Is it realistic to think you'll never get a recurrence?

tangandchris

I find myself thinking/worrying about recurrence at least 1-2 times a day. I might just have a fleeting though of it or, just really obsess on it for awhile. But this does happen to me daily. I almost feel as if I know this will happen to me and I'm just prepared to hear those words. I've always been a realist, dh teases me and says no you are a pessimist. haha, which one is more accurate I don't know, but it is what it is.

My MO never really helps me with this either. She talks in circles about this and ends up confusing the hell out of me, which I think she does it on purpose. I'm seeming my BS in January and I'm gonna talk to her about it too.

I agree though...at some point we have to compartmentalize these fears/thoughts/obsessions about what could happen.

((hugs))

farmerlucy

This is a very interesting discussion. Just in the past few weeks ( I'm heading on three years post dx) I realized I've finally let go of issues related to the initial diagnosis. I mean I obsessed about every little thing - looked for answers everywhere. Now suddenly that chunk of the big scary BC iceberg has broken off and fallen into the ocean never to be seen again. As for the recurrence issue it is still there but it has quieted down. Honestly never did I think that it would take almost three years to get to this point. Hugs and blessings to you my sisters.

shelleym1

farmerlucy I am so ready to get to that point.

Meow13

I wish we really had the ability to tell our brains to forget about what may or may not happen in the future I would gladly have swallowed that medicine. Time heals all wounds they say.

Nancy2581

I worry about reoccurence. I know this sounds stupid, but I know several people in my neighborhood that have had BC. One is 10 years out, one is 7 years out, and the other two I am not sure of. None have had a reoccurence. In my head I think watch me be the one who ends up with a reoccurence. I hate that I do that and right now every new lump bump ache or pain freaks me out and I think what if it's BC. I hope with time Iwon't worry so much. I wish I could think like my hubby. He flat out says my BC is not coming back. Humph wish I were that confident.

exbrnxgrl

I wish I could tell you how to get to that point, but worrying about whether bc will come back or not won't change anything. It just robs you of today. I am stage IV, and rarely worry about whether I'll have progression. I don't want it, of course, and do what I can to treat it, but worry doesn't change a thing. This is my way of fighting bc. I just refuse to let it steal my life before it absolutely has to

Jorovin

Reoccurrence always seems to be our biggest fear. Cancer and I met in 2011, unfortunately margins weren't clear so it took two lumpectomies and rads, a year later a new site was found in same breast, another lumpectomy. 2013 was a good year no sign of the cancer demon, unfortunately this 2014 summer it popped up in my cervix, which sucks since we are trying to conceive. Doctors hacked away some more of me, but I AM STILL HERE! I lost a dear friend who had trip neg stage 3 breast, she beat that site but it got her bone and liver stage 4, she went quick. On a happier note I have met many women who are years, and decades cancer free!! Some of us just fall in that unfortunate % of reoccurrence. Just be your own spokes person, go for your follow ups on time, no procrastination. And I know sometimes I feel like a hypochondriac but if something feels off don't shake it off, you know if something is not right, and if your doctors don't take your concern seriously, then get a new doctor.

Momine

"Is it realistic to think you'll never get a recurrence?"

Define "realistic"

I was looking up survival stats last night (bad idea). For my type/stage/particulars, the 5-year survival rate is pretty respectable - somewhere between 70 and 90% depending on the study. The 10-year rate is not so good, however, falling somewhere between 40 and 50%.

I do find it tough to live with. Not because I am afraid, but because I feel like a Pollyanna if I let myself believe I might be in the 40% that will live 10 years and beyond and then, conversely, I feel like I am embracing defeatism if I plan around not being here in 10 years. I also find it tricky in terms of things like retirement and other practical issues. My docs advocate spending rather than saving, which tells me that they do not have great faith that I will last, which, of course, only makes me stubborn and determined to show them - and round it goes.

Anonymous

The stats are never up to date. Just saying.

Momine

Claireinaz, I know and you are right, but that only makes it all the more maddening. What do you believe? Where do you look? etc.

My basic approach is to enjoy as if I am going to die tomorrow and plan as if I am going to live forever. Usually that works OK, but sometimes it gets really confusing

Anonymous

Momine, I try to think (and my oncologist agrees) that the stats we read are less accurate and hopeful than the current research suggests. IOW, when I see "30%" I think 20, etc.

I still think we change our own percentages by what we do, how we live, what we eat, how we move, where we live, tamoxifen, arimidex, vitamin D supplement, aspirin, etc. You know what I mean.

I think if any doctor told me to spend instead of save because I had a 50/50 chance of being alive after 10 years, I'd fire her. Grrr! Let's show em!!! A very big bird flip to little "c", courtesy of Claire in AZ.

Momine

Claire, lol, no they have not given me percentages. They avoid percentages, for the reasons you give. But when I challenge them a bit, using issues like money that are indirect, the message I hear is that my chances are not great.

Anonymous

Claire, I do the same thing as far as "adding" percentages for the new advancements. In my case, I'm doing a lot of "optional extras" so I add 5% for Perjeta, 5% for Kadcyla, 5% for OS+AI and 5% for mast+radiation, even though I was in the "gray area" after chemo. Then I feel good about my prognosis. That's on a good day. On a bad day, I start thinking, "well mast+radiation is only localized treatment and Perjeta and Kadcyla haven't been proven for lower stage and OS+AI has been proven but what if it doesn't stop my periods and I want to break early from hormonals anyway to have a baby..." And then I think about all the things I have stacked against me (stage III, grade III, young age, subpectoral node involvement) and I can go to a very dark place.

I'm too chicken to ask my doctors about what they think my chances are. The general impression I get is that I had a good response to treatment, which improves my prognosis considerably, but that I need to keep being aggressive because I'm "high-risk." For example, no one tried to talk me out of OS+AI. On the other hand, everyone's been fine with my plan to stop hormone treatment and have a baby in a few years, provided that I go back on after. So I find that encouraging.

Momine, I'm a bit jealous of you because it seems like your recurrence risk is further out. I'm never out of the woods completely due to the ER+ but if I recur, it's mostly likely going to be in the next two years. I'd MUCH rather recur in 8 years than 1 year. I would've been able to recover and enjoy some cancer-free years, knock some things off my bucket list and hopefully in 8 years there will be new drugs that will prolong life much better than the current drugs do. A quick recurrence is my worst nightmare.

Momine

Badat, the first 2-3 years are high risk, true. I was watched very closely in the beginning. I am also ER+, which is actually a good thing, since there is treatment aimed at it

Anonymous

Momine, correct me if I'm wrong but I thought when recurrences tended to happen varied by subtype.

Luminal A: Recurrence risk is lifelong. Modest risk in the first few years and increases as time goes on.

Luminal B: Recurrence risk is lifelong. High risk in the first few years and then decreases as time goes by.

Her2 Type: Recurrence risk is very high in the first few years then drops off. After five years recurrence risk is almost the same as someone who never had cancer.

Basal-like: Same as Her2.

So the way I interpret that is that since I'm Luminal B and you're Luminal A, I'm more likely to get a quick recurrence and you're more likely to get a later recurrence. If I had to chose (what a game of would you rather, huh) I'd prefer a further off recurrence. I just want a break...and to give a chance for the science to catch up.

tangandchris

What is the luminal stuff you are referring to?

This is a very interesting thread btw

SpecialK

tang - this is a reference to the subtypes of breast cancer, here is a link:

http://www.breastcancer.org/research-news/20120925

 

Claire_in_Seattle

I live my life with the assumption that this is highly unlikely, and if it does happen, I will face the music at that point. For all of us, the risk gets less and less as we go out in time. However, it remains higher for Luminal A than for other forms of breast cancer.

One thing I also want to mention is that the data for patients who live 10 years or more measures the effectiveness of treatment 10 years ago. New therapies are being developed all the time, and now genomic testing is able to match specific genetic mutations to those therapies that are most promising.

So instead of waiting for the "other shoe to drop", I go on and live my life. I do make sure that I exercise, and I eat a reasonable, but not perfect diet.

Because for me, the big lesson from breast cancer is not to squander the time I was given on this earth. - Claire

shelleym1

I know exactly what you mean by hoping for a late recurrence (if a recurrence has to happen).

Lucy55

Claire.. You have a great attitude... I want to be like you.. Thing is.. some days I feel great..like this awful breast cancer thing is over..done and dusted.. Other days, I am overcome with utter fear that it will.come back... What a hideous roller coaster ride !!

.

Claire_in_Seattle

Dear Lucy (my mother's name!).....it takes a while. But try to focus on things that bring you joy. It takes a while for you to recover. I found that when I had other experiences to layer on top, it put things in perspective.

So make sure you ring in the New Year properly. I recommend the best champagne you can afford if drinking champagne is something you do. I am thinking of some pasta I got for Christmas with a cream-saffron-prawn sauce and salad to go with. You may come up with a better idea.

But you get my point. Then plan something extra-special for New Year's Day. Because 2015 will be the best year ever. I promise this. - Claire

Traveltext

Interesting thread for sure.

Claire. You say: "For all of us, the risk gets less and less as we go out in time. However, it remains higher for Luminal A than for other forms of breast cancer."

But according to http://www.breastcancer.org/research-news/20120925

"Luminal A breast cancer is the most common type of breast cancer and tends to have a better prognosis than the other three types. Luminal B breast cancer tends to have a worse prognosis than luminal A, but better than basal-like and HER2-enriched."

Lucy. Looking at your dx and treatment history, I'd say you're unlikely to have a recurrence any time soon.

wrenn

I think it is unrealistic to think that champagne will do the trick for someone diagnosed so recently. I don't think your fears should be minimized Lucy. They need to be acknowledged for you to relate congruently with your current situation. Hopefully in 5 years it won't seem so scary and pasta and champagne will do the trick but for you for now it feels more like fava beans and a nice chianti. Be true to yourself.

... I hope Claire pulls off her promise of a better year for you.

Momine

Badat, yes, I am HER-, so that would make me luminal A, you are right. However, the research on all this is still sketchy, and everything I have seen says that breast cancer recurrence risk is for a lifetime.

jojo2373

I think BCO needs to update their link on the cancer types as Luminal B can be HER2+ or HER2- depending on grade. I am Luminal B ER+, HER2- grade 3.

Momine

Jojo, thanks for that. I thought something was off, since it seemed to me that I was B last time I looked it up

Anonymous

If you understand Claire in Seattle's attitude, you'll understand her humor. She saved me from the depths of despair when I was going through chemo and rads--she rode her bike all through her chemo tx, and I think raced in there once as well. I said if she could do it during chemo so could I, so I kept up with my bikram yoga practice, weight lifting, and hiking throughout lumpectomy,chemo and rads and bmx(between infusions/post surgeries!).

Lifelong armidex looks to be in my future because of my hormone status.

She did echo what I already said: stats are old because of current research and new tx that seem quite successful. Remembering that helps me a lot. Thanks for validating my post, other Claire

I don't understand the Luminal A/B etc., but was always told by my MO that because I'm highly ER/PR+ and HER2-, that was a very good thing, so I don't understand why the longer we don't recur, the more chance we have of recurrence. But it's a crapshoot, right? And that's the hardest thing to accept: that we don't know, we will NEVER know for sure when and IF (very big IF) there might be a recurrence.

Personally I don't even ask for a complete cure. I ask for a drug with few side effects that simply stops cancer in its tracks, keeps from getting worse.

I think it's safe to believe that if we are doing good things for our body through diet choices, supplements, arimidex/tamox etc., exercise, and environmental exposures, we've helped ourselves to avoid possibility of recurrence. Note I said avoid possibility.

Enjoy life today. The goal for me is, when I do leave here, that others are sad for me, but I'm not sad for me.

Claire IN AZ

ruthbru

Of course it is realistic to think that you'll never get a recurrence! We all know it could happen, and statistics are meaningless for any individual person (I'm sure we all know of people with great statistics who recurred & people with rotten statistics who are thriving). When I was just finishing treatment and was wanting more & more statistics/percents etc. etc., my oncologist (a lovely man) sighed and said, "Ruth, you and I have done everything medically possible, the rest you have to leave to God (insert a higher power/fate/chance if you prefer)." So, yes, make some life style changes if you need to; get some exercise, get to a correct weight, find a way to manage stress, cut back on the processed food, alcohol etc. if those are problem areas for you (which will all lower your chance of getting other dieases too). And then make plans, go out and enjoy life while you can. Cancer or no cancer, we are only promised today.

ruthbru

I wanted to add two stories from my own family:

* My aunt was diagnosed with breast cancer in the 1960s when she was in her 50s. She had a radical mastectomy (the only choice at the time), no further treatment was offered. She died at the age of 88 without a recurrence. 

* In the 1950s my grandfather was diagnosed with stomach cancer. They removed 3/4 of his stomach and sent him home to die. And so he did......38 years later at the age of 92, never having a recurrence (and without any life style changes either.....butter on everything and a nice cigar after dinner!).

Theresanne

Like so many of you, I waiver..with some days feeling physically and emotionally great, other days awful. I'm three years out...lobular 2a, er/pr+. her2 neg. node negative ( 3 <1cm tumors). TAC chemo. Bilateral mastectomy. I'm vegan now, no added sugars in diet, nothing white, curcumin and other supplements, daily walking, lost 35 lbs with diet. Femara, absolutely no alchohol. Still, more and more terrified every day. My best friend had bc 12 years ago, node positive..doing great. She says all of this emotional worry will get better. It gets worse. I changed deodorant..and got a small reaction under my arm...nearly passed out when I saw this. This is my life everyday. Every small ache, headache, tummy ache is recurrence. I'm 54 and these changes should be expected, but I cannot deal with this. I feel like I now need an antidepressant. It's hell for me. I have to start and end every day with a Xanax. And I know...stress is horrible for cancer. I can't imagine living the rest of my life this way.