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Are you eligible for surgery with vascular involvement?
My Dr wants to remove my entire pancreas spleen and stomach. I’ll be type 1 diabetic and have chronic diarrhea. I’m not sure about life expectancy but it sounds like quality of life will be low. I’ll take insulin every day and with every meal.
The weird part is my previous surgeon said nothing about this. Jus a normal Whipple. Then he tells me he’s passing me off and moving to Canada. I’m at the Mayo in Rochester which is supposed to be the best. I’m not sure what to do. If I have the surgery it can always come back and I’ll never be about to have chemo again. If I don’t have the surgery it’ll show up somewhere and I’ll have to have chemo and radiation again. I’ve already had 12 rounds of chemo and am currently on week two of three of radiation.
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Hi, I assume you mean eligible with blood vessel involvement? If so, then yes. I am in same boat as you. My local surgeon said absolutely not. Then I went to Dr Truty at Mayo, who specializes in this type of surgery. I will remove entire pancreas, gallbladder, spleen, part of stomach, and part of small intestine. He did have a very frank discussion with me about quality vs quantity of life after surgery. But because I am 40 years old with 2 elementary aged children, I choose quantity and will deal with recovery and diabetes and diarrhea. My surgery is scheduled for next month. Yes, I am terrified, but very excited to have had the opportunity to be seen at Mayo for a second opinion. I have done chemo and radiation as well.
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11 ReactionsDear Ashley,
You are faced with a difficult decision. But surely you are at one of the best centers that see this disease very very often.
Many people have had this surgery and never seen PCan appear again. Even after 10-15 years. Their stories can be found at the Seemafoundation website and probably at PANCAN.
So many other things to consider, including any other health concerns. I will pray for you that the Great Physician will bring you peace in this process.
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4 ReactionsHere is the story of Kay Kays who is a 29 year survivor of pancreatic cancer. She ended up having a total pancreatectomy and is thriving. exocrine Pancreas Insufficiency is managed with digestive enzymes and the diabetes with insulin. Kay serves as a patient research advocate and is active every Monday evening on the support group sponsored by the Seena Magowitz Foundation. Information on the support group meetings and how to participate is found on the website. Kay is very approachable and happy to share her story.
https://seenamagowitzfoundation.org/survivor-kay-kays/
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3 ReactionsI have seen many positive comments about Dr. Truty. Will he do a consult over the phone if I send my husband's medical records? Some hospitals, like MD Anderson, require a visit in person. I inquired about a clinical trial at MD ANderson,but they said we had to come in person, and being on the East Coast, the trip to TX would be too much for my husband at this point. If he does do phone consults, how long did people have to wait to get an appointment with him? Thanks in advance.
Dr. Truty is one of the top pancreatic surgeons. My advice to you is to call Mayo and find out and go there if he wants to see you. Patients come from all over the world to see him.
If you cannot get to Mayo but are within driving distance of Atlanta, there is a very esteemed surgeon here. Contact me directly if his information would be useful.
Hi there. Are you able to tell me this surgeon? Not sure how to contact you directly. My brother has been diagnosed Stage IV. No real symptoms besides indigestion for a couple weeks. He is 42 and has had his first round of folfirinox
Any help would be so appreciated. I look forward to chatting with you
I see Dr Truty at the Mayo on Rochester
Yes I see Dr Truty and trust him a lot. My surgery is scheduled August 29.
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1 Reactionk13,
I posted this previously - and, it relates not just to Mayo but given any center with the same capabilities.
If you have the ability to do so, once you have been accepted and understand the recommended treatment plan, and assuming you are not local to the center, and assuming it is something like the usual neoadjuvant approach ... relocate to that center. Move there and remain until your outcome is known. The lab work is better, the chemotherapy is better, the radiation treatments are better, the turnaround on information and modifications to treater is shorter, the pre/post op surgical care is better - the care is better because the people are better trained, deal specifically in pancreatic cancer. In summary, IMO, is that you have a better chance of survival.
My sister did not do this - and, while I don't know if it made a difference, I would have pushed much harder for this approach. As I noted previously, though, she was adamant about visiting the center, then returning home so she could be with her cats.