I think first off get to a cancer center or if possible Cleveland Clinic. U didnt say where u live so its hatd to say. Good luck.

They live in New Zealand, so the Cleveland Clinic would be tough. I think more than a cancer center, they need someone who specializes in FAP, which has its own set of disease patterns and treatment protocols. I'll send a message to Chuckus, who is sort of our FAP resource here and ask him to weigh in.

 

This sounds like a tough one.

 

Jan

I’m so sorry to hear about the many problems your wife is having.  I was diagnosed with FAP 35 years ago and had j pouch surgery followed with annual scoping (upper and lower).  Since her surgeons do not want to operate, I suggest you search for one who has experience with complicated cases like your wife has.  The treatment needed would depend on where the cancer has spread (which you did not mention).  One possible surgery is the Whipple procedure in which the affected area of the duodenum and pancreas are removed.  I concur with Jeffsmom’s suggestion of the Cleveland Clinic, but understand that their location presents problems for you.  The Cleveland Clinic offers remote consultations using copies of your medical records to furnish sound medical/surgical advice.  I do not know how much they charge for this service, but it avoids having to travel to one of their locations in the USA.  Your wife is fortunate to have you for a care giver and advocate.  Hang in there, and best of luck to both of you.

Thank you all. i have emailed the clevland clinic with a description and to see what they can offer even though they are in america. there isnt much help here in new zealand unfortunalty which sucks. my wife is getting sicker by the day  and i do not like to see her go through this . so any advice is very helpful. the cancerous polips have spread to her durodenum  and the specialist said it wont be long till they spread else where . 

Hopefully Cleveland Clinic will give you information about treatments that can be performed in New Zealand and perhaps they can give you some doctor referrals.  Since cancer has been detected, it is essential to have it removed before it spreads to nearby organs.  A PET scan will usually identify locations where cancer is present and will help surgeons determine the appropriate course of action.  Please keep us posted.

With already a loss of large bowel and much small bowel, and now with what you are describing as probable metastatic cancer, I can certainly see why there are hesitations and limitations to your wife's situation.  Removing all or most of her small bowel when the probability of cancer elsewhere exists presents a major dilemma.

There may be more harm than good done, putting her through such an immense surgical procedure at such a debilitated state, plus she would likely never eat by mouth again, necessitating TPN for the rest of her life. Also, long term TPN as the only food source causes its own subset of problems. Liver, gall bladder, electrolyte, etc. issues can happen.

I used to work as an oncology nurse (still do some time in our cancer center), and I've been an ICU nurse for almost 2 decades, and just from your short story can certainly see why the docs are not offering a lot of interventions. At times, though, there can be some palliative care than can help increase a patient's time and comfort while they are suffering.

I agree that asking Cleveland Clinic for some ideas is worthwhile. If they seem to echo your team's thoughts on the situation, perhaps it'll give you some comfort that what will be will be. If they have some ideas, perhaps your team would be open to discussing them with their doctors, which can offer you some hope.

I am so sorry you and she are going through this, and I'm sorry she has had such a hard road. She is lucky to have you love and care for her as much as you do.

If it ends up that she truly has no better offers for her situation, I'd suggest maximizing her comfort by asking for a pain specialist who deals with metastatic cancer patients routinely. We do supportive care consults with a group of doctors and nurses who specialize in these types of situations at my work place. They do help, and certainly make a difference when started early.

Fingers crossed that CC has some ideas for your team to help alleviate your wife's pain and suffering.

Good day! I just saw this, would have responded quicker, but, well life gets in the way.

 

First of all, your doing a fantastic job trying as best you can to help your wife. You have my most sincere appreciation for that.

 

Secondly, it sounds like there are numerous things going on, and, well to put it bluntly maybe the medical staff isn't sure how to proceed OR rachelraven stated "It may be more harm than good"............having said that though I'd suggest a consult with Cleveland Clinic OR Mayo Clinic via virtual methods.........the sooner, the better.

 

Sounds to me like she needs "The Whipple" (google "The Whipple Procedure") which is a HUGE surgery and has the very real possibility of serious complications and you DO NOT want someone inexperienced doing that, at all, ever.

 

I'll chew on this some, see if I can come up with any more helpful ideas but I think some folks have already given you some great advice.

 

Can you come to the US for surgery, etc? I just don't know the logistics, etc... for that.......but if you can, you should. At the very least to get a hands on meeting with some of the top FAP Guru's in the world at either CC or Mayo Clinic.......

 

Best Regards,

 

Charlie aka Chuckus