Ampullary Cancer...survival rate?

My dad had a mass that needed to be removed at the bottom part of his bile duct.  The whipple procedure was done on Wednesday (sept.22).  The doctor's say the surgery went good and my dad is doing great (even though dad don't think so...)  We were told today that it was confirmed that he tested positive for Ampullary cancer and 2 of the 10 lymph nodes came back positive for cancer.  The doctor is giving my dad a month or two to recover from the surgery then off to the cancer doc we go to discuss chemo or whatever will need to be done.....Can anyone tell me how long the survival rate is?  Or what my family and I can expect next?  Best options?  Anyone been through this that can tell me about your experience....just feeling lost...my dad went from a big tough guy to a guy that can hardly get out of bed....

On Sep 25, 2010 9:28 PM MrsFitz wrote:

My dad had a mass that needed to be removed at the bottom part of his bile duct.  The whipple procedure was done on Wednesday (sept.22).  The doctor's say the surgery went good and my dad is doing great (even though dad don't think so...)  We were told today that it was confirmed that he tested positive for Ampullary cancer and 2 of the 10 lymph nodes came back positive for cancer.  The doctor is giving my dad a month or two to recover from the surgery then off to the cancer doc we go to discuss chemo or whatever will need to be done.....Can anyone tell me how long the survival rate is?  Or what my family and I can expect next?  Best options?  Anyone been through this that can tell me about your experience....just feeling lost...my dad went from a big tough guy to a guy that can hardly get out of bed....

Mrs. Fitz,

Try not to worry so much. I am a 4.5 yr ampullary cancer survivor who has had a whipple procedure. The main thing is how good your docs and hospital are in the area of GI oncology (ampullary/pancreatic). You should concentrate on the two positive lymph nodes to get them gone. Your dad will get well and has a good chance of surviving if chemo/radiation can remove positive nodes. Survival after a whipple can be normal with good surveillance and follow-up care--cts, etc. Sennekat

Thanks so much for replying Sennekat.  This whole thing is just very scary for us.  The two lymph nodes were removed during surgery so they are out.  My dad walked further then he ever has yesterday (very shakey at the end) and will be getting the epidural out today.  Positive thinking is how we are all getting through this.   After the doctor thinks my dad is recovered well enough that is when he will go see the oncology doc to discuss chemo options....did you receive chemo?  if yes, how does that effect you?  My family has been very blessed and this is the first major surgery or cancer that we've had...so that is why we are all still in shock over all of this....Thanks again for replying and I will let my dad know that his life will feel normal again one day..MrsFitz

Sennekat, if you did have Chemo...which chemo treatment did you go with and was your lymph nodes effected?

On Sep 27, 2010 9:49 AM MrsFitz wrote:

Thanks so much for replying Sennekat.  This whole thing is just very scary for us.  The two lymph nodes were removed during surgery so they are out.  My dad walked further then he ever has yesterday (very shakey at the end) and will be getting the epidural out today.  Positive thinking is how we are all getting through this.   After the doctor thinks my dad is recovered well enough that is when he will go see the oncology doc to discuss chemo options....did you receive chemo?  if yes, how does that effect you?  My family has been very blessed and this is the first major surgery or cancer that we've had...so that is why we are all still in shock over all of this....Thanks again for replying and I will let my dad know that his life will feel normal again one day..MrsFitz

Ms. Fitz,

So glad to hear that the nodes are out. Good job. Hopefully, your dad is up and walking around as much as possible. Also have him exercise his arms while in bed because when I was convalescing, both of my arms locked up when I started moving around again. I can't speak to chemo and radiation because I didn't have either. My tumor was about 3 cm and most of it was benign and the cancer had not traveled outside of the one site--no nodes and no margins. I have heard that folks get through chemo just fine...but check out which drugs he will be receiving and talk to folks who have had it. Let your father  know that ampullary cancer has a better survival rate than pancreatic. Try to keep him distracted, walk with him, play games with him, and get him as much info as possible. Cheers, Sennekat

On Sep 27, 2010 12:51 PM lovebird wrote:

Sennekat, if you did have Chemo...which chemo treatment did you go with and was your lymph nodes effected?

Lovebird,

Hi! My cancer was confined to one site so I was not given chemo or radiation. Some docs think that the remedies, in some cases, can cause more harm than good. This is a controversial area as some suvivors opt for chemo and radiation no matter how clean their tumors. What do your surgeons and oncologists recommend? What do hospitals like John Hopkins recommend? Good luck, Sennekat.

This is such a rare cancer that I don't use the survival statistics as a reference, I use HOW DO I FEEL and what the docs say about how I am doing.   I am now 4 months post op, having had whipple surgery for an ampullary mass at age 77.  I was other wise health prior to this and this was my first hospital stay.   I started chemo (Xeloda/pills) and radiation 8 weeks post op.  The Xeloda did cause a build up toxic effect so had to stop 2 weeks and restart at a lower dose.  I did complete the full 6 weeks of treatment with radiation and the interrupted oral chemo and 3 weeks since last treatment and I am feeling VERY GOOD.  I had one lymph node positive, and the mass in the ampulla of vater was also positive.  Although the margins taken at time of surgery were negative, so the cancer cells were in the interior of the mass and lymph node.  I have been told by all of my treating physicians this is the toughest surgery of all.  And They all say I am doing best of any whipple patient they've seen.

Keep a VERY close eye on your dad for signs of infection,  any swelling or warmness at sites of IV's and anything else that doesn't look quite right.  I was very fortunate to have a wonderful caring & careful staff for my care at Presbyterian Hopsital in Charlotte and made it through with no set-backs. I was fortunate that my wife was able to stay with me 24/7 during my 13 day hospital stay, it made life more comfortable to have her there for asisistance with emergency bathroom trips, knowing she was there made the wait on the nurses less stressful.  If someone can stay with your dad, I would highly recommend.  And he will no doubt need Depends undergarments to make the diahrrea less stressful.  the hospital size of one fits all with velcro creeps down to the knees when walking, best to get the depends with elastic / pull ups and have them on hand for when he starts eating and drinking and also when the feeding tube is put it he will also need them.  I went through 10 to 15 a day at times, I know that sounds like alot but the system goes through a shock when it is trying to gear back up to accept the tube feeding, liquids by mouth, etc.

I did have to come home with a feeding tube due to delayed gastric emptying which is very common.  My best advice is NO food for dad from outside the hospital.  Eat only what he is given and be certain he gets the right tray, pay attention to whether he is on clear liquids or full liquids.  The prescribed diet is critical to starting the digestion back up since it is now sleeping from surgery.  Walking is excellent for him, the more he walks the better his recovery will be.

And be prepared for an applaude when he passes gas, the hospital staff does celebrate passing GAS for the whipple patients. 

I was able to return to work 7 weeks after surgery, worked through the treatment cycle and still working my usual 4 hour a day part time work week, nothing strenous, I design textile machinery.  I find keeping the mind active is good therapy for recovery  .

you will find a wealth of caring people at this site and  find comfort in the sharing of information.  Feel free to contact me at my personal email:  topnotchplus@yahoo.com

my very best to you and your family!

regards,  Ray

Thank you so much Raylogu for your story.  My dad is doing great and already eating solid foods (mash potatoes, green beans, chicken, ect).  He didn't have a feeding tube.  They are just telling him to not over indulge and only eat until he feels full.  His surgery was Sept. 22 and they would have sent him home today (which we thought was way too early) , but they are having problems getting his drainage tube out, it's stuck?  The doctor tried to pull it out and my dad said it felt like the worse pain in the world and it felt like they were pulling his insides out.  So tomorrow they are doing a minor surgery to get that out....personally I am extremely upset at this because this should not of happened!  I mean hasn't he gone through enough already.  He tries to take atleast 3 walks down the hall a day.  Now from all the tugging on the drainage tube he is having pain from that.   Please add my sister as she is better explaining everything that is going on she is listed under "lovebird".  After they take the drainage tube out tomorrow they are saying that my dad can go home...this will only be 7 days after surgery, which doesn't seem right to me....I will keep you informed and I think that is wonderful that you are back to work!

Your Dad is remarkable, I am so glad he did not have the terrible problems eating that I had.  Most whipple patients do have the delayed gastric emptying, he one  very lucky guys!

 Tubes coming out usually don't hurt, it must have had some tissue seal around it, hopefully this is a minor thing and won't be a setback.  Just keep an eye on the healing of the site where the tube comes out.  I had a puss pocket form at one of my drain sites, nothing serious, no pain, and it showed up only after going home,  but did require an antibiotic to clear up.

7 days and going home will be great, what they look for is eating and holding food down, bowels and bladder working and no fever.  If all is working right his recovery will be much better in the comfort of his home.  More than likely the doc will order a home health nurse, I had one come to the house once a day to monitor healing of drain tube sites, tape blood pressure, temperature and be certain everything was ok.  Part of the home health was also for monitoring my wife's administration of the tube feeding, so if your Dad doesn't require that maybe he will be ok with only follow up doc office visits. Sounds like he may be up for nomination for the "whipple" poster patient with  the fastest recovery!

Stay close to your dad and comfort him through this, he will have periods of getting down a bit, but with love and support he will be ok.

my best to you and your family!  Regards, Ray

ps.  I can't find your sister lovebird, have her ask me to be added as a friend.

Hi Ray, sorry I didn't check this sooner.  Well his drainage tube is out, but he needed a minor surgery to get it out.  The doctor says that the tube had a manufacturing defect on it that caused the end of the tube to split.  When they were pulling on it the split end was scratching my dads stomach (nice huh? as if he hasn't been through enough).  He came home on Thursday and feels much better at home.  Yesterday my mom had to call the doctor because he had quite a bit of drainage coming out the top of his incesion.    The doc just said to put warm compresses on it and go to urgent care if he gets a fever over 101.  His feet and legs seemed to be swelled right now, so we are not sure why that is?  I believe his nurse is coming out on Monday.  I see what you are saying about staying close with him, he does get depressed about this and he hates feeling so weak all the time.  He told me yesterday that he didn't realize how bad this whipple procedure would be and he is glad he didn't because he don't know if he would've went through with it.    I will tell my sister to add you, because it is nice talking with someone that know what we are going through...I've told my dad about you and he is glad that you are doing well....talk to you soon.

Becky