Anniversary and ILC recurrence: help
Dear all,
I am coming up on my 5 year anniversary (see date in sig line below) and instead of being happy, I'm becoming anxious and depressed. This happens every year temporarily but this year in particular....well, it's not good. Maybe I have too much knowledge, but I don't feel better the further away I move from initial dx. Instead, I feel more scared.
Because I know ILC has a tendency to recur later rather than earlier, I feel like I'm moving farther away from safety the more years I move away from dx. I feel like I'm moving toward something awful instead.
I posted my feelings here this year even though I know that this board isn't as active as others. I know you ILC'rs will understand what I've written in this post. When non-bc people ask me how long I've gone--and ask if it's been five years, like that's some magic number, I get scared all over again, because I know and you know that we are really never out of danger of recurrence. Five years is meaningless to me, it doesn't guarantee safety, or relief, or anything like that at all.
Thanks for listening.
Claire in AZ
Comments
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Claire, I can't speak to ILC but understand your jumpiness around the dx anniversary, and especially as you approach the 'magic' five-year mark. I suspect it feels like something of a jinx, perhaps?
At any rate, just wanted to repay some of the support you've shared so generously over the years. Hang in there. -
I am at 3 years and know exactly how you feel. People assume that the further out you are, the safer you are from recurrence. With ILC I start to worry that I am getting closer to a delayed recurrence.
Not a lot we can do. Just keep on leading a healthy life and hope it never comes back.
There are a lot of advances being made. Maybe if it does come back at a later date, there will be more choices of treatment available.
Look after yourself xx
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Wishing you all comfort as anxiety starts to rise
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SuC, thanks for getting my point. Non-bc people ask "are you past 5 years" like it is some magic end to all this. They just don't get that recurrence can come at any time for any of us, regardless of initial dx. I read somewhere on these boards that simply because we all had a dx of bc we are all high risk and always have to be vigilant the rest of our lives. Where did that "5 year myth" come from anyway? Another kind of cancer other than bc?
I think I'm completely weary of being vigilant right now.
Hopeful, thanks for the atta-girl. I do try, and sometimes wonder if my words here make any diff at all.
Thanks, Kcabrera, the anxiety goes up and down. Sometimes I just get mad at it and tell it to get the h*ll out for a while (with mixed results).
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Claire, you definitely DO make a difference. I always appreciate hearing what you have to say.
Re: the whole 5-year thing - a) I think it used to be seen as a real victory if anyone with any cancer dx survived 5 years after dx - and that became a place holder for "cured." b) Maybe 'awareness' needs to include educating the public that 5 years does not signify cure - that, for many of us it has little to no meaning? Awareness of recurrence as well as detection should be an important part of public outreach, in my mind.
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My husband had leukemia when he was 17 and we were told that after 5 years he is considered cured. Maybe that is where people get it from. If only that were the case for all cancers. CANCER SUCKS!
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I, too, am filled with despair, as I have just started this journey, and I want to cancel the trip.
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Hopeful8201, I like your last post above. I think I might post some status on my FB page like that--five years is meaningless to bc survivors--although I hesitate to put something that personal on social media. I'm funny that way.
Licata, we all know how you feel. You feel like you're wallowing in fear right now, but eventually, it lessens, although probably never goes away completely. Most of us are able to live good lives in spite of occasional fear and despair. Anniversaries and oncology check ups are the worst for me.
Luckily you can drop in here to one of these discussion threads and always find support, which has been HUGE in my recovery.
Hugs
Claire inAZ
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Hi Claire,
I know that we all need to be vigilant, but my take is that it's even more important that we live each moment to the fullest and savor our time on earth. For me, it's even more about being in my mid 60s and realizing that I won't be hiking/cycling/skiing/running/camping forever. It was particularly sweet this summer to have done ALL the local bicycle club (Cascade) cycling events with the result that I am fine and extremely fit, but my bicycle is in the shop with a broken spoke!
My recommendation would be a spot of FUN. You can always be vigilant post celebration. My personal recommendation would be chocolates and champagne, but you may have other ideas.
I recently acquired some silk underwear which certainly makes each day I wear it a lot brighter.
I know that I am also a "high risk" patient, and the reason for exercise and aspirin at this point. But I also make myself gourmet dinners (hence a REAL need to exercise) and do fun things. I feel beyond fortunate to have been granted this extra time on earth.
Speaking of fun, I wish you were here to go with me to Burlesco Divino - Wine in Rome, a survey of revelry in Ancient and 60s Rome. It's treat fun, and gorgeous costumes. Not to mention bodies of the dancers/burlesque performers. Just a hoot.
And no, you don't ever look at a glass of Prosecco in quite the same way after seeing Lily Verlaine's performance. - Claire
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Claire in AZ,
I found a bright spot today, and I hope you will see the same glimmer.
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Claire in AZ - I'm that way about social media, too. I don't even hint about this on FB, for example. I'm glad to know I'm not the only outlier in that regard. Maybe you could just post something on one of the awareness/breast cancer month site and phrase it in a less personal way - along the lines of "Did you know...." or even "I have a friend with bc and she told me..."
I think Claire in SEA offers good advice about finding something fun. That really does help, even if it's just a film or a day away from daily life, whether a spa day or a day-trip. Having something to look forward to really does help but it's easy to forget to seek out pleasure and treat it with the same sense of duty that we do our work. (I'm not very good at this, at all.)
Licata, I'm glad you found a bright spot. Do come here when you need a boost - I think there are always days when we just want to run away from our changed reality. Deal with it one hour at a time - and keep a list of enjoyable activities/indulgences handy for those times you want a lift and can't think of anything.
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Claire, I am 6 years post end of treatment, I feel exactly the same. Not " cured" or survivor, for me it's remission and NED. It's my personal take and I understand that others may feel differently. I have acquaintances who recurred stage 4 at 7, 10 and 12 years😢
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The five years emphasis comes from all the literature; that's where the intense follow-up ends and and the amount of information gathered and studies published after that essentially falls off the cliff.
It is true that many people who make it out five years are deemed cured from certain kinds of cancers, including trip neg BC. Consensus is that if you make it out five years from that, it isn't coming back; i.e., it's one of the aggressive types and if it doesn't recur/metastasize during the first five years from dx, you are going to be OK. While that isn't the case in every person's situation, it does hold up, statistically.
I will stop now except to wish everyone reduced anxiety, if possible. Otherwise I might start ranting about the patriarchy in medicine and my disgust at the dearth of effective diagnostic tools and research about ILC.
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Dear all, thank you. I am not hyper-dwelling on this, but anniversaries hit many of us in odd ways...not always celebratory, either. I DO a lot of fun things, but that doesn't take away the sometimes-dark umbrella that we all live under.
I appreciate the statement above that in reality , all of us are "high risk" simply because of our initial dx. What rankles me more is the question that I get from non-bc'rs who, when they find out I had it, ask "how far out are you", as though there's some kind of target to shoot for or magic bullet to wait for. Truth is we are simply shooting for a life that allows us to die from something else at a very old age, right?
Unfortunately, other Claire, my wine days are mostly over. ILC is particularly sensitive to alcohol, less so than other sub-types, and anyone dx with ILC needs to avoid it like the plague.
However, I will say that the knowledge that ILC can recur much later and sometimes we feel like we are moving toward some cloudy, nebulous threat--it's true for many of us--doesn't take into account this: the AIs we are on, the bikram yoga and regular hiking we do, the clean eating that we practice, the clean environment (no pollution) we live in, the clean water we drink, the low-normal BMI we have, the supplements (Vit D and aspirin etc.) that we take, the weight-lifting and meditation we practice, the alcohol we've way cut down on or eliminated, the gratefulness we acknowledge everyday... you see where this is going.
I feel that recurrence stats are the beginning, but they do not quantify everything else that we have applied since dx to improve our lives--see litany above.
There's a song I've been hearing a lot called "white flag" with a line in it: "burn the white flag" meaning no surrender. I get tired of being vigilant and not surrendering at times, but mostly I've adopted that attitude. I mean how many 58 year olds do you know that can take 11 college students on a 3 day white-water river camping trip with kayaks and rafts,paddle her own kayak with her own gear down that river for three days, sleep on the ground, hike, teach, make sure students are safe and happy for those entire three days, and then come back and teach the next day?
Thanks for the conversation, because I needed it....
Big love
Claire in AZ
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Hi, Claire - I'm so sorry; I did not mean to imply that your life isn't very rich, full and lively - far from it. (See white water trip with students, above.) I was thinking a) of strategic planning specifically to get the jump on dates/places likely to ambush one b) my own failure to be pro-active about this and my own need to do better and c) other women who might read this thread later.
Your comment about the "dark umbrella" really resonated with me. Sometimes the umbrella's pretty small and pretty much impedes our view of what's beyond it. Other times, it's a huge umbrella - so large we forget it's there (or almost).
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Hopeful, I know you weren't implying that
I do recognize upcoming dates and know that I'm going to feel troubled by some anniversaries. The first anniversary I hiked the tallest mountain in Arizona (12,600 feet); happens to be right outside my door. I always try to do something powerful and active that makes me feel strong on anniversaries if I can, because it relieves fear and anger that surfaces during those times. Lately I've been doing a visualization at the end of bikram yoga sessions. We end with two breathing exercises, so I imagine myself in a pink-gold bubble, light coming from above and filling the bubble. I see cancer in some form (usually a friendly,stylized human of some kind) and make eye contact. I wave, it waves, we smile, and the agreement between us is "you stay on the outside and I'll stay protected in this lovely pink-gold bubble right here". Then I see the cancer symbol crawl away. For some reason visualizing it as just a thing, and not a monster/beast/threat helps me understand that it will always be out there somewhere, but it doesn't want to any closer.
Sound weird? It works for me, though.
Hugs,
Claire
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Anniversaries are hard. I'm at my 1 yr mastectomy date today and having a rough time grieving my girls. My family has the notion I'm "cured" which we know isn't true
Seattle Claire has it right - we have to live for today. Cancer teaches us this lesson. I'm confused about how I'm supposed to know when it starts spreading. It was hard enough to find in the first place. And there's some very good meds you can only receive after a reoccurance. Why not prevention as a goal instead? That's what I find frustrating
But perhaps we need to switch our expectations from 5 years means cured, to living our life in the fullest now. It's easy for me to say, from someone who's really dialed in to emotions and anniversaries. I hope you can find some peace.
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I've a question am I the only onein this group doing 10 years of tamoxifen or one of the other ones?
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Kira1234, you might want to create a new thread and post on the "hormonal therapy" board. You'll get more responses, most likely.
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Hi,
I have the same anxieties as all of you for good reason. I had ILC, stage 1 in October of 2006, October of 2010 and now again October of 2016. Lumpectomy,radiation and Tamoxifen the first time, chemo,double mastectomy and Arimidex second time and now recurrence in skin on both sides requiring surgery and new hormone pill. The good news is my PET was clear and I won't need more chemo at this time. Life is good for me and I'm a ten year survivor. Good luck to all of you!
Nancy
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My heart goes out to you. The first month of the "journey" is the worst. Try your best to stay positive because that will help your recovery and healing the most. God Bless.
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Illinoisnan, how did you find your recurrences? Through a regular CBC blood work and check up with onc?
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Hi Claireinaz, I'm tatatootsie62 and am newly diagnosed with ILC, mutltiple lesions in
right breast. I'm having a bilateral mastectomy on 11/01 and I must be delusional; I am
not aware at this point if I will need chemo or radiation. I am the only person in my family
with breast cancer ( my sisters & I joke about me being the "lone boob" ). But not to make
light of the situations of others just like you and me, I worked in pathology, surgery and it
doesn't matter how much you know about diagnosis, prognosis....anything can happen!
But I am trying so hard to be positive and say to myself that I will win...and I WILL WIN !!!
I was not so concerned about recurrence until I read some of the posts by yourself and
IllinoisNancy....thank you for jolting me into reality. I am not sure if I am dealing with this in
the best way. Can a person stay so positive that they can become totally naive as to the
reality of breast cancer's recurrence despite surgery? I really value your advice.
BIG HUGS TO ALL OF YOU.
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Hi again, everyone. My check up went well...probably best I've had in a while since she always finds something to exclaim over in my labs (white count just below normal, or slightly low sodium or slightly high bilirubin) but this time: NOTHING. You should have seen me leave that place; I left smoking trails under my tracks as I nearly ran out the door. I wanted to get away before she found something scary
Thanks for the support. I guess I will just keep doing what I'm doing. She recommended Prolia for some mild osteopenia that showed up on a DEXA probably related to Aromasin (she said) but I'm going to do research before I agree to the injection. It is supposed to also protect against bone metastasis but there are negative side effects from the drug and I'm not ready to jump on the Prolia bandwagon just yet.
Claire
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Congrats on the good results Claire.
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Claire, that's so good to hear! I'm kind of envious that your MO pays attention to your lab results, mine doesn't even want to see mine. In his opinion, lab results are my primary care doctor's concern.
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Yippppieeee....glad to hear it all went well.
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Claire....just THRILLED that your checkup went great. I think the takeaway from your bloodwork finally being normal is that it highlights that full recovery from treatment is a long, slow process. Looks like you finally got there!
As for Prolia...agree that something to think about. I did not participate in the bisphosphonate study 7 years ago because I had the same concerns. The big question I had was whether exercise would accomplish the same thing. Of course, no one can answer this, but that is the route I went down. However, my bone density is still in the normal range. (I doubt that they segmented out exercisers when they did those studies.)
I hope you did something great to celebrate!!! I would have been painting the town three times over!
But will be the bath tub for me....need to soak away those 90 miles of cycling this weekend! Just had to take advantage of the most glorious fall weather ever. - Claire
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Saturday, November 5, 2016
Dear Claire in AZ,
I just joined this Forum last night, and am glad that your Anniversary has come and gone. Back in the sixties, when my dad was DX with prostate cancer, I think the public believed that if you crossed to the other side of FIVE years, you were safe. His doctor told me, "If he follows directions, he's got five years." Self-absorbed at age 25, I couldn't/didn't/wouldn't process what he meant. Now, forty years later, that guilt caught up with me, and I'm trying to help others avoid that problem: www.yourexitstrategy.org
I was DX and treated for Stage IIIA ILC, May, 2004. I remember being so apprehensive of my six month checkups, at M D Anderson in Houston, which then became annual appointments. At some point, maybe when we were traveling full-time in our motorhome, 6/2005-8/2013 I guess I got used to "NED" -- No Evidence of Disease, and finally quit worrying if cancer would be in my future. When it did metastasize to my bones, first showing as hairline fractures in my neck, October 2015--as we say in Ohio--I was flabbergasted! I set up a CARING BRIDGE account to document what I went through, complete with photos about the radiation to my cervical spine and the two types of collars I wore, 24/7, for six months.
My advice would be to write your worries on a big balloon and LET IT FLY AWAY! Use a Journal/Notebook, and write down everything you want to do--whether it's your Bucket list or something more mundane (might I say, realistic?) and then like Nike's famous ad: JUST DO IT!
I'm speaking from practical experience now--I regret days that I procrastinated, because now that I'm overwhelmed with Cancer Related Fatigue and have to reckon with turning 75 next week, I just can't do too much. My brain's still pushing out ideas, but It's so frustrating to give up and go "get horizontal" for an hour, to catch up with myself. I just had horrendous oral surgery, last Monday, and am trying to "process" how my childhood dental problems, young adult remedies, complications from cancer all worked together to create a "Perfect Storm." Had I'd known it was coming, could I have been more proactive? I don't know.
Hopefully you're back on track, enjoying life, and NOT distracted by these cancer fears. Live life now, on YOUR terms!
Best wishes,
Elizabeth in Bethesda
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