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So, this the absolute beginning of this chapter of my life I believe and like it does with so many other neuroendricine cancer patients with a misdiagnosis. In October of 2011 Tracy and I had a dinner date with new friends of ours from the Brantford area, Jason and Erica. We were treated to a great evening with plenty of food, lots of cheese, a fondue dinner and of coarse a lot to drink. The night got a little out of control and well I ended up getting sick, think we've all been there.
I woke the next morning with a headache and a sore gut, nothing new after a night like that. However, as the day carried on the pain in my abdomen seemed to move to each side of me, to where your kidneys would be. I stubborn guy by nature I told Tracy that I was fine and I blamed just eating to much cheese the night before and in a day I'd be fine. The pain seemed to subside after a day and the work week started like all the ones before it, just the regular old schedule. By the time Friday rolled around I could feel the pain in my sides acting up again and Saturday when I woke it was hurting again. It was Thanksgiving weekend and by Sunday it hurt so bad that I felt sick and stayed home while Tracy and the boys went to her Mother"s for dinner. The pain was up and down the rest of that day, so when Monday rolled around I stubbornly conceded and we walked the three blocks to the Brantford Hospital to get checked out.
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After the usual wait, I was put on a stretcher in the hallway to wait for the Doctor. When he came I explain what was going on, I was given something for the pain and he was going to be back with the ultrasound machine. When he ran the wand over my belly, I noticed a puzzled look on his face, he told me that there was something there, but would need a better look. A CT scan was booked and I was told that it was possible I may be admitted overnight. I was given something more for the pain, inside I thought this will all be for nothing, I'm fine.
Surprisingly within an hour I was drinking the contrast juice, cranberry is my favourite, ( on a side note I will have plenty to say about what has become basically a constant in my life, the CT scan ). Then comes the IV so that they can also inject the contrast through you, anyone who has been through this knows whats next. When they let you know the injection is coming and it's going to feel warm, it basically means your gonna feel like you legit wet yourself, it sucks.
The scan showed the Doctor what he thought the ultrasound had revealed, I had a 2cm x 2cm growth of some kind buried deep in my abdomen, I was admitted for observation. I saw a couple Doctors while I was there a general surgeon, who would monitor me for a year, a Urologist and my family Doctor. The scan had also shown my kidneys and lymph nodes around them were inflamed and no one was really sure why? It could be this mass or a reaction to something I ate or another type of allergic reaction. I was given another CT scan on my 3rd day there that still showed that mass, but the inflammation was gone and I felt 100% better, so later that day I was discharged with a bunch of follow up tests and appointments. Over the next year I underwent a variety of scans, consultations and medical tests, I would meet with the general surgeon in charge of my charge to discuss my results about every four months for about a year. Among those tests and such were, CT scans MRI, endoscopy, colonoscopy and a cystoscopy. I will explain all those type of procedures in a future post, but if you never heard of a cystoscopy your in for a treat. Anyway, after the year or so of follow up and having no pain return and feeling 100% I was told that if anything were to act up I should go back to the hospital. As for the mass that was still there, it had not grown or changed in the year either and the doctor told me it could be some form of scarring tissue or just an irregular growth and just to listen to my body and feel free to get a hold of him if my health changed.
For 9 years I felt as good as anyone my age, say early to mid-forties, I ran and swam for fitness and ate what I believe was a fairly well balanced diet and lived a normal type life. Then in the late summer of 2019 my stomach started to hurt and get bloated off and on, well that's when the story takes a turn down a road I thought I would never go......I added this part to my blog just to show that this is how and why neuroendricine tumors are so often misdiagnosed and why more then 50% of us diagnosed are already in the stage IV category. They often disguise themselves and act like other types of diseases from IBS type symptoms, to others being diagnosed with depression because of constant pain, more on this to follow as well. Bringing awareness and therefore early detection to this rare condition is the only to help others from going
Oh my dear friend, I hope this turns out to be far less ominous than it is sounding.
I have at LEAST one CT per year to monitor my "Thoracic Aortic Aneurysm", and yes, I am intimately familiar with an cystoscope. Pray that you never have to endure a "Urodynamics Test", which for me at least, was THE most unpleasant and invasive thing.
I do so hope and pray that you are not stage IV anything @stevemed1973
Thank you friend for the kind word and insight of what you go though, I have a lot more to tell. I don't want to give to much of the story away, but yes I am a stage IV sadly. I have no quit
There are so many different kind of cancer, and some symphtoms can be similar to other things and getting the right diagnos can sometimes take time. My mom is a cancer survivor, she had breast cancer but fully recovered and 20 years passed and last year they saw some rest cancer from that time but unactive, so she gets meds to get rid of it.
She is doing well tho and no signs of activity.
You sure been through alot, and I am glad you finally got the right diagnose and they keep checking you.
I wish you fully recovery and Thank you for sharing your story 🙏
It will help alot of people and wake awarness.
Happy weekend 🌹
I happy your Mom is doing so well, it must have been caught early? Unfortunately mine was not and being such a rare kind it's not uncommon to be diagnosed at stage IV. There is a lot more to this story and hope you follow along. Cheers! I hope to help people understand what this is so early detection is key!
I Will absolutly keep follow along to see how your journey goes and to learn more about the story.
My Mothers cancer was caught early as we lost my aunt and after that my mom and her Sister got checked and that is how they noticed it.
So she was really Lucky and the operation took most of it and after treatmeant for 2 years she was all free.
Much love to You and yours ❤️
Wow what a journey.
Sobering and informational as well. Such a good idea to keep on top of these things otherwise it could flare when it is too late.
Great to have you here sharing your story with the globe.
Thank you my friend.
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STOPI haven't checked in on you for a while, and what a story I found today! Glad it finally got diagnosed properly. Modern medicine sometimes fails us, doesn't it?
Thank you, Doctors are trained to look for the obvious, not the rare. Awareness is key! I can't really blame anyone for what has happened to me. One foot in front of the other. Cheers!
Hello @stevemed1973. Wow...it hid itself for 10 years, just lying in there. How awful for you to go through that. It seems as though the doctors should have done more, or referred you for a second opinion.
Take care.
thank you @justclickindiva it not uncommon for this type of cancer to go undetected for years, hence its almost at stage IV when its finally caught. Hence my my blog awareness is key.
My niece has Stage IV metastatic breast. She never felt any symptoms. She just finished her first round of chemo. It's hard watching a young woman who just turned 40 go through this.
All my best, I'm only 48, so I can relate.
!LUV
@stevemed1973, you've been given LUV from @justclickindiva.
Check the LUV in your wallet. (1/10)