Though guidelines suggest screening starts at 50, researcher says it's premature to change them
by WU3119 on Sun Jan 09, 2011 10:57 PM
I had the Whipple procedure in November, 2010. The ampullary cancer was dicovered by accident. The only symptom was an incessant itching. However, my liver function panels (2)came back clear. A sonogram of my kidney showed dialated(sic) bile ducts. After a CT scan I had ERCP and biopsy of ampulla showed cancer. The surgery was "successful" and 19 lymph nodes were clean. The cancer was 2cm & stage 2. The mass had just started into the second level of tissue. I've had no pain and just started eating more fibrous food Jan. 2011.
I've been to the oncologists. the oncologist said it's a 50-50 decision(sic) on my part. If it werw Stage 1 he would say no chemo or radiation, if it werw Stae 3 he would definitely go the chemo and/ or radiation but given my stage 2 & the clearance of so many lymph nodes he'll leave the decision up to me. The radiation oncologist said I had 4 reasonable choices - no further treatment except to have scans & blood work done (watch the bilirubin?), chemo, radiation or chemo & radiation. My surgeon says go with chemo & radiation.
has any had this quandry? I'm to decide w/n the next 10 days.
by mhagg on Mon Jan 10, 2011 11:36 PM
here is a study that i hope will help
by nadine510 on Fri Jan 14, 2011 05:14 PM
Hi, my opinion is DO the radiation and chemo, my boyfriend had the whipple done as well, there were no infected lymph nodes or anything around the sight either, looked like they got all of it. The dr said he is pretty sure the cancer was gone but would like to use chemo and radiation just to make sure it does not come back, they want to treat this aggressivly . i know there are people that say well if they took the cancer out of me why do i need to do this... i honestly think it is just for your benefit, my boyfriend was a little confused with this as well but he decided to follow up with radiation and chemo.
he had other problems where his stomach was filling up with fluid so they had to go and drain it (not to big of a deal) but when they went to do this beforeheand the Dr sent him for a cat scan just to see how much fluid was in his stomach , well with this cat scan they found two spots on his lungs, now the dr said he is not 100% sure it is cancer but he has to go for a PET scan 2/7 to find out. needless to say this was very devistating news we are still hoping and praying that it is not cancer.
if i was you sir, i would just do the radiation and chemo, just to be on the safe side.
by hundred on Fri Jan 14, 2011 09:11 PM
I have been going thru this issue in my mind for the last 2.5 years. My dad who had his whipple in July 08 was stage 3 and they did not recommend chemo. He did perfectly fine till Jan '10, however, follow up CT showed an enlarged node and liver mets. He continues to do ok, but there is no agreement wether post whipple chemo is of any value. The truth is the oncologists do not have chemo that is designed for ampullary ca, they use chemo agents that are for colon ca and pancreatic cancer. The fact is that ampullary cancer is somwhere in between. there are many reports that show that post op chemo may not help, but these are small trials and do not mean anything either way. The fact that you had 17 clear lymp nodes is great as well. I guess my thoughts are that if you give your body a chance to completely recover from the whipple which does take a while you will be strong enough to handle chemo in the future if you need it. I hope you never need it!
by Whippleschmiple on Sun Jan 16, 2011 03:38 AM
I had a Whipple early July 2010 for stage 1B, 1.6 cm, 11 clean nodes, clean margins but high risk features. I knew my tissue type was intestinal. You can get more info off my previous posts. I had two opinions of whether to do adjuvant treatment. One said early, no need, but Boston doc said I had high risk features and should do it. Type of differentiation, whether or not perineural invasion, maybe whether lymph or venous invasion are added factors to make judgement. Later, all my docs said they would have done additional treatment too. Doesn't stage two mean it invaded the pancreas? Your choice, your future. Studies claim everything from little or no benefit to definite benefit of more treatment, I am banking on it to keep me cured. Examples I used were (since mine was intestinal) that for stage 2 colon cancer without risk features not usually recommended to do additional treatment, but same stage with high risk features, more likely to recommend it. Some related cancers like pancreatic have definite studies proving significan benefit from adjuvant treatment.
I did chemoradiation (3 day bookends 5FU bolus) and found it no big deal except fatigue last two weeks and about 2 weeks after. I never vomited and got constipated not the runs. I was fit prior to sudden onset of illness and did very well with surgery too. If pancreatic tissue type often seem to use things like Gemzar, and if intestinal tissue type then more likely 5FU/leucovorin or Xeloda, and maybe Oxaliplatin if more advanced. I just finished 2nd round of 6 of Xeloda and I got dehydrated, hand-foot syndrome and will get a week rest then lower dose 25%. I am chronically on low dose steroids so was more prone to dehydration anyway. I was stubborn about lowering the dose sooner. Anyone on Xeloda should consider with doc advice B6 and lots of udderly smooth cream and cushioned sandles if feet act up. The syndrome is clearing up quickly. If I had my stage 1 with well differentiated and no risk features I probably would have just done surgery. If stage 2 means pancreatic invasion, that would have worried me. The drugs are potent but the recurrence unless well diff stage 1 is a problem for too many. Good luck in your decision, and I would answer any more questions if you think I could be of any advice to you. We all have to make our own choice as risk both ways. I did speak to a 14/15 year survivor with stage 2 who did chemoradiation round one only but I wouldn't advise for or against that. Each of us has different features.
by WU3119 on Sun Jan 16, 2011 04:36 AM
Thank you. I'm assuming he had not begun chemo/radiation when they discovered the lung spots. Will he now be able to do chemo/radiation that would address the spots.
by WU3119 on Sun Jan 16, 2011 04:48 AM
Thank you so much. My oncologist said he presentd my case Hospital tumor review panel 9about 20 doctors) and there was NO consensous b/c of the absence of any trials. This remains a dilemma for me.
by Whippleschmiple on Mon Jan 17, 2011 04:22 AM
When I said I had two differnet opinions, I meant my tumor board (large group) voted not to do it. After my second opinion and my decision, most all from the board said they would have done it and wanted their wives to do it whether or not proof it would help or was needed. The Boston doc said doing it was his gut feeling. The problem is the rarity of the cancer, the lack of studies, which frustrates I am sure all of us. They also cannot promise us if it makes 0-3-10-13-20% difference, depending on the article. My hospital said if it had been in my nodes and pancreas, free ticket to treatment. Risk with radiation and chemo though I felt it was a lot less than not doing more treatment. Again an individual choice. The articles imply too many recurrences sometimes even in early stages, so I saw aggressiveness as my choice and if I ever get any other issues, that is my approach. I also emailed USC which had a site about ampullary, and made a few more calls and was getting feedback I was making the right choice for ME. I was in your confused shoes only a few months ago. Did your biopsy say venous or lymph or perineural invasion? Did it say type of differentiation, like well, moderate, poor? Those factors matter too. J in NH
by nadine510 on Mon Jan 17, 2011 11:31 AM
Yes he has begun radiation and chemo, well actually he completed his radiation he first had the 5fu- now he is on gemzar, they noticed his spots on his lung just the other day because they did a cat scan of his abdomen because he is retaining fluid, and the Dr wanted to see how much fluid was there before he had it tapped, and when reviewing the catr scan for that he happened to see the two spots, he said that they troubled him because of how long my boyfriend was sick before they even found the cancer, they first said he had pancreatic cancer... then after the whipple operation they examined it closer and said it was ampullary cancer not pancreatic that it is a much better prognosis. now we have to wait until feb 9th for the results of a pet scan to determine if those spots are cancer or something else. its really stinks we were so happy when the Dr said it was ampullary and they think they got all of the cancer that he should be around a long time, then to go and find this out its like we are back to square one :-(
by RayLogu on Mon Jan 17, 2011 12:26 PM
My ampullary mass was stage 4 / 2cm and one lymph node with cancer cells, although the margins of mass and all nodes was clear at time of surgery. it was the final pathology report that revealed the cancer. I took 6 weeks of xeloda (oral chemo) concurrent with daily radiation. I had some side effects from the xeloda and was able to complete 70% of the treatment. CT scan and tumor marker report came back negative in sept at conclusion of treatment, yet it was recommended I follow with gemzar. After much deliberation I declined the gemzar since there was no evidence of cancer remaining. Now 8 months post op and 4 months since last radiation/chemo, Jan 6 2011 my ct and tumor marker report is once again negative. I have gained strength and blood counts are finally coming back up from the damage from chemo and radiation. I believe I made the correct decision regarding no gemzar. I am age 77 and am hopeful that the fact I had toxcicty from xeloda means it gave me an extra punch of treatment and hopefully can live my life without any recurrence.
From what you describe sounds as though you are very fortunate to have had an early diagnosis. Weigh the odds, read alot and listen to others experiences. With all the info available you will made a decision that is right for your individual case.
my very best to you and your family!
Ray / NC
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.