Looking for a second opinion - Updated, again, and again

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

My mother is at the moment undergoing treatment with radiation and chemos. A whipple will be done after this summer, if the treatment has managed to schrink the tumour in the pancreas. Otherwise, it doesn't look good.
It seems to mee that in some countries, people are more reluctant to accept a diagnos from a doctor, who tells them that there is nothing left to do, and continue to look for a second, or even a third opinion from other doctors or oncologists. This is probibly related to cultur and other structural issues.
Here in Sweden, most of the healthcare is financed by the state, which theoretical means that everyone is entitled to the same quality in the treatment and has the same access to the expertice in different areas. The healthcare regarding cancer is fairly advanced in our country, but it's still a small place, which of course means that the amount of doctors and oncoligists that are specialized on cancer in the pancreas is limited. Therefor, I have decided to be proactive, and start to look for other oncologists, centre's or hospitals in other contries, that are known to be very good if not the best place to contact if you are suffering from cancer in the pancreas.
As I wrote, we are not there yet, there is still a small possibilty that the current treatment will be successful, but if thats not the case, I would like to be able to act fast.

Thats why I'm reaching out to you now. I would like everyone who has a name on a person (onologist/doctor/professor), a cancer centre, or other hospital that has a strong reputation when it comes to cancer in the pancreas, to post that information.

Best regards
Andreas

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 11

in the mid atlantic region of usa, i know of johns hopkins in baltimore area and fox chase in philadelphia area. best of luck.

westlake · New User Joined: 20 Jul 2006 Posts: 5

I know in Germany there is a polyclinic famous for treatment of pancreatic cancer. And I know the doctor. My email: shestli@126.com

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

I'm extremely happy to say that today when we went to the oncoligist for one of those crusial meetings, when they were going to tell us the results from the chemo- and radiation treatment that she took this summer, we were told that they are no longer able to find the tumour. It doesn't show up at all on the CT (originally it had the sixe of approx 3-4 cm), and they haven´t been able to locate any spread at all.

She will still be scheduled for a whipple, and we are perfectly aware of that this illness has a good capability to hide, but nevertheless, the treatment has so far been very effective. To sumarize: A Happy day!

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

It's been 1 month since the whipple was done. In addition to a standard whipple, they where also forced to remove a substansial amount of other tissue, because the tumour had grown into a main vessel that provided this area with blod.

The recovering from the extended whipple has so far been extremely hard and she has spend the entire time in hospital mostly in bed. She has lost 20 pounds during the last month in addition to the 20 punds she lost prior to the surgery. She is now slowly starting to eat and drink small amounts of ordinary food.

Yesterday we got the results from all the tissue that has been removed, and it actually looks very good. The tumour was completely dead as an effect of the chemos and radiation. No spread has been found at all. This leaves us in a very happy situation at the moment, and it means that she might be one of those very very few that actually survive this horrible deseace. On the other hand, we are still extremely awary of the chances that this cancer might return, although it doesn't show up at all at the moment.

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

This is wonderful news!!! Very Happy

Just in time for Christmas, too. I am so happy for you, sincerely. Don't think about it coming back, celebrate that it isn't here today. Live today and not what tomorrow might bring. You have your mom to take good care of. Get her back to her healthy frame. I can only wish that more people would have this positive outcome from their treatment.

Love/Appreciate/Celebrate her everyday!!!

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

Just an update:

It's been about eight months since the whipple was done and the situation for my mother is almost back to normal. She has gained weight, started to work again, and is fully capable of having a normal social life. She is also able to spend time on her own with her grandchild (my son), which is extremely important for her.
She is off all meds at the moment, with exception for the digestive pills. There are still occasions when pain reminds her of the whipple, often related to when she has eaten to much.

To this day, there are no signs that they didn't remove all of the cancer Very Happy

I will continue to keep you posted about the progress, since I believe this forum could use some more of "happy stories"

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

Just a brief update.

My mother is doing fine, working, spending time with friends and family. We just came back from a trip to Spain, a three-generation-family-trip, which was great, and an activity that was totally unrealistic a year ago, considering her health status at that time.

Almost a year and a half has past since she was diagnosed, and more then a year since the whipple was conducted. Last week her doctor told her that they didn't belive that she was going to make it after the whipple, but they choosed at that time to not adress it to us, which probibly was an good idea, considering the positive outcome.

She is still having some minor pain when she has eaten to much, which are side affects from the whipple, and of course, she is constantly on an higher "alert" level for signs that indicate a return of pc, but so far so good. She maybee not qualify as a long time survivor yet, but it surelly looks as she might, in the near feuture.

brainman

Vismund, you and your mother are truly amazing!! Over a year and a half since first diagnosed and she is making trips to Spain and making the most out of her life... that is wonderful. Thank you for the update.

My her health continue to be good.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tommygirl · New User Joined: 01 Oct 2007 Posts: 1

Hi Vismund,

That is terrific news. Unfortunately my mother has been diagnosed with the same cancer, size 2.6cm. The doctors in Ireland say it is inoperable as the tumour involves the main veins. They say chemo is unlikely to shrink the tumour to allow the Whipple procedure to proceed.

Your mothers case has given me great hope for seeking a second opinion. Would it be possible to give me details of the hospital where she was treated so that I may even seek a second opinion there? What type of chemo / radiation did she have? If you could email me in person it would be great ngdoherty@gmail.com

If anyone knows of other avenues for getting a second opinion I would be delighted to hear from them.

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

[quote="tommygirl"]Hi Vismund,

That is terrific news. Unfortunately my mother has been diagnosed with the same cancer, size 2.6cm. The doctors in Ireland say it is inoperable as the tumour involves the main veins. They say chemo is unlikely to shrink the tumour to allow the Whipple procedure to proceed.

Your mothers case has given me great hope for seeking a second opinion. Would it be possible to give me details of the hospital where she was treated so that I may even seek a second opinion there? What type of chemo / radiation did she have? If you could email me in person it would be great ngdoherty@gmail.com

If anyone knows of other avenues for getting a second opinion I would be delighted to hear from them.[/quote]

She was diagnosed in the beginning of May last year 849 yrs old), and it took us almost a month of restless waiting for an answer from the doctors, that fortunatelly told us, that they where going to give it a try. This "try" meant a combination of different treatments in three stages:

-The first stage consisted of a four week treatment with only chemo. At first, this stage was suppose to consist of two different chemos, but one of them made my mother to ill, and was therefore removed
-The second stage, which started right after the first one, consisted of both radiation and chemo, the radition treatment was conducted on a daily basis for a period of five weeks as well as the chemo. The drug ussed here was the same chemo used in stage one
-The third stage was the whipple procedure, which was conducted approx one month after stage two had ended, they told us that this delay was on purpose because the radiation treatment continues to work after your last visit.

Prior to the surgery the doctors conducted some major exams of the cancer area, just to make them sure that the most importent veins had been "released" by the tumour. If not, they weren't going to proceed with the whipple. The results from the exams were extremly good, because they weren't even able to locate any living cancer tissue after the treatments with chemo and radiation. This was of course a "green light" for the whipple.

The name of the hospital here in Sweden where she has been treated is Karolinska Institutet, which is the largest hospital in sweden with the most experienced doctors in this area. I belive that it´s poosible for you to seek out treatment in another country within the EU as a result of the treatment. Good Luck!

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

Just dropping in for a quick update!

Two years have past by since my mother was diagnosed, today the only sign from this vicious cancer is some minor side affects from the whipple procedure.
Besides that, she is living life as a perfectly normal person, and we are all appreciating this outcome without worring to much about the slightest cough or any other sign that could indicate a return of the cancer.
This cancer is a tough one for sure, but my mothers situation shows that there is hope.

corrdal · Regular Joined: 13 May 2008 Posts: 14

Hi Vismond

I have read your story and it sounds very promising. I am so glad your mum is ok and continues to be. My dad is now 3yrs after his whipple for ductal adenocarcinoma and received Xeloda afterward to treat anything that may have escaped. He now has a spread to his liver and we are trying to decide the next step. CAN YOU TELL ME WHAT TYPE OF CANCER YOUR MUM HAD as if it is the same type Ductal Adenocarcinoma then it may be feesible for my dad to persue the same treatment as your mum had. I live in London and therefore may have to go elsewhere if its not available here. Is it possible you could also advise the doses received.

Thank you

Corrina

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