Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by muscles on Wed Mar 14, 2012 11:21 PM
First time posting. I do not have a cancer diagnosis. But need some input from others who may have experienced what I am headed toward. I do have an IPMN cyst in my pancreatic duct in the head of the pancreas. Having pancreatitis problems, pain and major discomfort. Drs feel a whipple procedure may be what I need to do. Having a 2nd ct scan at USC. Based on that, a recommendation will be made. I am scared to death of the possibility of the whipple. Anyone had one that you can shed some light on for me? I am an active 52 year old female. Gym owner and fitness trainer, spin and boot camp instructor. Healthy living. I am so afraid my life as I know it will never be the same again. I would appreciate any good, or not so good thoughts. Especially if it altered your life, job, physicality.
THanks so much for your time.......CB
by DavefromCT on Thu Mar 15, 2012 01:39 AM
Well -- I know your feeling... afraid your life as you know it won't be the same. I was 51 when I was diagnosed with PC. I developed pancreatitis after they did a biopsy and the pain associated with the pancreatitis made me want to take a pill and end it. I don't know what your discomfort level is with pancreatis. After getting passed that and having the Whipple, I thought the same as you. My Whipple went without any issues. I was in great shape at the time and my surgeon said that was going to make a huge difference with recovery. I have no pains from the Whipple and do strength training. Tonight I ran six miles... so I'm really in the best shape of my life at this point. As with any surgery, things may not go as you hope. I think the best thing I can advise is make sure you go to a surgeon who does lots of Whipples. Good luck on whatever you decide.
by Whippleschmiple on Thu Mar 15, 2012 02:57 AM
I underwent a pylorus preserving whipple at 53 (also female), I was very fit.... I sent you the befriend info as then you can look at my earlier postings. Some people do better with PPPD, others with classic. I think it was USC that I first found info. on the cancer and whipple. I have altered my eating... and was allowed back on my treadmill 2 mos. after the surgery. In the right hands, finding the right food mix, some do great. Will you be able to eat anything, some do after quite a while but my attitude is foods probably add to these cancers.
I had lost my job from a small company as it was hurt by the economy, but i went back to college full-time online even during radiation and chemo. I had related ampullary cancer (at door of pancreas and sometimes described as in it) and also know many other whipple survivors, one teaches at Harvard, another works full-time and has for years, some if old enough retire, others like me do not, don't want to and financially can't. Be more afraid of not preventing pancreatic or periampullary cancer or not treating a cancer immediately with the surgery. This is not a surgery to get just anywhere but high volume centers with high volume docs are best. Feel free to get a second opinion at a NCI or major cancer center too. Feel free to write me privately too. J in NH
by muscles on Thu Mar 15, 2012 04:08 AM
Thank you very much for your reply. I wasn't sure where to turn to ask people about this procedure until I found this site. However, since I do not have pc, I wasn't sure if it would be okay to reach out. But, glad I did. Have received a few replys, and every bit of information is helpful.
I feel as if I am in good hands. I met with the Division Chief of pancreatic surgery at USC. He seemed interested in my case, and wanted to make sure he had all details from past scans and tests, so I got him a disc with all previous tests to compare to the the CT scan he wants to do at the end of this week or next week.
Regarding the outcome of the surgery, I am not so concerned about the food part. As a fitness trainer, I already eat really well. No fats, No junk, No alcohol. I realize that I will need to clean it up even further, but I'm such a disciplined woman, that will be ok. What I am concerned about is length of recovery. As a business owner, and lead trainer at my gym, being away from work for weeks or months will be a huge hit on my family financially.
From a phyical point of view, I cannot imagine my life without fitness in it. It is what I do every day of my life. Maybe the intensity of what I will do will have to change, and I will have to be satisfied with light to moderate exercise vs high intensity crazy stuff. :) But, It may also affect the clientele base that I have as well.
Hard to think about starting over with something new at 52. But....have always wanted to write a book on fitness and never found the time to sit and do it. Maybe that time will be sooner than I think.
I greatly appreciate your time. I was told by the surgeon that removing the cyst and possible whipple will be the best way to prevent a future cancer, and also prevent the blockage of the common bile duct that it is near.
I am not jumping to conclusions yet, I know there are other surgical options depending on CT scan. Just getting informed.
Have a wonderful night!
by eyesurvived on Thu Mar 15, 2012 07:51 AM
The whipple is the 2nd roughest surgeries. 1st: Liver transplant.
I had the whipple in 2003. Rough, but the after effects have to be considered too.
I'm happy to have seen my 4 grandchildren, but food is now an enemy. It's must for survival, but most of it makes me sick -- horrible nausia and embassing diarhia. Restaurants are no longer entertaiment, but places where healthy people are irritated with my menu choices. There's no polite dinner convervsations to explain those choices, and the current extreme political divide brings (some jump to polical attacks) unwarranted hostility about menu choices.
I was age 53 when diagnosed. No, your life won't be the same. It my be better spiritually, you may find new avenues (I did) but it life won't be the same.
I'm high energy. Healthy peeps were amazed until 2011.
I lost about 5 lbs, each year after the whipple. Slow. I'm fighting to keep weight on at size 4-6 at a height of 5' 7.5.
by eyesurvived on Thu Mar 15, 2012 07:56 AM
Good report, but how long ago was this this this?
by eyesurvived on Thu Mar 15, 2012 08:10 AM
I'm not sure who you are addressing.
by eyesurvived on Thu Mar 15, 2012 08:29 AM
Cancer has become polical in so many ways. I live in a conservative area where people think cancer is self-imposed. They get mean about it, so my side-affects from surgery are rejected.
I've always done healthy eating. As a kid, I loved fruits and veggies, but gagged on red meat. Loved seafood -- even now, unless it's fried or is smoothered in butter.
As an adult, I did buy heavily into gardening chems & antique furniture rehab -- both suspects as causes.
I used to eat a lot of sweets, and I used to consume a lot of caffeine. Both are suspect. Both make me ill now.
by DavefromCT on Thu Mar 15, 2012 12:50 PM
My biggest issue was food digestion. Even though you eat right (which is good because fat is no friend when you've had the Whipple) I experienced bowel movements with no advanced warning until I started taking enzymes... literally a 5 second advanced warning. As for the Whipple itself, I was home in 5 days, and driving my car on day 7. I never experienced any pain for from the surgery. Since you're not supposed to lift heavy items for a period of time, that may be an issue for you in your business.
by janet10 on Thu Mar 15, 2012 01:32 PM
Wow....I know how you must be feeling now and happy that you don't have pc but you will get through this.
I was a 50 year old nurse, very active, in great physical shape, worked out with a trainer 2 times a weeks and ate healthy; so this was a total suprise for me.
I was fortunate enough that my cancer was caught early because I become jaundiced and symptomatic. My surgery was done at Sloan in NYC by a surgeon who has alot of experience with doing whipples. Hence, I believe help to contribute to my fast recovery.
If you need to have the whipple you will do well afterwards. They told me because I was in such great physical shape and my body was conditioned for the surgery I would have no problem recovering and they were correct.
Was out of the hospital in 6 days and back to work in 3 months while doing chemo.
It is a fact that your body will never be the same called the "new normal" and you will have to learn to make adjustments. The recovery is rough at first but not as bad as I thought it would be. You are going to have to watch and experiment with foods that you can tolerate. Taking enzymes will help so much.
I wish you the best of luck and if you need more advice or would like to speak please write.
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