I am a 67 yo WF of Ashkenazi Jewish descent. My mother died of PC at age 69, in 1979. She was diagnosed as stage 4 in January of that year and died in mid-April. I have had genetic testing done for the 'Ashkenazi Jewish' sites on the BrACA-2 gene, but they came out negative. There are other possible genes that are not regularly tested, so it's possible we would be a hit on one of those.
My PC story:
As 2007 progressed, I found I was tiring more easily, not able to do things I had been doing, but I, of course, attributed this to aging, etc. Then in late June I became very sick - it seemed like a stomach bug, but after a week I was jaundiced and we hoped for hepatitis or gallstones. Unfortunately, it wasn't either of those! Here's a sequence of the testing that was done leading up to my Whipple surgery on Aug 10, 2007.
1: visit to PCP - high fever, vomiting: go home, it's a bug that's going around 2. one week later (Monday): fever down, but otherwise conditions the same, some jaundice showing (with itching), urine is dark. Test for hepatitis, blood chemistries. It isn't hepatitis, and liver enzymes are abnormal. 3. Friday a.m. - ultrasound shows no gallstones, maybe sludge in bile duct 4. Friday p.m. EUCP with scrapings of bile duct, stent put in place. Scrapings are normal, enzymes are normal (turns out that I dont do CA19-9, so it's always normal (less than 2).
5.One week later: MRCP shows apparent mass in pancreas. Does not show stent - I am called back for quick X-ray to find the stent - it's still there.
6. EU FNA endoscopic ultrasound with fine needle aspiration. Biopsy shows no malignancy. Two doctors involved - one thinks it is pancreatitis since everything has been negative for PC, the other thinks it is PC because, '90% of the PC patients present this way'.
7. Surgery in 3 weeks - Whipple if PC, or just replumb bile duct if not. It was PC, late stage 1, surgery left positive margins.
From the accounts I've read here over the past year, this sequence of tests is not unusual, but there are many combinations and orders in which things can be done. It seems that often when there is a choice of tests, the doctor will chose the one he is most comfortable with. My current oncologist feels much more comfortable with CT than PET, but there are times a PET can be the best choice for an answer.
I had the interesting experience of having a wound-vac system used on my incision. This is a remarkable system that applies constant suction on the wound, and allows it to heal cleanly from the bottom. The dressing changes in the early stages are pretty painful (they always gave me painkillers an hour in advance), but the healing process was certainly impressive. Once I was home from the hospital a home health nurse came to change the dressing.
I was allowed a regular diet in the hospital after about 5 days - but the pleasure of food was pulled back a few days later. The original order was because it looked like everything would heal quickly, and then some problem areas developed, which eventually were drained. So I was fed through a J-tube and allowed only clear liquids for about 6 weeks.
In October we went to the JHU Multidisciplinary PC Clinic, and I would highly recommend that program to anyone who can qualify.
I hope this can be edited - I would like to write some more, but not right now.
Sandra Dec. 27, 2008 - clean for 14 months, but now I have mets to the
lungs, am doing Folfox chemo.