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Posts (9)

2 days ago · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

The Mayo Clinic in Jacksonville has two surgeons with arterial resection experience. One of them was scheduled to perform this on me in 2018 but my cancer miraculously broke up between the date of scheduling the surgery and actual surgery which was whipple procedure. I am now a 27 month survivor. Local oncologists and surgeons had told me to go home and get my affairs in order. Fortunately, I was able to locate the Mayo site explaining how the arterial resection is performed. I think they have at least one qualified surgeon at Rochester. I do not know about Phoenix.

Mon, Jul 27 4:44pm · Whipple procedure and follow up chemo in Pancreatic Cancer

I also have problems with Creon dosage, but as to gas, my doctors recommended I try either GasEx or Beano. I have had better luck with Beano, but either one helped control gas for me.

Sun, Jul 26 6:40pm · How to evaluate a cancer doctor? in Cancer

I would urge you to seek a second opinion. As noted in previous post by me, a local oncologist and surgeon advised me that my cancer was terminal as it was sitting on an artery. They failed to advise me that it was terminal as far as they were concerned because they were not qualified to provide the surgical treatment I needed. Fortunately, I refused to accept their prognosis and after computer search found that Mayo Clinic in Jacksonville, Florida had two surgeons qualified to perform the surgery. Their Rochester location also has qualified surgeons for this and I imagine Phoenix does. Even if you are not eligible for surgery, their treatment is outstanding. I had surgery in June, 2018; with recurrence of small localized tumor which was removed this April. My three month check up this week showed no sign of cancer. It might recur in the future, but I am already more than two years beyond where local doctors considered me terminal. Best wishes and prayers.

Tue, Mar 3 9:53pm · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

His local doctors might be correct, but if I had accepted my local doctors similar prognosis I would not be writing this. My tumor also was wrapped (slightly less than halfway) around an artery. Sometimes, as in my case, the local surgeons say it is inoperable because they do not have the skill, training or staff to perform the operation. I searched the internet for answers and found Mayo illustrated on their web site how an "arterial resection" was sometimes performed on tumors located on arteries. I went to Jacksonville for a second opinion and was advised my tumor was in fact operable by either of two surgeons there who perform this type surgery. I received five chemo treatments of Gemzar (gemcitabine) and Abraxane prior to surgery. Upon having an MRI done a day before surgery it was discovered that the tumor had almost miraculously broken up and arterial resection was not necessary. The Whipple was performed as scheduled and I was out of the clinic hospital unit in six days. The point is , however that the surgeon was capable of and originally planned to do an arterial resection. The local Oncologists and surgeon did not inform me that there were surgeons elsewhere who do in fact have the skill and facilities to perform arterial resections in some cases. I am currently three weeks from being a two year survivor.
If at all possible, I would strongly urge that your father get a second opinion at a renowned clinic such as Mayo. It is a very simple procedure. You do not have to have a doctor referral at Mayo. You are treated like family at Mayo, not just a statistic. Sorry for the length of this post, but I cannot over-emphasize the importance of having a second opinion from a qualified specialist in something that is this life-threatening.

Sun, Feb 9 5:06pm · How to evaluate a cancer doctor? in Cancer

You are so right. I was diagnosed with pancreatic cancer 22 months ago. Local (Mobile, Alabama) oncologists and surgeon told me there was no cure and no hope because the cancer was sitting on an artery. I insisted that they start chemo anyway and got on the computer to research my condition.I found that Mayo Clinic in Jacksonville, Florida had two surgeons who had the skill and training to frequently be able to operate on this type cancer. The local doctors had not told me there are surgeons scattered around the country (but none in Alabama) who are trained and qualified to do this surgery. I would strongly urge any patient who is told their condition is untreatable and hopeless to seek at least a second opinion. A seven hour drive to Jacksonville for a second opinion led to Dr. Stauffer at the Mayo Clinic who saved my life.

Mon, Jan 27 12:08pm · Total Pancreatectomy in Pancreatic Cancer

I am a 22 month survivor after Whipple surgery at Jax Mayo. I also am a retired lawyer. When I was actively practicing law I represented a few clients in disability issues. It was my experience that Social Security Disability employees almost always denied a claim on first filing but almost always approved it on re-filing. While you and I are at the moment in remission, we still have many issues from the surgery, chemo and radiation,which are a direct result of the cancer. You might want to consult a social security disability attorney to review your case. In my day, the lawyer did not charge a fee unless he or she was successful in getting the benefit approved.
I hope and pray that you and I both continue in remission. With some adjustments we can continue with our lives.

Dec 9, 2019 · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

I was diagnosed with pancreatic cancer in late April, 2007. My diagnosis came as result of awakening one morning with jaundiced skin. My wife and daughter insisted that I see my primary physician to determine cause. He initially suspected gall bladder, but did not feel right about that and asked me to enter hospital for more extensive tests. The tests confirmed that I had pancreatic cancer. A local surgeon stated the cancer was on an artery and could not be surgically removed. He estimated the cancer to be early stage 3. What he and the local oncologist failed to tell me was that there are a select few surgeons in this country who can sometimes perform this surgery, depending upon the exact nature of the arterial location. In addition, the next morning, while still in hospital, an oncologist contacted by my primary physician told me my cancer was "the worst of the worst and there was no cure". He added that I was "as old as dirt anyway". I was 82 at the time, but I had and still have three living siblings older than me and my dad lived to 97. My wife fired him that day.
I requested to start a chemotherapy regimen and I spent many hours researching on my computer and found that Mayo clinic not only had several surgeons qualified to perform arterial resection to remove the cancer, but they even showed a diagram of it on their website. I immediately contacted their Jacksonville, Florida clinic, which is about a seven hour drive from my home in south Alabama.
I requested and was granted an appointment with one of two surgeons at that clinic who is skilled in whipple procedures involving arterial resection. After MRI, CT scan and other testing, he advised I was a candidate for surgery. He suggested I complete six chemo treatments prior to surgery. When I returned for surgery, the chemo had broken up the arterial involvement (which the surgeon and oncologist both stated was very rare) and arterial resection was not necessary, He did perform the whipple procedure, and I tested cancer free in all quarterly check-ups during the first year following surgery. At my fifth check up a small spot appeared at the site of the surgery on the pancreas, but the surgeon and oncologist do not believe it is cancer, I am scheduled for follow up MRI on the 20th of December to see what further action, if any, needs to be taken,
I am urging everyone that I come into contact with to seek a second opinion from one of the leading cancer treatment centers if a local doctor diagnoses them as having cancer; especially pancreatic. I believe I read in Mayo literature that something like 80+ percent of patients who come to them for second opinion are found to have been misdiagnosed by their local doctor. After my surgery, I learned that there are several cancer clinics who have surgeons qualified to perform arterial resection with whipple surgery if needed. What upsets me most about my cancer other than the cancer itself is that the local oncologist admitted to me after my surgery that he was aware that there were surgeons in other states qualified to perform arterial resection surgery as part of the whipple surgery but neither he nor any of the other local doctors involved in my treatment told me about them. If I had not sought a second opinion on my own, I would not be typing this message today.

Jan 22, 2019 · Need Patient's Experience with Mayo Clinic. Is it worth it? in Visiting Mayo Clinic

Sounds like Rochester follows the same path of outstanding patient care as it little brother in Jacksonville.
Charles Erwin