The Whipple's Procedure

[#1]

The Whipple's Procedure I am not going to talk about what this procedure is as anyone who is interested about the procedure can find heaps of info on the Internet about it, rather I will write about what we did and what was our selection process like before she did it, and what happened immediately after the procedure. 1] After learning about my partner's pancreatic cancer condition and what needed to be done about it we have made an appointment with the doctor who diagnosed her. I went on the Internet and have shortlisted the surgeons that we would be happy with to take charge of this procedure. The list of names was narrowed down to only 4. We have made appointments with all of them and when our first preference surgeon said that he could operate on her in 6 days (!!!) we were delighted. We have proceeded with all 4 appointments just to make sure all the corners were covered. 2] No matter what anyone says this surgery is very difficult and very painful (afterwards). We were lucky that the surgeon is among the top 5 in my city and that he has done yet another great job. We are very pleased with his work. He rang me and informed me about the results while she was still in the theater being stitched up. All the too important information was exchanged and I felt great. Not for long tough! 3] In the recovery room where I met her after the surgery I've realised she was experiencing an incredible pain. More accurately it was agony (see "7 days" the movie and you will know what I mean). The epidural and a whole cohort of other painkillers did not work much for about 3 long hours. Then it finally kicked in and the pain went down to 8/10. That was like winning the lottery. 4] The most intense and painful days from our experience were; - day 1 especially the first three hours (pain 10/10) - days 2-6 (pain 4-6/10) - days 7-9 when she was off the epidural (pain 10/10) - days 10-12 (pain 4-6/10) During days 7-9 we did not sleep at all. The pain was 10/10 (agony). While some people experience it better than others, she did not. She was not so lucky. But she handled it heroically! I would have died if I had to go through it myself. After being on so much medication (7 diff. painkillers) she started seeing little green people. She was in Matrix! Once the pain was alleviated she felt better. Much better. On a personal level - this was the most difficult part for me. Even more difficult than when I saw her in the recovery room some 7 days earlier. 5] Before surgery speak to your surgeon and INSIST on having the whole tumor saved and safely stored in their data bank. Why? Soon they will be able to routinely analyse it on a bio-molecular level as each patient will have customised post-operative therapy based on their specific circumstance and tumor genome. It can be stored indefinitely at your hospital at minimal or no cost to them. They will keep some cancer tissue anyhow but it may not be enough in case you need it at some latter stage. This was our only mistake. We have not done it. We have assumed the whole tumor would be saved after the surgery so we never posed the question. However, some tissue has been saved as that's the hospital's policy. Will it be enough for further testing? We are about to find out. 6] There has been a remarkable recovery for her. Since she left the hospital. She has been eating very well. Also, regular walks and yoga as well as 2 meditation sessions a day is a part of her daily regimen. Lots of resting in between. I will detail this out in my next post. 7] If you are about to do the Whipple's procedure make sure you have someone close stay with you at all times. Mark my words - you will need all the support you can get. You won't be able to think or talk due to being weak or in pain so if someone else is there for you he/she will represent you on all matters in question. You will need to rest as much as you can. If anyone needs more details please let me know. As I've turned into a temporary tenant during her stay in the hospital I've sussed out the cans and can nots.

[Kristella]

Hi DPC, It sounds like your partner is very strong, and is recovering very well. unfortunately my partner took 6 weeks in hospital, and 2 weeks later he is still very incapable of doing much. He is only young 31, and was quite fit. He is a smoker, but apart from that in very good health. Can you please tell me how on earth you discovered your partner had Pan Cancer before the Whipples Procedure? it was at least 3 MONTHS until we found out about his cancer, and that was only after the surgery. He had numerous blood tests, 3 endoscopys and nothing!! STUPIDITY! I can't understand why it wasn't detecterd earlier. it has now spread to his liver, and it makes me wander if they had done some thing about it when I was pushing and pushing 3 months ago, would we be in a different scenario today? He still has 4 drainage bags on him. He had to have two other procedures whilst he was in hospital to drain fluid off his liver. He still has the pig tail in his back draining the fluid. He is so tired (which I completely understand) hardly eats anything, I try so hard with healthy foods etc.

[#3]

Hi Kristella Our experience is somewhat different. She started complaining about some dull abdominal pain on the 7th Nov. 2010. We went to ER and claimed she was in severe pain. They took her. An EU was done and a sliding hernia was found so they concluded - it must be it. I've done my research on the Internet about any further complications with the hernia and surrounding area. I've learned quickly how to push the hernia down. She was relieved of the pain. However, a week or so latter she complained about the same pain again + she claimed her stool was unusually pale (light sandy colour) - just once. So, we repeated the ER scenario again. I started being suspicious that it may have something to do with her gallbladder or pancreas. So, when the docs said - "Nah, it's OK" - we insisted on a CT and MRI. This is when they realised there was something sus. They claimed it was IPMN and after further tests they realised it was adenocarcinoma. Six days later she was operated on. (Stage 2A R0, N0, MX) So far she has been OK. Only the last few days were a bit bumpy but nothing to do with the surgery, rather with malabsorption and urinal infection. Other than that, she went for walks around the block and even did some slow squats and triceps dips. Amazing! Do not blame yourself for not acting "quicker". I tend to believe this study; http://www.medicalnewstoday.com/articles/205995.php I have the full article on my hard drive and if you want I can send it to your email address. PM me if you'd like a copy. Your hubby must have been living with it for years rather than months. I am convinced that we have tracked down the exact incident some 20 years ago when this disease might have originated in my partner. You will see that soon they will start saying how PC isn't as aggressive as they assumed initially. The lady from Baltimore is one of the leading experts on PC. I've read every work she has ever published and think she is spot on. I hope he recovers soon!

[#4]

We went to see the surgeon today. He was very pleased with the progress. He has checked the incision and was happy with the way it healed. The next appointment with him is in 3 months or sooner if needed. Our concern still is some perineurial involvement as well as a high-grade panIN that was observed. It is still there but because this is a precursor condition to cancer (and because it may take years before it does anything) the decision was not to take it out as it would then require a total PD. He said - clear margins and no lymph nodes involved is the most encouraging thing at this stage. We hope chemo may help a bit with that. Even though there is no "perfect" cancer from surgical point of view this is as good as it can get.

[#5]

We went to see another oncologist today. After a good yak with them we are close to making our final decision about which team/institution will be in charge of this case. One more to go. That's on Monday. We are sticking to our initial plan - 3 surgeons and 3 oncologists - and then pick the one that seems to be "the one".

[#6]

We've picked the oncologist today. I recommend you shop around and negotiate before you decide who will be in charge of your treatment. I will point out what we have achieved just by assessing 3 oncologists rather than accepting anyone offered. - HD quality CT scan specific to pancreas (the other two did not want to do this as in their opinion it was not necessary) - a complete blood test including tumor markers before each treatment (the other two would not check for the tumor markers during the life of the treatment just the standard blood test) - a highly experienced oncologist (head of dept.) - home treatment - (saves waiting, traveling, parking and other cost) - a range of additional support - readiness to cooperate with other specialists/scientists we may want involved. - we were given honest answers to each and every question posed - willingness to re-test the cancer tissue and undertake any further tests that may be required (something the other two would not do). Chemo to commence in 2 weeks...