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Net Cancer Foundation is a safe community where you are able to share your thoughts and feelings about neuroendocrine cancer. Your story is invaluable to our foundation and those who read it. Share your own story with us to help spread awareness of NETs and to find a cure!
FOUNDER OF NETCF
Well, mine is kind of a trickster! I had a tumour in my appendix then removed by a right colon hemicoletomy. But then, I became very ill in which no doctors would believe me. It's all in your head, I don't know what to say Laura your lungs are horrible they are scar tissue but we can't explain it. Your asthma is becoming worse and your heart seems to be dropping very low blood pressure. But we see nothing , blood and urine is coming back in ok range. That is what makes mine a challenge because mine is now hiding .
I have The syndrome and it's taken over my body; but silly me I’m just the patient. I also have to travel to NJ to see a real carcinoid doctor. He believes that my other tumour is the size of a pin drop, a grain of sand even smaller. And it's hiding inside my scar tissue in my lungs. Another challenge that my oncologist In Erie Pa where I live who believes nothing is wrong with me, is now being run by the NJ the Carcinoid specialist. I only got to see a Carcinoid specialist because the Regional Cancer Center here release me through out the years... because they didn’t believe me. But they continue to fight with Dr Condemi in Teaneck NY at Holy Name Medical Oncology Center because they believe he is lying.
I have many respiratory failures, and my heart was filled with fluid. But Erie Pa wouldn’t do anything about this. Dr Condemi in which got ahold of us from The Carcinoid Foundation and told me to pack a bag and leave that day. We live 7-8 hours away from NJ, and it was a Friday. We left early that a.m. he had a team waiting for me, and I had emergency heart surgery that Sunday for the fluid in my heart, That drained for 3 full days. I was then placed on my Treatment of sub-q shots 3 times a day of Octreotide Acetate and then every 21 days of LAR. I’m in a battle like all of us are. But if we stop our fight then we can’t let out your own Rareness! Show the world you’re Zebra.
A nightmare, but doable, if that makes sense. I thought when I was younger this was normal, this is how everyone feels. This must be the way everyone feels with severe asthma, and this is just how it goes. I really never questioned it, until in 2004. Then I knew my life was different a different path now . Ever since then I began to become so much worse. This has taken over my life. I've worked my ass off to get to were I am today but yet now that college degree that I fought for, I don't need it. Nope .
Why? Because of Carcinoid Syndrome Cancer. I tried to become the best at Taekwondo but something stopped me. It has taken over everything. And I don't believe I have anything wrong with me. I sure don't act it and you wouldn't tell if u looked at me that I had a rare cancer. But I guess there's a reasons we are the "look good cancer." But with those things said all of that makes it all worse because I want what all my friends have. But I can't. Mine will never be the same. It eats at your soul in a way because it shows u what you can't have. And it does it's job. I do have a beautiful wife and an 11 month old baby boy that I'm still unsure how I was able to have my own family! But then... I know I'm worse the doctors told me so. And my wife and family and friends know. I know deep down in sure my lungs will take me. So that's where nightmare comes to play.
You work so hard, so hard not become that person that is sick all the time, or talks about it, ruins plans or just stays home. Or become the Patient who is now going to appointments over 5 times a week and is so tired to keep packing up the baby running to different sitters then rushing back to get him to take him home to get ready for another one. Or the Patient who know loves to do things can't as much. It's a nightmare watching the world go by and your in a loop that you live and work as hard as a healthy person but your not and people will and do look at you different. It makes my life as a horrible tease.
Simon was diagnosed with NET Cancer of the ileum in June 2017. Neuroendocrine tumours are a rare type of cancer that generates hormones which cause a range of unpleasant symptoms and can put a big strain on the heart. Surgery wasn't an option because Simon's tumour had spread to his liver, so he was referred to Guy’s Hospital in London UK for treatment under Professor Val Lewington.
His team decided to treat him with targeted radiotherapy using a radioactive medicine designed to recognise and attack tumour cells in the body. This treatment is known as PRRT. The treatment involves a course of four injections given every eight to twelve weeks.
Unfortunately, Simon also needed an operation to deal with heart problems caused by the tumour, which temporarily interrupted his cancer treatment. Once he'd recovered from the surgery he had his last treatment in September 2018.
In 2020 Simon started to have pain and underwent a series of tests and was found to have carcinoma bowel cancer and the NET worsening. Currently he is waiting for the bowel cancer to be dealt with and then will return to Guy’s for more PRRT.
SIMON says that along with having the support of his wife Selina he now has the support of an entire team of people who help him and other patients across the world. He is the founder of NET Cancer Foundation which brings together people committed to helping and supporting others.
“I have been on a difficult journey and now it is my turn to help others” he says. His passion is to make people aware of what NET Cancer is and to head up the team at NET Cancer Foundation to find a cure.
Simon goes on to say “Finding a cure is not easy because having nets is different for every individual therefore no one treatment fits all. That is why we need the support of researchers, scientists, doctors and patients all across the world”
We asked Simon if he will find a cure for NETS? His reply was very simple. You guessed correctly with his answer of “YES”
At the age of 20 I started getting crippling stomach aches. I won't go into the details, but my parents and I started looking for help. It started to disrupt my normal life. I couldn't eat out. If I ate my stomach hurt. If I didn't eat it hurt. It just hurt all the time.
She's got IBS, she's got a nervous stomach, she's got food allergies, if she lost some weight she'd feel better, and my favorite, it's all in her head. Take out her gallbladder, didn't help. Even suggested removing the first third of my stomach and a Whipple. I didn't let them do that because that's a little radical without confirmation of why. My husband held my hand through some of the darkest days of my life and for that, I can't even begin to thank and repay him.
In August 2012, after being admitted to the local hospital for the 164th time I was assigned this new GI. He reads my chart, which is a mile long, goes over my list of medications I've taken and what I've tried for the symptoms, again a long list, a food diary, and about how long this is going on.
He turns to me and says I'm pretty sure I know what's wrong with you. I laughed. Sure you do. Can I try something? Sure, because you'll try anything to feel better and you think he's just going to something they've already tried. Within 24 hours I'd felt more normal and more myself than I had since that very first attack.
He comes to me that very next night and says you look like you feel better. I do! You have cancer. My father, who is the Thelma to my Louise, and I traveled all around Florida and then we traveled to Iowa for confirmation. I remember openly weeping when the doctor said I've found them, referring to the tumors on the scan. They were real and it wasn't in my head. It was a relief.
No one should go through what I went through. I had to fly to Iowa for help. Luckily now I can go 3 miles away for the same scan. That took 5 years to happen. I still have to pre-pay $5,500+ out of pocket because no facility will allow you to have the scan without payment in full. The American Cancer Society funds allow for more training, more resources, more research. Asking me to pre-pay for the scan because it's a rare cancer.
Rare cancers like neuroendocrine carcinoma don't have their own month. All we have are the patients, doctors, researchers, and caregivers yelling at the top of their lungs that they won't be ignored. We are small and mighty but thus we persist.
I hope I was able to give you a little more incentive to donate your time or your money to the cause. If you made it this far, bravo! This was a little long winded!