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Pancreatic Cancer

SF_2_EP
Posts: 3
Joined: Jun 2011

I have been searching the internet for a few months to find out about pancreatic cancer survivors and what is the longest a survivor has lived?
I myself had surgery last year for pancreatic cancer and after my surgery was told by the surgeon to get follow ups every three or four months based on the posibility that my cancer would return.
I did some research and what I found was not very good news, then today I found this website and there was some discussion about the very subject I am interested in, but it seems to be very scarce and selective.
The good news that I found however is that there is some survivors out there, and I read some of their stories that sort of gave me a sense of hope but then again pancreatic cancer is the number four killer in the cancer catagories.
It was predicted that this year alone about 44 thousand new patients in the United States would be diagnosed with pancreatic cancer, and that there has been not much funding for pancreatic cancer research in the past 40 years as the disease is on the rise.
So my worst fears continue, I would say that at times I am a nervous wreck I am aware that everyone has a different body chemistry and there are those few that might fair better than others in recovery and perhaps even becoming cancer free.
Considering that most pancreatic cancer patients dont live past their first year after diagnoses, and less than 12% are alive after 5 years so pancreatic cancer patients have a very low survival rate life expectancy.
On a percentage rate I wonder how many pancreatic cancer patients actually survive and if anyone such as the American Cancer Society keep track of such statistics?
I mean finding a blog with pancreatic cancer survivors is good news and I am happy for them, but to me it is like maybe going back forty years ago and asking how many survivors of the 1906 San Francisco Earthquake or Titanic survivors are out there if you get my point.
OK today is June 26 and I found out that the pancreatic cancer discussion thread is on the rare cancer or other cancers thread.
As I looked into most of the post made by a very few survivors, seems that their post were entered at a stagnate rate spread out through several years, so that seems pretty grim to me.
What I cant figure out is why would pancreatic cancer be classified as a rare cancer or other cancer when more than 40 thousand Americans are diagnosed with this disease every year?
I dont think this disease is being taken serious other than once you get it your fate is pretty much sealed, if for some reason one recovers or lives a few years long is nothing more than a miracle.
The bottom line is that there are hardly any survivors out there to keep an active discussion going, I am curious because after my surgery and as the surgeon told me about my follow ups getting ct scans every three months because there was a 30% chance that my cancer would come back.
I guess what he really was trying to tell me was that my cancer will be back, but he was saying it in a nice way.

Double Whammy's picture
Double Whammy
Posts: 2296
Joined: Jun 2010

I just wanted to let you know that last month I met a 6-year pancreatic cancer survivor. He was given 6 months to live 6 years ago. It does happen and I hope you remain cancer free.

I'm a breast and endometrial cancer survivor and since my diagnosis have become more "in tune" with what's going on in the cancer world. I just accompanied a neighbor (newly diagnosed with pancreatic cancer) for a second opinion at UCSF. There is considerable research being done there. Another friend just attended a fundraiser for pancreatic cancer in the Napa valley this past weekend. Unfortunately, we see far too few purple awareness ribbons, but I think that may be improving (or maybe I'm just paying more attention?). The breast cancer community has done an excellent job of raising awareness. I hope to see more awareness of the other cancers now.

My best wishes to you.
Suzanne

MrSoapmaker
Posts: 1
Joined: Oct 2011

My dad had the whipple procedure 10 years ago as is still going strong. Sure he lost weight, but overall not too bad to a guy who just celebrated his 83rd birthday! He recently had to give up bowling and golf (last 2 years), but that was probably more dependent on his age than his operation.

vinman_inc
Posts: 2
Joined: Jun 2012

Quadruple post, sorry

vinman_inc
Posts: 2
Joined: Jun 2012

My father-in-law had the Whipple procedure performed at Ohio State Univeristy 17 years ago (1995). He survived 17 years, passed away Monday, but not from cancer. Rarely did people believe me when I would tell them, but it 100% true. I am sad that he is gone, but grateful that his story can give others hope. Rest in peace, Charles Ingram.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I think survivor rates are improving for pancreatic cancer. Yours was operable so that's a good thing! As for what your doctor told you - I think what he's saying is - they'd prefer to catch a recurrance sooner than later. You may not have one - or if you do - maybe not for years - but bottom line - early detection is essential. I had three month checks with full scans after my intial cancer diagnosis/surgery (RCC) for the first year, then every six months until year five - when it returned. Then I was back to every three months again. I had five years again before it returned for the 2nd time.

I know it's scary - but I guess we have to take every little victory we can grab onto - celebrate what is (we're good for right now) - and deal with 'what might be' when and if that occurs.

Take care of yourself!

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

You are correct the survivor rates for all cancers are improving these days.

Hondo

po18guy
Posts: 239
Joined: Nov 2011

A co-worker contracted pancreatic cancer in 1982. By the strength of his will, he beat it. I remember him saying that he made himself eat the same diet and amount of food as he did before the diagnosis. It never came back. He survived two additional and different cancers (bone and colon), only to be defeated at age 77 by his fourth cancer - of the liver. He was a stalwart fellow and never let his first diagnosis, or any of the three following diagnoses discourage him. Had he been 10 years younger, he likely would also have defeated the liver cancer. An amazing story. Here is a link to his recent obituary: [content removed by site administrator]  May his story give you some much-needed hope. I have a completely different cancer, but was given a 'poor' prognosis in 2008, and a "very poor" prognosis in early 2009 upon relapse. Allow me to offer my encouragement.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Great story just goes to show what positive thinking and Faith can do.

Thanks for posting as we all need encouragement
Hondo

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I was diagnosed with stage IIIc ovarian cancer in 2009. I never asked my doctors about my prognosis. I wanted to focus on getting well, not the chances of non-survival. I had a worse than average experience after surgery and during treatment, but acheived remission in March of 2010. I know, from what I hear from others, that the chances of recurrance are high. I focus my attention, however, on an anti-cancer lifestyle and how to get my body as healthy as it can be. I also focus on things that give me joy. Maybe I'm in some sort of denial, but I keep the positive statistics in mind and erase the negative ones. I may or may not have a lot of years left, but I'd rather spend them enjoying life rather than worrying.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

I agree I love nothing as much as being happy; it is the best and cheapest medicine you can get. Here it to wishing you many many more wonderful years of joy.

Hondo

readcc
Posts: 1
Joined: Apr 2012

I was diagnosed with pancreatic cancer on December 25, 1993 at the age of 41. The tumor was in the head of the pancreas and had only spread to one lymph node. The Whipple procedure was successful. I am happy to announce that I am still doing well 18 years later !!

I will admit that every time Christmas rolls around, I get nervous and apprehensive. But God has been watching over me.

I would appreciate hearing from other pancreatic cancer survivors.

kletzy97
Posts: 1
Joined: May 2012

hi there,
it's hard to find pancreatic survivors.
i've been a survivor for 2 & 1/2 years, i feel lucky that i survived and i'm happy for every one that does survives.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Glad to have you here are a survivor welcome to the family

Hondo

Brucey1
Posts: 3
Joined: Jun 2012

Hey, I had my whipple done on 21st Oct 1999 at the age of 24. I'm now living life to the full again.

Doug 2
Posts: 1
Joined: Jul 2012

Hi Bruce Good to hear,where was the tumour situated Ive just now been told, and considering a whipple,what did you do after the whipple

Gladheart's picture
Gladheart
Posts: 1
Joined: Jun 2012

First, congratulations on making it to surgery! That is your gateway to survival. I, too, had surgery last year, Aug. 2011, for pancreatic cancer. It was advanced, stage 3. I have purposely not researched stats to see about long term survival, so was a little dismayed to read what you have discovered!

I would like to encourage you to look at life's sweetness, however. That has served me well in my efforts to regain a "normal" life. At least it is full of things I love, even though I can't do the things I could before cancer. (B.C.--seems like that long ago!) I figure if it does come back, at least this time will have been spent in joy and not fear. Every four months I am thrilled to get an all clear signal.

Hope you continue to recover. Hope it's in joy! Visit me at The Sweet Life: La Dolce Vita www.gaylemadden.com if you could use a little sweetness in your life. I would be honored to share with you.

Many blessings.

suziq210
Posts: 1
Joined: Nov 2012

We will be celebrating my mother's remission of 11 years this Friday. 11 years, wow that is the first I've seen it in writing and it kind of blew my mind. Her tumor consumed 3/4 of her pancreas and she was allergic to all treatment beyond the surgery. The doctor removed the tumor and told us all we could do was pray. She received a card from the cancer center in the area she lives that congratulated her for being a 0.05% survivor. That is half a % survivor! Amazing to say the least.
I want you to know that with a good support system and prayer nothing is impossible. Here lets look at that word... IMPOSSIBLE, I M Possible!!! Keep that in your heart and know there are people out here that are praying for you. God bless and keep you for many years to come.
Susan B

Rob82
Posts: 1
Joined: Jan 2013

Hi I saw your post post and thought i would share details of my mum expierence with pancreatic Cancer. Hopefully she can inspire people because she is certainly my insperation. So timeline as follows:

December 2002 After turning very jaundice was diagnosed with Pancreatic cancer

December 22nd 2002 She had the Whipple and was told it had spread through Lymph nodes. Doctors exact words were unfortunatly you have no rosy future.

December 6th 2006 when diagnosed with breast cancer had chemo followed by surgery then radiotherapy

July 2010 CT scan missed a tumour in her Lung

August 2011 CT scan found Tumour in Lung

September 2011 Diagnosed with secondary breast cancer in Lung

October 2011  Thoracotemy - to remove lower left lobe of the lung (around 40%) along with the tumour

i should add the being the fighter she is she was back to work by the end of november

December 2011 Spread to bones - Ribs & Pelvis

April 2012 More chemo

Sept 2012 More radio theropy

November 2012 Tumors much larger spread to 2 more ribs, 5 nodules in the other lung, tumour in the pelvis has spread to the socket joint, and tumour in the liver.

December started experimental drug Everolimus which should slow the spread.

hopefully in december she will become an 11 yearSurvivor.

Since she was first diagnosed she has fought it constantly, she has tried reiki healing even training in it i believe, she regually sees a chineese doctor for acupuncture etc along with many other methods to fight it.

Personally i dont know about that stuff but i think a positive attitude is the most important thing of all and can go a very long way, too this day she still goes to work in a high stressed job and just gets on with Living.

She is my insperation and the person i look up to most in life. I hope she gives others with this terrible disease the insperation and hope they rightfully deserve.

And im very much looking forward to making her a big cake to celebrate 11 years survival, because i dont know what i will do if she ever goes.

P.s. i apologise for my spelling.

don480
Posts: 1
Joined: May 2013

Hi guys I am new to this forum.  I have been a caregiver for my mother who is now 73 years young.  She was diagnosed with Pancreatic Cancer back in May of 2011.  it has been a long and exhausting battle for her and the radiation and chemo has taked its toll but she here with us today.  Cut a long story short.  My mother first was given chemo and radiation for about 6 months until the tumor shrunk.  Then they performed the whipple surgery and found in the pathology where they resected her pancreas some microscopic cancer tumors were possibly left behind so they decided to give her another cycle of chemotherapy.  After that the doctors performed a CT Scan and felt comfortable enough to stop administering chemo and decided to routinely every 3 months peform a CT scan.  It has been over a year and half since her surgery and now they found that possibly the cancer might have returned according to the last CT Scan and PET Scan.  Now they want to perform another CT guided needle point biopsy to determine for sure if its cancer again.  They mentioned something about the PET scan showing hyperactive.  We asked what options we have if it did return and they mention chemo and possibly radiation again.  My mother is really depressed again and doesn't know what to do next.  She would rather get another operation but they said it would be too risky for her but depending on what the surgeon says.  I am extremely worried for my mother.  It is nice to see that there is other long-term survivors and I will definitely be sharing this with her to give her hope.  I just wish I knew what the best thing to do to help my mother.  Do anyone have any recommendations?  For the long-term survivors what did they do differently?  Is there any new advances in medicine or technology I am not aware of?  Any new therapies I should be aware of? 

Thank you and God bless!

karishmarathore
Posts: 1
Joined: May 2013

Hi All,

Its nice to see so many positive response on this site. My father 61 yrs old had recently distal surgery in April month. He was having stage IIb- 10 cm long tumour on tail of pancreas, doctor has removed his tail of pancreas, spleen, kidney and wedge the stomach. My dad is doing good and he was discharged from hospital on 9 day of his operation.

My concern is his weight!, he is loosing too much of weight, almost lost 30 pounds and oncologist says once we start chemo or radiation, he will loose more. And what would be best to give first chemo or radiation? as we get opinions from differnet doctors everybody comes with new suggestion. Anybody having idea what is the role of nanotechnology in this?

And my question from long term surviors- how can i increase life span of my dad.Please reply me.

Thanks,

Karishma

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