My saved pages
My brother 56 has had symptoms, pain every time he eats for 4.5 years and been to doctors countless times and had every test during the same period.. the last CT scan before Christmas found a large tumor at the head of the pancreas. They still have not staged it but its now been 2 months while they give him more tests.. he is meeting with the doctor at end of week to discuss treatment and see if he would qualify for surgery. If yes its an 8 hour surgery. if no... well. My brother thinks he is going to have surgery and be back to work this summer and take his 10 year old daughter skiing in the mountains...My brother has not skied for years and taking up skiing after a whipple surgery is probably not going to happen but i cant tell him that.... i guess he is still in denial...
I suppose it still could be early stage, but he is buckled over in pain every time he eats and is exhausted napping during day, in bed early dragging himself around and very tired. The fact that he has had pain for years
i guess my question is why is the testing taking so long.I dont understand the symptoms and why this was not checked earlier. And now that it has been found why is it taking so long to stage
I would have the same concerns. Why is the testing and consults taking do long. When .h mom got diagnosised Feb 28 2017 the Drs at one particular hospital said they've referred it to specialist and she'll be seen mar 20th 2017. Well that was not acceptable as far as I was concern. I released her from that hospital and brought to the ER of where the appointment was made for in mar. They adnitted her asap and the tean if drs that we were supposed to see in mar we seen within 12hrs and we were in for the surgery in 2 days. Waiting 1 month while having PC just didn' make sense.
I am shocked by the delay - two months is far too long to wait to be proactive in my humble, non-medical background opinion.
With respect to your brother being in denial - please rethink that. I had the Whipple procedure one year ago. I went back to work six weeks after the Whipple and worked through chemotherapy/radiation therapy. I was training to do a 5k but unfortunately a calf injury has prevented me from completing any runs for quite a bit. Please don't discourage your brother regarding his goals. It might be his way of coping and making sure he is in the land of the living. The "I Can" mindset is not being in denial - it's "fighting mode". Setting goals is one of the most important things he can do if he is maintain a positive outlook - which he needs.
I've provided the link to a story of a gentleman who has stage four Pancreatic Cancer - his story is just one of many. And let's remember that Chris Rea has managed to survive 11 years - and was performing on stage not too long after his surgery.
Thanks for the link I will read through it. I guess there are lots of success stories.. unfortunately the internet is full of bad news... I am just guessing that they are not doing anything because they cant .... but thats silly until I know for sure. I guess im just scared to loose him. I would love to be proactive but he lives 5 provinces away so I am doing my best from here. I would never be negative with him or even suggestit could be worse than a rosey outlook.. you are right positive is the only way. Thats amazing you were up for a 5 km run so soon after surgery. Again im glad i am here because you dont read the success stories. This is good news for everyone
Can i ask about the pain in his stomach... its everytime he eats, he is bent over in pain and rolling on his bed in pain
My husband was also up and about and doing normal stuff not long after his whipples...we hiked and went on holidays in our caravan...if we'd been into skiing, there's no reason why he wouldn't have been able to do that.
The wait, in my opinion, is too long. I'd be on the phone asking for a sooner appointment...you coukd ask them to contact you with any cancellations if the can't bring the appointment forward.
I’m sure you’d never be anything but positive. The internet is ghastly with respect to certain information and will bring you down. Best to step away from it.
I wholeheartedly agree with Veema - time to get proactive and demanding. Too often we as patients are a little too patient. There’s nothing wrong with demanding better service or questioning wait times. They are after all providing a service. Squeaky wheel gets the oil. I live in the US but you can bet I’ve buttered up many of the medical staff with baked goods, homemade jams, etc. sounds awful, but it’s true. I always show my appreciation (they do have a tough, tough job) and then ask for stuff. I’ve also had to stay on top of insurance companies that have denied coverage, or delayed decisions. This is his life and he needs to be as proactive as possible.
With respect to the pain - yes, it was very bad especially as I got closer to surgery. I limited myself to an extremely low fat, soft food (chicken broths) diet in the weeks before my surgery simply because eating was most unpleasant if I pushed my system. I ate smaller meals throughout the day. That’s what worked for me to help a bit with the pain. Drinking lots of fluids also helped. I used a heating pad and tried to soothe my mind with relaxation music. Everyone is different though.
Once I had the surgery I did not experience the same pain - just pain from surgery. It wasn’t too bad. I also REALLY went easy on my system for quite a while. Your insides are quite beaten up after a Whipple. It is major surgery.
Your brother is so very lucky to have you in his life. You’re obviously a very caring individual. It will be a great support for him to have you by his side.
Feel free to ask as many questions - we are all here to help as best we can.
I’m sending positive thoughts to you and yours.
I also agree with Veema. When it comes to your life you don’t get second chances so you mmust take control and be firm. A friend of mine died of a pancreas cancer simply because his doctor made no effort to get an early appointment and waited too late. The surgeon told The family he could’ve helped him If you the doctor had heled him scheduling a few months earlier. It’s your brothers life not his doctor and he must take control and that said he won’t get a second chance
Well he received news today... they cant operate. He will meet with his doctor to discuss other options.
maybe they will try chemo to shrink the tumor...i guess its a waiting game
but if it can shrink the tumor then maybe surgery will work
My hubby had a whipple 4 weeks ago. He also gets a pain on his left side after certain foods. And lots of indigestion. We will ask cancer nurse next time we see her if she knows what it may be
Sorry he wasn’t offered surgery. Only 2% get offered. My hubby was lucky and had a whipple 4 weeks ago.
Good Luck with next steps.
Shrinking the tumor in order to perform surgery has worked. They will most likely either use Gemzar (US name) or they’ll go straight to 5FU. They’re are several options based on tumor, size, etc.
I’m very glad there’s an option for him. Not perhaps the news you’d hoped for but still a positive that there’s a plan of attack.
Thoughts with you.
After I had the Whipple I kept my diet extremely low fat and bland for quite a bit. It’s major surgery and your insides are bruised and battered. Broth, applesauce, pasta (no sauce), fruit cups in water (I know fresh fruit is great, but trust me fruit cups) mushy vegetables. (no grassy veggies) ice cream. Chicken - eggs, salmon. Things like that. Let the body heal. It takes a long time. Patience with food now will really help in the future.
My hubby had whipple end of January this year. He waited 7 weeks for operation. One of the lucky ones to be offered. Because they hadn’t seen how big his tumour grew in those 7 weeks- he had a keyhole camera put into look at it. If it had spread, they would of cancelled op
Still not sure what is happening with my brother.. he saw a doctor this week because he has blood clots... there will be no surgery and he still does not have an appointment with the chemotherapy doctor. No sessions of chemo booked. I'm the older sister always taking care of my little brother but He does not want me to step in and talk to anyone... and i really cant do anything what ever is going to happen will happen. it's just a waiting game... and I'm not very good at it... my heart goes out to everyone here...the family members and the survivors.... this cancer thingv realy is just the luck of the draw..
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.