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Five Years Post-Diagnosis, What Does It Mean?

As I mentioned in my previous post, my five-year cancer diagnosis date has come and now gone. I have passed the long-awaited for and highly anticipated five-year mark. It feels a little bit like when I completed primary cancer treatment. It sort of feels like, now what? I’ve been struggling a little bit as to what I should write about this particular juncture. I guess I’ve been putting a little pressure on myself to come up with something profound to share with you, my dear readers. I mean this is supposed to be a big deal. And it is. But then again, it isn’t. It’s just another passage of time. But yet it’s more.

I was feeling that by this point, after five years, surely I should have something at least somewhat enlightening to share. There should be a special five-year-gem-like bit of wisdom to pass along shouldn’t there?

After all, after cancer you’re supposed to be a better, or at least a more enlightened person all the way around aren’t you?

After five years then, I should be pretty darn enlightened, right?

Guess not.

Turns out, I have nothing. Well, nothing much anyway.

In all honesty, the time marker that was of most significance to me, psychologically speaking, was when I reached 3.75 years beyond my diagnosis date. You see that’s how much time passed after my mother’s cancer diagnosis before her cancer recurred. In my mind, that was the marker I wanted to race right past. And I did. I try hard to not compare my cancer to my mother’s cancer and most of the time I’m quite successful. I know our situations and our bodies are/were entirely different, but cancer does play those nasty little mind games from time to time.

So what does reaching the five year mark really mean?

I have no idea.

It’s good of course. No, it’s fantastic. I’m still here. I’m still NED (no evidence of disease). And I am grateful beyond words.

I also know there are no guarantees, not for any of us. There never were.

I ask my oncologist about recurrence rates for someone like me at most visits and each time I do, he patiently gets out his little pad of paper and his pen and proceeds to draw the same diagram he always draws to illustrate his point, that point being that the greatest risk for recurrence for me was in the first two to three years and then it leveled off a bit and then by year five it levels off more. Maybe you’ve seen the same diagram. After five years that ominous line representing recurrence flattens out quite a bit. Again, this is very good.

However that dang line of recurrence never disappears from the diagram. Not ever. It keeps hovering right on over to the edge of that piece of paper.

Cancer does the same; it will hover over me for the rest of my life.

This is a daunting fact, but surprisingly, it’s not one I think about very often. I just don’t worry much about what might or could happen recurrence-wise. In fact, it struck me one day when reading someone else’s blog post that I haven’t yet blogged about fear of recurrence. I need to write that post sometime.

But for today, I guess I don’t have much more to say.

Five years post-diagnosis feels pretty darn great.

And I am grateful.

Maybe both of these statements are pretty profound after all.

How long has it been since your, or your loved one’s, diagnosis?

How do you feel about milestone dates?

If applicable, do you worry much about recurrence?

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45 thoughts to “Five Years Post-Diagnosis, What Does It Mean?”

  1. Nancy, congrats again on your 5 years!

    For me it feels different, as time goes by, I worry more. I think it’s a mix of things: the fact that I was dx at a very young age, with no children. The other fact is that I’ve heard too many stories. I don’t mean to sound discouraging. I also believe being NED is a big deal, especially after 5 years.

    I am speaking for myself, someone dx at 32. I hear stats about young patients and sometimes I wonder how I would turn out. Also, the fact that I was dx so young means I haven’t accomplished a lot in life. I don’t have a family of my own. This means, cancer may be on my mind more often than it is on yours because there are so many decisions I need to make and they depend on my health (like having children, for example).

    I don’t count the years I’ve been dancing with NED because if I do, it would be a reminder that: 1) I still need to think of building a family, 2) I am getting older and older, therefore, less possible to have children, 3) My cancer was estrogen/progesterone + and I often think “when” will this come back, IF. I stop celebrating years, and even my birthdays annoy me a little. Again, maybe it has to do with the fact that I am running out of time to accomplish certain things and don’t want to be reminded. Treatment is more important than everything else I was “supposed” to be doing.

    People might say I sound negative, but I am not. I am realistic and know the consequences I may be facing with every decision I make. There is a lot to think about because I was only 32 when I got cancer. I was rushed to the end of the “path” too quickly.

    And yes, I worry about “recurrence” more often than I want to. But I keep reminding myself that we are all here temporarily. One of these days, I will share an experience I had about almost almost losing my life on an elevator (this happened last summer). I laughed so hard while I was stuck in there! Because here I am worrying about dying from cancer when an elevator can easily take me. 🙂

    I have never seen that “diagram” you speak of.

    Wishing you many more years ahead, dancing with NED.

    1. Rebecca, I don’t think you sound negative at all. You are being realistic and all your thoughts and worries are totally understandable. I’m sorry you have had to deal with so much and that your diagnosis came at such a young age, although of course, there is no good age to get cancer. And don’t get me wrong, I think about cancer a lot, probably too much, but I can’t help it. It’s part of my life now and has impacted me in so many ways. I don’t think about recurrence terribly often though. Of course, I do think about it, just not as often as one might expect. I figure why worry too much about it now? What good does that do? Thank you for sharing. You’re always so open and that’s lovely of you. Looking forward to your elevator story. Thank you for the good wishes too.

  2. I’m at the three year marker from when I completed radiation…3.75 from when I was diagnosed. Your post hit home with the “I’ve got nothing”, because I try to write profound things about being part of the Pink Ribbon Club now and at this point, I’ve got nothing.

    I look forward to year 5, only to be done with having to take the aromatase inhibitors. There will be a party where I throw away all of my empty pill bottles!

    1. If you are lucky. My docs said the new thinking is now 10 years on the AIs. or at least 5 + 5 – 5 years on AI and 5 on Tamox, maybe.

    2. Kim, I’m glad the post resonated with you. What is your blog link? I hear you about the AIs and that party. My oncologist is suggesting 10 years for me, so my party might have to wait a while. Thank you for reading and sharing.

        1. Kim, My oncologist is recommending an extension, but I can’t think about that yet. Have to finish five years on first. Thanks for sharing your link.

  3. Five years deserves a big high 5!!! You are correct, Nancy. I can only assume that once most people are diagnosed that “little seed” of cancer and recurrence is always in the back of your mind.

    I, unfortunately, have been diagnosed twice. Once in 2002 and again last year in April of 2014. I have been through 2 lumpectomies, chemo, radiation and Tamoxifen the first diagnosis. Last year I had a double mastectomy, clear margins with no lymph node involvement, a Ki67 score that indicated I didn’t need chemo, a marginal/gray area OncoDX score that said I did need chemo ( I opted out), and finally on to reconstruction in December of 2014 and the completion of reconstruction just 1 month ago tomorrow. This is not a “badge of honor” list. This is just my story.

    Recurrence is always on a cancer patients mind. It was for me but I was blind-sided the second time. I was angry as hell. The funny thing about cancer is that you can be feeling absolutely great, strong, healthy then, BAM, someone says you have cancer, AGAIN. Now I sometimes feel as though I was never cancer free but in remission for 12 years.

    All that being said, this is what I can tell you today. I feel wonderful and strong again. I have my sense of femininity back, I think with more conviction and clarity than I ever have in my 59 years of life. I am blessed with family and friends that have listened to me complain, be angry, cry and rant about having cancer again and yet were there to shore me up when I needed physical as well as emotional support. My faith, although more spiritual than religious, has seen me through some of my darkest days. And because of my second diagnosis, I am writing on your always inspiring blog today and have met and engaged with other survivors in this community that have shared and cared and always make me feel welcome to engage. Thank you!

    Celebrate your five years. Dance, laugh, enjoy nature, love and breath in the air that you so deserve on this, you special five year anniversary!!

    Cheers!

  4. I always say at least it’s age appropriate stuff for me. I really feel for the young women and men who have the risk of cancer recurrence hovering over them. No guarantees though for any of us regarding our expiration dates. Just glad to be above ground living in the now. Cent’anni dear Nancy! 100 years to you! Thank you for another thought-provoking piece!

    1. Nicki, Actually, it’s not age appropriate for you and me either, but yes, I feel for the young women and men grappling with all that a cancer diagnosis throws their way too. I like how you put that – glad to be above ground. So true! Thank you for reading, for the good wishes, for all your support and most of all, thank you for your friendship.

  5. Nancy congrats on year 5. I hope you can enjoy the twinkle of happiness while looking over your shoulder. I’m at year 3 but I try not to pay too much attention to it and sometimes find myself wondering about the worst case scenario. Then I remember to just be here now. May you enjoy all of your tomorrows!! Thank you for your thoughtful posts.

  6. Could so relate to all of this! I am 6 years post diagnosis, and 5 1/2 post the end of chemo (which is where my oncologist counts from, apparently). Even though I know that the cancer could recur at any time, I was still looking forward to the 5 year mark to at least be free of meds, but my doc says the new thinking is now 10 years! So, on we go. And nope, nothing pithy or significant to say, really. Just have to keep moving on, one day at a time and trying to enjoy life as it comes.

    1. Kim, Interesting how people start ‘counting’ from different dates. And yes, one day at a time regarding all things. Trite, but so true. Thank you for reading and commenting too.

  7. Congratulations on reaching your 5 year mark. Two weeks ago I reached my 5 year mark. It was just another day, I didn’t even take my husband with me. I don’t really think about recurrence. If it happens, it happens, not much to change that fact if it does. Cancer dates only matter to me, because I’m the only one who remembers them.

  8. Congratulations Nancy – I’m right behind you in July – or this month of May. I had two operations and can never decide which month is the actual. Still, a big woo-hoo – adjust the fears that will never leave your mind and move on! May you have many more years of NED.

    1. Mae, Guess you are right behind me. Woo-hoo to you as well. I don’t feel fearful, at least not that often and I have moved on, but in some ways, I never will. If that makes sense. Thanks for reading and for the woo-hoo!

  9. I appreciate your post Nancy and those who have previously responded. What I find profound and insightful is the here and now. We are alive to ponder such questions as “what does it feel like to be 5 years out?” I am coming up on 7 years since diagnosis and have been on Tamoxifen for over 6 years. My oncologist would like me on a medication for 10 years. As long as I am pre-menopausal I will stay on Tamoxifen, otherwise I will switch to an AI. Part of me would like to be done with meds, but part of me likes the sense of security being on a medication contributes to. As you say, there are no guarantees, but the fear of the “r” word of recurrence and the even scarier “m” word of metastasis isn’t paralyzing. It does lurk, but gratitude keeps that fear at bay. Cancer impacted me deeply, but I also feel deeply grateful–to be able-bodied, alive, and living life fully. Thanks!

    1. Lisa, I think most of us are filled with gratitude for being alive and for being at least somewhat able-bodied. It’s human nature to have moments of doubt and fear, but as you alluded to, it’s about finding balance so one can enjoy the here and now. And your words always provide exactly that, balance. Thank you.

  10. Congrats! But yeah, I reach my 5 years later this year and not sure my fear will level off accordingly. BUT, I will LOVE to only see the oncologist once a year rather than twice. And then I will look forward to breaking off with him 5 years after that!

  11. Congrats on the 5 year mark. Yeah, it’s huge, but at the same time not so much. Even as I approach 6 years out this summer, I wish “the fear” of recurrence didn’t occupy as much of my thoughts as it does, but it just does. Like you, I’m so grateful to be living & NED, but it’s never far from my thoughts. Guess I’ve known too many who thought they were done. Ah well… Yes, seeing the onc only once is awesome. I just am so enjoying my first spring without the cancer-doc cloud hanging over. Yay! Thanks for this great post!

    1. Kimberly, Yes, these milestones are a big deal and then again, they’re not. We all know better… So glad you are enjoying spring with no cancer-doc appointments looming. Nice. Thank you for reading and sharing.

  12. I’m coming up on my 5-year mark so I was glad to read your post. I feel so much like you. I feel it means nothing, yet it means something, but it doesn’t mean we’re ever totally out of the woods.

  13. 5 years should feel pretty great! Woohoo! Of course I wouldn’t expect the fear to quite ever go away, but it is am important milestone.

  14. Hi Nancy. Thanks for sharing your mixed feelings. I know that worrying about recurrence is a waste of thinking time, so I’m trying to focus on other more positive things that make me happy. But on the other hand I don’t want to forget about the cancer because I am worried about slipping back into bad lifestyle habits. I know there are things I can do that can boost my immunity and might help prevent a recurrence: stay healthy, exercise, eat well, sleep enough, don’t get stressed or frustrated … it’s not a magic recipe I know but if my cancer does some back at least I won’t be beating myself up for not trying.

    1. That is a great plan for any individual. Do what you can to stay healthy. I suppose you could say that is one positive outcome of not forgetting you had cancer. It has made you aware and given you that feeling of doing your best to boost your immunity and do what you can to prevent recurrence. You’re correct, it’s not a magic recipe but I like how you have affirmed your “best effort” attitude.

    2. Rethink Street, It’s about doing our best and finding some kind of balance I guess. One has to acknowledge the reality of what is possible, but not waste time dwelling on all the what ifs. Thank you for sharing what you are trying to focus on. Pretty good advice I’d say.

  15. I am now in my 7th year, the first few were the most terrifying after surgery chemo etc. To be honest I had no idea what I was the most frightened of, The idea of Cancer, fearful it would come back or just the general frar of cancer, it is daunting being diagnosed.. The closer I came to my 5 year mark the less I seemed to care that unrelenting fear was disappearing,I made the decision not to take Tamoxifen or any other drug, I was quite OK with that decision..I had already experienced Side Effects from using the drugs at the start.. so I pass….Even against all the odds presented to me by my Oncologist that i’d be lucky to make it to 4 years if I refused well here we are folks we are heading towards “Lucky number *7* so far so good. I’m still scared about cancer but not the unknown fear I had earlier experienced

    Love All…..x

    1. Alli, I am so glad you are still here and proved your oncologist wrong too! It’s interesting that you are less fearful now, which is of course, a good thing. Thank you for commenting. It was wonderful to hear from you.

  16. Hi Nancy,

    Your statements are indeed profound. I know that so many people expect to have that nugget of wisdom at the 5-year-mark. For me, it’s been 14 years since I heard those words, and from my perspective, each year forward gets harder. It seems as time goes on, the less I understand about life, and maybe that’s the way it should be.

    My perspectives on cancer and survival have evolved over the years. I know that after treatment was over, I felt I had conquered the disease. Then the fear and reality sunk in. At my 5-year mark, my friend Faun died, a reminder that things might not go my way. I also got a scare a few months later that led to my prophylactic bilateral mastectomy with reconstruction.

    Then my PTSD got worse. But, like you, I am grateful to be alive.

    Congratulations, Nancy, on hitting the 5-year mark. It is significant, I believe. May NED be with you forever. xoxo

    1. Beth, I think perspectives on everything evolve as we grow older. It makes me sad to think that each year forward for you gets harder, but then again, it makes sense too. I didn’t realize that your dear friend Faun died at your five-year mark. Bottom line is we are grateful to be alive and each year, each day is significant. Thank you for sharing and for the congrats too.

  17. Congrats on the 5, Nancy. They’re all good – no, they’re all great. But I didn’t celebrate any of the milestones until I hit 10. That one seemed worthy of attention. I think it’s hard for any of us who really pay attention to the details to get too excited about 5 years. We know that our risk of recurrence goes down, but we also know it never goes away. Hard to celebrate too much for something that’s never done. But even so, congrats, well done, enjoy!

    Julie

    1. Julie, It’s so good to hear from you! Every year we’re still here is very, very good indeed. It’s interesting that you didn’t ‘celebrate’ until number ten. That seems like a long way off for me yet. Glad you are there though, yay for you! Thank you for reading and thank you for the good wishes.

  18. Congratulations!

    Our Mom was recently told if she completes treatment she has to take Tamoxifen for 10 years they no longer prescribe it for 5 years anymore. This 5 year mark doesn’t make her feel better. She just wants to live as long as God allows and prayerfully she will be here to love and play with her great-grandchildren.

  19. Hi,
    I am wondering what exactly it was that got you through five whole years. Was it the support from friends and family or something else..? Do you have any advice for dealing with a loved one who has been diagnosed with cancer?
    Also, what do you feel has changed most within you after 5 whole years since the diagnosis?

    1. Kelsey, Well, blogging has played a huge part in helping me get through the last five years. And of course, the support of my family and friends has been the most important. I always encourage the newly diagnosed to journal because writing is a fantastic outlet. I also encourage them to find support somewhere, online or in person. Doing so is vital. As to your last question, everything has changed… but then again, it hasn’t. Hard to describe. Thank you for reading and posing some questions.

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