw here said he would see if my mom's tumor is amenable to brachytherapy if we can't do the surgery.

This community is a wonderful resource in many ways for all going through this.  Thank you!

Chris

8 (edited by Peter Mon, 15 Oct 2007 17:53:26)

Re: Dr Jenkins feedback

Chris,
I'm just returned from a short vacation but want to reiterate Marion's offer of help.  Dr Jenkins was wonderful for me.  He did a Klatskins resection when the tumor had spread to include part of my portal vein.    That was over 4 years ago.  You can find detailed posts under my name in the experiences section.
Dr Jenkins has looked at other patients imaging and reports  in the past and let them know if he felt it was worth their coming to Lahey for an apt.  I don't think he will be in the office next week.  Julie, his assistant, will be able to guide you.

Let us know if we can be of specific help.

-Peter

9 (edited by Luv4mom Tue, 16 Oct 2007 17:41:43)

Re: Dr Jenkins feedback

Thank you Peter for your response and offer of help.  I contacted Dr. Jenkins' office yesterday morning.  Dr. Jenkins is out for 2+ wks. but I was told to forward my mom's records and films and Dr. Lewis would look at them and see if he thought they could help - gosh I really hope they can.  The surgeon we met with at Dana Farber is having my mom do an additional MRI at their facility tomorrow.  She said my mom has an extra artery going to her left side of the liver that most people don't have and that that may make it possible to do the surgery, although she said it was a very small chance... She wanted to look further though before ruling surgery out.  The oncologist we saw gave her a prognosis of 8 to 14 mnths whereas before we were told to expect 2 maybe 3 years... so a mix of hope and dread from that visit.  So now we pray for surgery options from either there or Dr. Jenkins' office.  They also recommended the bracytherapy if surgery can't be done (as did the oncologist/radiation doctor(s) here).  I think I recall someone else here that had this similar artery too, although I read so many posts in my haste to gather as many good hopes as I could, it escapes me who it was...

Anyway, thanks to you all for your help and best wishes and prayers to you!

Chris