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I’m still here

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Seven years ago. I was diagnosed with metastatic Neuroendocrine Cancer – 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 various 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 most likely handle it their own way – and that’s perfectly understandable.

The 5 year milestone was significant, mainly I suspect, because it’s a time period very frequently used in prognostic outcome statistics. When I was researching after my diagnosis, the 5 year figure for metastatic Neuroendocrine Cancer wasn’t that great, in fact it looked less favourable than more aggressive cancers. Then I gradually worked out that the prognostic figures for Neuroendocrine Cancer were dated (like many other things) and did not take into account improved diagnostic techniques and the introduction of a plethora of new treatments, in particular somatostatin analogues. Consequently, I no longer pay any attention to prognostic statistics – I’m actually more influenced by the large number of long-term survivors I see out there.

My cancer is treatable but not curable but I will never call it terminal.  I’m still here and I intend to be here next year, and for many more years after that!

thanks for reading

Ronny

 

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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44 Comments

  1. Val Rogers says:

    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.

    Like

  2. Beverly speiss says:

    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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  3. Liz Dwan says:

    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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    • Ronny Allan says:

      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.

      Like

  4. uziel ludovico Meilmann says:

    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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  5. Gaynor Miles says:

    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

    Liked by 1 person

  6. Christine says:

    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.

    Liked by 1 person

  7. jeanne says:

    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.

    Liked by 1 person

  8. Jane Sanders says:

    So happy for you Ronny, our daughter was diagnosed with Goblet cell carcinoid a year ago, I find your blog very uplifting

    Liked by 1 person

  9. […] 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’. […]

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  10. Jacquie Cupich says:

    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

    Liked by 1 person

    • ronnyallan says:

      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

      Like

  11. James Rees says:

    So many positive messages here. Great to see. Stay strong. X

    Liked by 1 person

  12. Yvonne Lenfesty says:

    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.

    Liked by 1 person

  13. Heather says:

    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!

    Liked by 1 person

  14. sheila mulcahy says:

    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.

    Liked by 1 person

  15. Pam Cummings says:

    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””.

    Like

  16. Dougie says:

    Good to hear your positive story!!! All the best and hears to another five years!!
    Dougie

    Like

  17. Guillermo Salamanca says:

    God bless you Ronny ,and lets enjoy the journey the best we can. Galo

    Liked by 1 person

  18. Diagnosed 2009 and still going strong….God bless Dr. Shah (Birmingham QE) and Octreotide 🙂

    Liked by 1 person

  19. Ed says:

    Congrats! 5 yrs is great! Here’s to many more! ~ Ed

    Liked by 2 people

  20. zwanny63 says:

    Well said Ronny!

    Liked by 1 person

  21. Beth says:

    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!

    Liked by 2 people

  22. Paul Cross says:

    8 years and counting in my case Ronny. Keep Rollin’ 🙂

    Liked by 1 person

  23. Jim Borley says:

    Hi Ronny

    Gad to hear it mate. Jim Borley

    Liked by 1 person

  24. Well done Ronny, cheers😃🍷

    Liked by 2 people

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