Hélade Izabela

My Story is about Hélade Izabela

 

This event took place from 3/31/2021 to 11/21/2024

 

The Discovery

In January 2021, I had an attack of renal colic, an old acquaintance of mine, which alerted me to see a specialist again, so as not to have to spend days in the hospital, as we were still in the midst of the COVID-19 pandemic.
And in a finding, in a CT scan, the diagnosis of pancreatic cancer came.

As I trained and ate well, I would never think that weight loss would indicate any health issues. And I also stopped feeling hungry, another symptom that wouldn’t lead me to seek medical help, I didn’t have pain, or any other symptom, and I only discovered it due to a renal colic attack.
I underwent surgery in May 2021, a body-to-tail pancreatectomy, and after 2 months I needed radiotherapy, due to compromised margins after surgery. There were 30 sessions.

This is My Story

Many fears, anxieties, it was like seeing life come to a standstill and in an instant not knowing how or where to go. And the road is long, since the day I received the diagnosis 310 days passed, 10 months and 4 days of a real rollercoaster of feelings and a huge medical marathon I became a true onco athlete olimpica. And all stages are important, difficult and transformative, surgery, treatment, follow-up. Anxiety when exams, appointments, always deal with countless feelings. And getting back to life after all this avalanche is perhaps one of the biggest challenges. We will never be the same people as before of the diagnosis, this is a fact. But life is still there, the same life, and in front of that life a new being trying to find itself again and rebuild itself. Talking about this is important, to make the process less lonely, to understand this “new world”, to understand and find oneself and also to raise people’s awareness. Having the vision of the disease told by patients is extremely important, it validates our processes and feelings. And it helps to break down many taboos, myths and fears. Cancer is scary, it’s no joke, but it’s not the end, nor a death sentence, we are the greatest generation of survivors, and if every time a person shares their trajectory, serve as a warning so that a person can have an early diagnosis, we will be an even bigger group! Talking about prevention saves lives, because those who seek yes, yes, but whoever finds cures!

The Impact of Time

That’s why I always say, pay close attention to any unusual signs that appear on your body, maybe if it weren’t for the kidney stones, I wouldn’t be here today, telling my story, right? When I was diagnosed with pancreatic cancer I went through all kinds of “unnecessary things to say to a cancer patient”, ranging from the classic ones to the more specific ones, which involve the prognosis of pancreatic cancer and its stigma of non-survival. Even once doing tests, the “professional” who did the collection asked me why I was doing so many tests, since I visited the laboratory almost daily, I told her and talked about the anguish of not finding anyone who could talk about what was going on. going through, someone who had been through it, and could share their experience. She promptly replied that it was obvious, when it’s pancreatic cancer no one survives. Unfortunately, when we talk about pancreatic cancer we still hear many people wrongly say that there is no chance of surviving the diagnosis, due to the statistics and high mortality rates, thus carrying the stigma of “non-survival”. But you can’t just consider NUMBERS when talking about LIVES! And today, 3 years after the end of my treatment, I have already met several survivors living their lives to the fullest. We EXIST

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Don

My Story is about my dad, Don Anderson

 

This event took place from 6/01/2014 to 5/13/2015

 

The Discovery

June 1, 2014 my healthy 53 year old daddy had his first pain. The night before, he played in a garage band with a couple of his buddies and they had a great night playing for friends. Absolutely nothing was wrong. That changed in an instant. At the ED, we heard the words that changed our lives forever “a mass on the pancreas”. The hospital took a biopsy and didn’t get any positive cells so they said they had mistakenly diagnosed this and it was pancreatitis. They sent him home with suggestions on how to prevent flair ups. In the 3 months after that, he was in pain on and off where they diagnosed him with diabetes, did multiple ERCPs and a total of 7 tests before getting a positive cell.

This is My Story

At the end of August 2014, my boyfriend walked into my parents’ house to ask for my hand in marriage about 5 minutes after the doctor called him to deliver the news of the positive cells. We traveled back to Duke to meet with the surgeon with a surgery date 3 weeks away. September 10, 2014, my dad had the Whipple surgery done and a vein resection also had to be done. The surgeon told us the tumor was large and aggressive, adenocarcinoma. The surgeon told us there was a 90% chance, he would not make it. When this news was told to my dad, his response was I have a 10% chance. I can do this. He set the record for the fastest discharge after a Whipple at Duke. September 28, 2014, I got engaged and I knew I wanted to quickly get married because of his diagnosis. Friday, November 14, 2014 the day before my wedding, my mom called me and said my dad’s surgical incision had split open overnight and they were at Duke and his surgical oncology team wanted him to be admitted. It was important to my dad to be at my wedding, unfortunately I think we all knew what was ahead for him. They temporarily patched him up and sent him house with strict orders to come back to the hospital on Monday morning. We got married on November 15, 2014 and in the 2 months from my dad’s surgery to my wedding day, he lost so much weight and began to look so weak.
The radiation left him in so much pain and the chemotherapy pill that he took caused him nausea and vomiting daily. March 2015, the ascites started and my dad started going to the hospital twice a week to get it drained. We knew this was bad but we didn’t give up fighting for him and with him. By April 2015, he was so weak he could barely walk and he went back to the hospital where they admitted him and eventually sent him home on hospice. A former college football player, 54 years old now on his death bed. We watched him waste away into nothing but bones.  My brother, my mom, my husband, and I spent every day soaking up every moment we could with him. On May 13, 2015 my husband and I closed on our first home and I immediately went back to my parents’ house when we were finished. Less than an hour later, my daddy peacefully passed away with my mom, my brother, the hospice nurse, and myself by his side. 6 days before that, I asked him if he was ever scared through any of this. He told me no and that’s why having a strong faith is important. He told he was tired and he was ready to go. He told me all he ever wanted in life was to be a good husband, a good father, and a good provider. I assured him he had reached all his goals. He told me one day I was going to be a good mom. I found out I was pregnant 2 weeks later and my daughter which would have been my dad’s first grandchild was born exactly 8 months after he passed. My brother is now married to my dad’s hospice nurse. In the next 5 years, my dad’s 4 grandchildren were born. I have two girls and my brother a boy and a girl. We watched our dad be a father figure to so many people and he loved his friend’s grandchildren so much, it is devastating that pancreatic cancer took being a grandparent away from him. Losing my dad at 24 years old shifted my life in a way I will never recover from. My brother and I have each suffered with mental health struggles in the years since his death. Pancreatic cancer took the strongest man we have ever known and who we counted on.

The Impact of Time

If we just had more time, I wouldn’t have lost my dad less than 6 months after I was married. If we just had more time, I wouldn’t have planned my dad’s funeral at 24 years old. If we just had more time, he would have got to meet his first grandchild, my daughter, born exactly eight months after he passed away. If we just had more time, he would have been able to retire and live out his dream of moving to the beach.

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Giovanni

My Story is about Giovanni Lo Re

This is My Story

In memory of a dear friend-patient suffering from inoperable adenocarcinoma of the head of the pancreas.
After local and systemic conservative treatment, he had the strength and determination to maintain the stationarity of the disease through a slow and constant path.
Physical exercise positively influenced the stability of the disease, present but dormant, for a very long period of time, although this positive outcome is rare for a disease as serious as pancreatic cancer.
This very important concept was explored in depth during the presentation of his first book“Se cammino, vivo. Se di cancro si muore, pur si vive” during Pordenonelegge on sept 2018 . A first step that began a scientific study that led to the publication of an article “Physical exercise in locally advanced pancreatic adenocarcinoma: “If I walk, I live. Although one can die of cancer, now I am living” (J Cancer Metastasis Treat 2019;5:81).
He traveled 27,000 km and was very active, participating in meetings, including the World Pancreatic Cancer Day to Verona on November 2020. He has contributed to talking more and more about this disease with few effective treatments. His unique experience allowed him to confirm the importance of physical exercise on immune surveillance, which made it possible to obtain the stability of the disease for about 10 years of natural history.
Proof of this is the last book he wrote before he left us

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Kathleen

 

My Story is about My story is myself

 

This event took place from 10/10/2019 to 11/15/2023

 

The Discovery

It was discovered by my Gastro Doctor and my persistent. Because my oldest sister Gloria passed away from pancreatic cancer over 25 years ago because the doctors could not find out what was her problem was until it was too late and when they did it was stage 4. So it has always been on mind.
We both suffer with stomach issues. I was diagnosed with diverticulitis 4 years ago and I had the dr to check.my pancreas at that time and we found nothing. The pain started again on October 2019 and I ask my Gastro Dr. to send me some antibiotics for.7 days and the pain was still there so she decided to run more tests. I insisted that she check my pancreas again and there it was a spot on the tail of my pancreas. My doctor referred me to a surgeon who had performed surgery and removed my spleen, gallbladder and the tail of the pancreas. It was stage 1. I had to have 6 months of aggressive chemo and 6 weeks of radiation. I was treated like I had stage 4. Presently, I am Cancer Free and every 4 months I have to have a CAT scan done. Please listen to your body and be persistent with your Doctors. Make them dig in and find out whatever your problems may be. My sister had to die for me to live. I didn’t give up on me.

This is My Story

Listen and know your body.

The Impact of Time

Because of my sister having pancreas cancer it stayed on my mind and I was able to catch it in the early stage. My outlook has changed the way I look at and paid close attention toy body. It seems that after you have cancer you are always thinking something is going on with your body. So I have to been positive and remind myself that I am okay. I am.so blessed that God spared my lift and I feel that I have to share my story to help someone else. I am so glad that we are focusing on pancreatic cancer to detect it in its early stage. It can been done.

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Mary-Ann

My Story is about My husband, Alex Lopez

 

This event took place from 07/01/2018 to 09/20/2019

 

The Discovery

It was a very long and painful process for my husband before we got the final diagnosis that it was Pancreatic Cancer in January 2019.

Being a very fit man (training for the Hawaiian Triathlon), it was very odd and out of character that Alex started to suffer from severe stomach pains and indigestion. Medical investigations were carried out including, Endoscopies, Colonoscopies, Scans and MRI’s which were inconclusive, only showing some inflammation in the pancreas though nothing showing the cause.

Alex continued to get worse and on the 26th of November was admitted into hospital with pain that had become unbearable.

It was then discovered the liver was infected, and his bloods were showing markers for cancer and tumors.

Deterioration was swift and still no definitive result where the cancer was, though the Pancreas was where most likely.

Alex underwent major Whipple surgery in January 2019 where our worst fears were realized. The Metastasized Pancreatic Cancer was found in the lymph nodes so was automatically diagnosed as stage 4.

This is My Story

The next 8 months were a roller coaster where Alex endured months in hospital with multiple stays in Intensive Care and chemotherapy treatments. There was a short reprieve during this time, and Alex was able to live a relatively normal life during this time.

Sadly, it was only brief, and he lost his fight on the 20th of September 2019, after summoning enormous strength to be with me on my birthday on the 17th.

The Impact of Time

TIME IS IMPORTANT!

An experience such as what Alex went through makes you realise that time is very precious and every moment is a gift and should be treasured.

Time is equally important early in the process to diagnose and begin treating (if appropriate) the cancer as soon as possible.

We need more research into early detection so we can fight this insidious disease before it has a chance to take hold.

 

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Eric

 

My Story is about Me: Eric Borden

 

This event took place from 06/15/2017 to 08/14/2017

 

The Discovery

My story begins with bloodwork testing every three months for liver functions due to statin use. My liver enzymes were elevated for a few prior tests and my PCP tried to determine why. Off statins? Didn’t help. Hep C test? Didn’t show anything….He was confused. Throwing up his hands, he said, “Go for a CT scan. You never know what you may find.”

After the CT, I received a call one week later from someone in my PCP’s office. “Mr. Borden, The scan shows a lesion on your pancreas and it’s suggested you come back in one year to check it.” I phoned my GI who immediately schedules an EUS ultimately confirming an adenocarcinoma. Successful Whipple surgery was performed at Johns Hopkins by Dr. Christopher Wolfgang and Dr. Jin Hei on August 14, 2017. I’m a six year survivor!

My story is this: Be your own advocate! My PCP never reviewed my scan. That’s another story! But if I didn’t advocate for myself I wouldn’t be here writing this summary.

This is My Story

“Yes, I’m calling with your CAT scan results. You have a cystic lesion on your
pancreas of 1.7cm and we recommend follow up in one year.”

After receiving that phone call I immediately said “no way.” With results forwarded to my GI, he suggested an endoscopy with ultrasound to take a closer look. During that procedure and biopsy, it was discovered that I had a 95% chance of having a malignant tumor on my pancreas. I researched the best possible scenario and medical/surgical team ultimately deciding to go to Johns Hopkins in Baltimore for my surgery. Successful Whipple surgery was conducted on August 14 and I’m on the road to recovery with a six month chemo stint on the horizon.

Here’s the kicker: Because I was my own advocate my disease was caught very early. Imagine if I had listened to my internist and waited the year. You wouldn’t be reading about this topic nor would you possibly be reading about this next year! I took it upon myself to control my own health direction. Becoming your own advocate and knowing what would be best for you helps you direct your life in your own best interests. Becoming either complacent or relying on others’ opinions and directions may not be the best course of action for your life. Do what your instincts tell you. Don’t be shy about speaking up and taking control of
your particular situation.

You’re the most important person to you. Do your due diligence. You know yourself best. Trust your instincts and go with them and when it doesn’t feel right.

The Impact of Time

“Time is of the essence” seems so simple and obvious now. As I mentioned, if I did not immediately become my own advocate, I most likely would not be writing this summary. Time and my own self advocacy has given me time to continue to do the things I love, both personally and with my family. Time has also allowed me to add more time helping others.

For years I have been involved with many Pancreatic Cancer organizations and events…..PanCAN, Lustgarten, AFFPC, Project Purple, appearing on various news outlets to name a few, and volunteering at cancer centers to engage and help patients and their families go through the tough fight of a pancreatic cancer diagnosis. My message is this: “In business, hope is not a strategy. When dealing with a pancreatic cancer diagnosis, hope is the most important strategy to have!” None of this would have happened if my time was cut short.

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Isabella

My Story is about Isabella D’Elia

 

This event took place from 10/03/2018 to 11/17/2022

 

The Discovery

Jaundice

 

This is My Story

I wish everyone was lucky enough to have met an oncologist like mine.
I wish no one would meet a surgeon like the first one who evaluated my case.

I would have liked whoever operated on me to tell me clearly what my quality of life would be after the operation.
I would have liked spontaneous collaboration between specialists.
I wished that no mistakes were made but instead they did occur.
I would not like to be looked upon as a “living dead” or as a “rare fly”. I wish I didn’t put the nocturnal parenteral 6 nights out of seven…..
I would like to continue that the research was strengthened especially in prevention and oncological therapy.
I would like pancreatic cancer to become a “medical” and no longer a “surgical” tumor.

 

The Impact of Time

My diagnosis came when the pancreatic head tumor was already locally advanced and affected the mesenteric vessels, but no metastases were detected on the CT scan. Time immediately collapsed on me. Six months earlier I had done an ultrasound in a screening program provided by my insurance: “Normally all organs and systems” … This is how “time” immediately became a malignant category. I was wondering how it was possible that 6 months before I had a negative abdominal echo and six months later a locally advanced 3 cm adenocarcinoma of the head…And then again “the malignant time” when doctors told me the 5-year survival rates….

The time still malignant when, at the post chemo, radio and DCP first artery tac ( last july 2022 , next december 2022) checks, they told me that the
picture was negative for relapse of the disease , buy while I was enjoying the answer, I thougt together: “yes, but the more time passes, the closer you get perhaps to 5 years after the operation and you know that the survival percentages are 25/30% and you think, that’s it soon it’s my turn too….”

I’ve never seen time as a gift. I try to live “the now and now and here”. The Latins said “ibi et nunc”. If you’re sick now, it’s not yesterday or even tomorrow. If you’re fine as well. And then there is the time for planning which at the time of diagnosis you see as irrecoverable. Then, when you are decently, it resurfaces, comes forward and you try again . You set yourself small goals, and you see that you can succeed, or maybe then a sudden cholangitis messes everything up, and blows up the little big goal … Then it passes, you wait a bit and you try again …. you survive and sometimes you live.

 

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Dimitra

My Story is about my Dad, Panos Dimitrakopoulos

 

This event took place from 06/02/2020 to 04/07/2021

 

The Discovery

We discovered that our Dad was suffering from Pancreatic Cancer randomly, right after the first Covid quarantine. He had lost weight significantly but we thought it was due to a diet he had been on for some time. He had a feeling that something might be wrong as he was feeling gradually weak.

This is My Story

Right after the quarantine, he visited his cardiologist for the regular check-up and prescription. The cardiologist suggested that our dad should undergo some medical tests because our dad’s eyes had become yellowish.
On June 2, 2020 our cancer journey started. He was diagnosed with pancreatic cancer and by that time he had been considerably weak.
The tumor was big and on the head of pancreas, which made things dramatically bad. It could not be operated on and the health of our dad was so poor that he could undergo any treatment. We were told that he had up to 2 months.
God, though, had a different scheme. We found an experienced Oncologist and my dad had a stent implanted so that he could be relieved from the problems that jaundice had already created. Our dad regained his strength, the fatigue went away considerably and he was given some treatment; 6 rounds of chemo and 25 radiotherapies. The tumor shrank. His standard of living was good and hope rose again.

The Impact of Time

In February, 2021 the fatigue returned. At this point I have to talk about the bitter truth about the Medical System and Care in the region I live. It is nearly non- existent. Patients with cancer need to travel long distances to be hospitalised or given the proper treatment. Our doctor fought really hard to be able to import a treatment from USA. He never made it.
Our dad, who had been a devout Christian all his life, had set all his hopes to God. During all this time he got prepared, he was peaceful, calm and prayed. He did not want to live a day longer. His only wish was that we were peaceful, as well, and that he followed God’s will.
He passed away peacefully and serenely on April 7,2021, ten months after being diagnosed. My mum, my sister and I were present in the room and that is the most precious moment of my whole life.

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Bernadette

My Story is about Bernadette Lowe, my brother Mark Bishop, cousin Peter, friends Annie,Virginia and others

 

This event took place from 03/01/2016 to 11/23/2022

 

The Discovery

It was too late for my brother. In 2016 he went in for surgery but it was too advanced and he died 16 weeks later. They hadn’t given him a definitive diagnosis up to that point. He was 48.
I was diagnosed eventually after having a sense something wasn’t right in my body. This was 2019, it recurred this year in my lung.
Ultrasound, CT scan, eventually found lesion with MRCP after much pushing and a surgeon who listened. Diagnosed with Endoscopic Ultrasound biopsy of the tumour. Unfortunately not a cyst.
My cancer this year was found on routine surveillance ct scan however in hindsight was overlooked for 12 months.

 

This is My Story

I’m 57 and in Jan 2022 moved to the Adelaide Hills for a fresh start. I have a loving husband and 2 amazing children who are actually young adults.
I am 1 of 6 siblings. My brother Mark died of pancreas cancer in 2016, he was 48, adored father of 4, 16 weeks from diagnosis to when he died.
It shattered our world.

My 1st cousin Peter also died of pancreatic cancer while he was young also. In 2019 his ex girlfriend died of same disease.

I had this sense of dread after she died that didn’t go away so I told my doctor something was wrong in my body. Ultrasound and CT showed slightly dilated pancreatic duct. MRCP found a “lesion” ? Cyst ? Tumour but only tiny. Endoscopic Ultrasound and biopsy confirmed it to be cancer. Our world was shocked that this could happen to our family again. Chemo, Whipples and more chemo and I was given the all clear. I thought it was too good to be true that I could be so lucky and I felt guilt. Surveillance CTs every 3 months, 6 months until in June 2022 a tumour was found in my lung. Biopsy confirmed it to be metastatic pancreatic cancer.

Our world had already been shattered and shocked, this time we had no words. I’m still well with no symptoms but the chemo is knocking my bone marrow around because of the amount I’ve had in the past.
I’m on a clinical trial which has shown some success so it would be devastating if I can’t continue because the drugs have accumulated and become toxic. I’ve attributed my healing and positive outlook to the love and support of family and friends. And meditation, appreciation, mindfulness, prayers, healings, visualisation, kiniseology, yoga, walking, NLP etc etc.
My parents have already lost 2 sons and one sister had breast cancer, it’s cruel for them at 87 & 89 to have to go through such heartbreak when they are already do unwell themselves.

I never lost my hair in 2019 but it was disastrous this year resulting in a wig named Raquel. Then the eyebrows and eye lashes! In this time a dear friend was also diagnosed with Pancreatic cancer but unfortunately it was very complex and she passed away after 8 weeks. I have another dear friend battling this disease at the same time, and another and I’ve known several others who have also died of this insidious disease.
There’s just too much of it around. I’ve had genetic testing to no avail. And I guess my frustration is that why is there no research on why this is happening, researching environment, diet, etc etc
You’ve all heard the story of Erin Brokovich well imagine if something could be identified and managed the other end instead of waiting for it to happen and then all we have is chemotherapy which had its limitations.

 

The Impact of Time

Every day is a gift and I don’t know how many lessons i need in life to be reminded of this because we just get on that cycle of life, of being, doing, business even with cancer treatments.
So daily meditation and gratitude’s and appreciation help ground me. Trust your instinct and make sure you keep telling the Dr something isn’t right until they listen or seek another opinion. It’s so often overlooked and not the first thing they look for when it should be. Back pain and just a nightly tummy every now and then are common symptoms of pancreas cancer and overlooked again and again,

 

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Susan

My Story is about My beautiful Sister Cindy Rowland

 

This event took place from 09/04/2015 to 11/11/2015

 

The Discovery

My sister was working out of State. Her side had been giving her some discomfort. But, she wanted to wait to see a doctor back home in October. Her shoulder was hurting from an injury from a fall. She went to ER thinking that they could give her cortisone or something. They did blood work. Then more test. Diagnosed with Stage 4 Pancreatic Cancer and Liver Cancer.
She flew home. Had 2 chemo treatments but never left the hospital after second round.
I stayed by her bedside 5 weeks. She was such a good and healthy woman always. She was my mentor. I was her shadow. She took her last breath at 5:15a.m.11-11-2015. A wonderful life senseless ended. She had so many friends, family and co-workers who loved and adored her.
The world is a little less bright without her constant smile. Pancreatic Cancer sucks!

 

This is My Story

I would have traded my life for hers. I even begged God to take me not her. She was just 53 years old. She had a family that needed her. Since, her death 3 grandchildren have been born. Never to feel their Mimi holding them or singing to them in her beautiful voice.
I stayed in my house for 2 years pretty much after her death. Family members moved away. Holidays stopped. She was the glue that held our family together ❤️

 

The Impact of Time

We got robbed. She lived less than 2 months after diagnosis. I was so angry. Am.
My outlook on time after she died? She deserved so much more.

 

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