I wasn’t supposed to be here but I am.
I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010. Until I arrived at my 5th anniversary, I hadn’t thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as ‘Cancerversaries‘ but I now totally get why many patients and survivors do.
There are several types of ‘Cancerversary‘ that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way – and that’s perfectly understandable.
The 5-year milestone was significant, I suspect, because it’s a period very frequently used in cancer prognostic outcome statistics. When I was researching after my diagnosis, the 5-year figure for metastatic Neuroendocrine Tumours (NET) wasn’t that great, in fact, it looked less favourable than some cancers known for their aggressiveness. Then I gradually worked out that the prognostic figures for NETs were very dated (like many other things about NETs online) and did not consider improved diagnostic techniques and the introduction of a plethora of new treatments, in particular somatostatin analogues. However, in cases of metastatic NETs, I have since deduced that 10 years is frequently touted as a surveillance window, an estimate suggested to me by my surgeon.
I quickly came to the conclusion that my particular cancer based on my own diagnosis is incurable but treatable, but I can no longer call my diagnosis terminal based on any definition of the latter term given that I’m still here.
Consequently, I no longer pay any attention to prognostic statistics – I’m more influenced by the substantial number of long-term survivors I see out there.
Despite some issues simmering, I’m still here and I intend to be here next year ready for my next three major milestones – Chris’s 70th birthday in December this year, my Golden Wedding Anniversary in March 2025 and my 70th Birthday in October 2025. A trio I would hate to miss!
Check out and join in my Facebook annual cancerversary posts
Other than this original post, I didnt really do much on Facebook until the 7th year. In those days, I didn’t have a big Facebook outlet so I guess I was focused on the blog site as a way of telling these stories.
However, see Facebook posts from year 7 onwards:
Check out the fantastic response to my 7th year ‘cancerversary’ post. Click here to be inspired.
Check out the fantastic response to my 8th year ‘cancerversary post’. Click here to be inspired.
Check out the fantastic response to my 9th year ‘cancerversary post’. Click here to be inspired.
Check out my “10th cancerversary I’m still here” post. Click here.
Join in the “11th cancerversary I’m till here” post. Click here.
The 12 year point – Click here
The 13 year point – Click here
The 14 year point – Click here
The 15 year point – Click here
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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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So glad you’re still here—and inspiring and helping this community!
Appreciate you, Ronny. ONGOING HEALTH to you!
I celebrated my 5th PNET cancerversery in June. A good time to reflect on my situation with gratitude for the health professionals (researchers, doctors, nurses, drug manufacturers, donors, RonnyAllan, and more). Five years ago our family took our planned fishing trip to Manitoba. Father’s Day. That year I took some additional “tackle” with me in the form of a newly implanted chemo port. It was a tough trip emotionally but I wasn’t going to cancel what I assumed was my last trip to the Canadian wilderness. My outlook was short and grim as I had not yet received the PNET diagnosis from the liver mets biopsy.
I’ve seen and done a lot in five years. Surgery on the pancreas and liver mets, both kid’s graduating high school and enrolled in university, and too many more to mention. This Father’s Day I made my first trip to Manitoba since 2019 with my son. I’ll go back.
Regardless of frequency, to “celebrate” a NET diagnosis always includes thoughts and prayers for those patience and families with different cancer diagnoses and outcomes. We all share a path, for as long as we can.
Not Curable, Stable, and Grateful
🤜🙏
Keith
Very encouraging and lighthearted. Need that.thanks
Hello Ronny,
I came across this link today.
Thought it would be useful to share:-
https://www.recode.net/2017/1/12/14230982/siri-creator-dag-kittlaus-exam-pancreatic-tumor-silicon-valley
James
Please reply to mrjamesrees@gmail.com
>
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Good spot James. I already picked that up and he’s featured in here
https://ronnyallan.com/2014/11/03/the-human-anatomy-of-neuroendocrine-cancer/amp/?__twitter_impression=true
I’m still here after being diagnosed with metastatic neuro endocrine tumour in the liver in January 2008. I had what they said was a cholangeo carcinoma in the bile duct diagnosed and operated on in 1991, which they now think could have been the primary of my present NET.
I have just had my latest scan results and am of stable condition again. It is so humbling having the care and treatment of my Dr Evans at Weston Park hospital in Sheffield and all the lovely nurses, I’m so grateful to them all.
Wow, I need to read up on that, always thought that was an adenocarcinoma. That area is really packed with organs ! Happy to hear you’re stable!
I am at 1 year and 3 months. No surgery (breast cancer presenting itself as neuroendrocrine with 15 know tumors, Stage 4). Thank you for your information, your blog, your website links. It is hard to stay calm and stay focused on living. It’s rearing its ugly head right now but I feel confident in my “team”.
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Best wishes Beverly, it’s good to have confidence in your team.
Well done Ronnie, you are an inspiration. Sadly, my, husband survived only 17 months from diagnosis.He was diagnosed with poorly differentiated metastatic neuroendocrine cancer of unknown origin. He was offered only chemotherapy and radiotherapy. It worked initially but the cancer recurred and the second time he was not able to take the chemotherapy. It was so difficult to see the one you love dying and not being able to help. Hopefully in the future this can be cured too. We tried everywhere and everyone and short of one trial in the U.S. there was no treatment. today would have been our 37th wedding anniversary. We did have 35 good years and i am thankful for that.
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So sorry Liz. Many are lucky to have well differentiated tumors. More work is required for poorly differentiated and immunotherapy for NET seems to be focussed on high grade.
Good morning,
I had surgery in 2015 Without any simptoms except little anemia for 1 year.
Now I feel little fluscing and fatigue.
.
But this is not the topic:.
I am 76 year old an I had prostatectomy 8 years ago.
Otherwise I was generally healthy
The strange thing was that from my 30th i had sometime fatigue for 2 0 3 weeks and no doctor found a reason.
I had also feeling hot on my face for a few weeks without temperature or flu simtomps for 2 o 3 weeks..
I have my nose a little be red from a few years
Now I am thinking!!! could be 3 early simptom of Net?
Thank you for your Blog
Ludovico
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thanks for your comment. It’s possible. I hope you’re doing OK now!
Thanks again Ronny and like christine I was diagnosed quite recently and my emotions were shot but your blog helps me every single day. My Cardiff consultant also speaks very highly of you and said he enjoys working with you
When I was diagnosed last year I was pretty scared. My initial Web searches all seemed to end up on a Steve Jobs story.. and we all know how that worked out. Moreover, it turns out my mom died from NET. I thought it was just “colon cancer”. My diagnosis was thanks to a lot of luck and some good doctors.. my main Tumour is inoperable but I’m on somatuline autogel and lutetium 177 treatments.. so I intend to be around for a good long time yet. I’m really grateful for your pages.
Congrats to you Ronny!! You have four great suggestions in response to Jacquie’s reply but I think to add to that I’m going to assume you have a very bright outlook on life…..given what I read in your blog. I know it’s not easy to keep that up but somehow you do and you have given many, including me that “keep on keeping on” attitude. I’ll celebrate one year since surgery this August 5th with a green tea latte and a long walk in the woods. I’m so grateful for what you do Ronny! Be well.
Walking will keep you alive and fit 😀 Plain old English Breakfast tea for me (hot with milk).
Jacquie reply?
sorry, her comment
So happy for you Ronny, our daughter was diagnosed with Goblet cell carcinoid a year ago, I find your blog very uplifting
Thank you Jane, best wishes for your daughter!
[…] Ethanol (alcohol, liquor) Many NET patients have difficulty tolerating wine, beer and spirits (hard liquor). I was never a big drinker so for me it was easy to go almost teetotal. I do have the occasional beer but very infrequently and normally on holiday – I personally don’t get any issues with the odd beer but again this is trial and error. I really enjoyed my beer last week when I celebrated my 5 Year ‘Cancerversary’. […]
Thanks for inspiration. I am struggling now that it has been 4years since my diagnois. I am having a lot of fatigue and working as a teacher is getting even harder. I am positive, but just weary. Any advice?
Thanks
Jacquie
that’s a tough one for me to answer. I’m not a doctor and I don’t know your full history but here is what works for me:
1. Ensure you’re getting sufficient vitamins – bearing in mind NET patients are at risk for quite a few which can contrabute to fatigue. I take a good quality multi-vitamin (over 50) a Vit B complex, Vit D3 Supp, Omega 3 and I also take probiotics to help with overall gut health. Check out my Nutrition blogs.
2. 8 Hours sleep a night
3. Remove as much stress from your life as possible – difficult one. I was lucky in that I was able to retire early. Check out my blog “Sorry, I’m not in service”
4. Exercise – even a short walk will help.
Ronny
So many positive messages here. Great to see. Stay strong. X
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
My original diagnosis was 15 years ago with the metastatic spread in 2008. So, for everyone out there that has just been diagnosed stay strong. There are better diagnostics, treatment and awareness than there were in 2000 so there is a lot of reasons to be optimistic. Listen to your body and be an active member of your healthcare team.
great advice!
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
Celebrating five years since the surgery this September. Feel like there’s a sword over my head, but it doesn’t frighten me as much as it once did. We live a good life and just keep on trying to live it to the fullest!
great attitude!
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
The first time I had a CT scan I was diagnosed with lymphoma, but there was a mass in my gut. They told me it was a pack of lymph nodes. Five years later, 2011, I had the mass biopsied and it was metastatic neuroendocrine carcinoma. It took the docs a couple of months to find the original source, gastric carcinoid, and my stomach was removed along with the mass and lymph nodes. I’m on surveillance and will be for the rest of my life. The lymphoma has been treated off and on since 2005. Welcome to my world.
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
I was diagnosed in 2007 and Iam stable. Praise God. Through the yrs I heard many things from Drs. ” There’s
Nothing we can do , to well you might have 3-4 yrs””.
Great stuff Pam – listen to your body – sometimes it knows more than the doctors 🙂
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
Good to hear your positive story!!! All the best and hears to another five years!!
Dougie
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
God bless you Ronny ,and lets enjoy the journey the best we can. Galo
thanks! Check out this page if you’re not there yet https://www.facebook.com/NETCancerBlog
Diagnosed 2009 and still going strong….God bless Dr. Shah (Birmingham QE) and Octreotide 🙂
Congrats! 5 yrs is great! Here’s to many more! ~ Ed
Well said Ronny!
It’s good news! My 5 year cancerversary is next month – not sure, just like you, whether is it a celebratory affair. Life is short and you never know when death will come so enjoy it while you can!
8 years and counting in my case Ronny. Keep Rollin’ 🙂
Hi Ronny
Gad to hear it mate. Jim Borley
Well done Ronny, cheers😃🍷
Hi Ed, thank you for my support, and once I get my blog sorted I will include your link to if that’s ok. Sounds like you have had quite a journey, and I greatly admire your positive attitude and the need to learn more.
I have everything crossed for you, Kath:-)