How do you deal with fear of recurrence?

lydiabest54 · January 2014

Although it has been 6 years since I was diagnosed with breast cancer, I am still in fear of recurrence. There are some days where I don't think about it at all, but whenever I hear of someone having a recurrence, it really scares me that the same will happen to me. After completely chemo treatment, the fear started to get really bad and I did not think I would even make it to the 5 year mark. But Oncologist tried assure me that I would. She said to me "I think you're going to make it to 5 years, but I don't know what's going to happen to you at 10. Her saying that has stuck with me and it still makes me afraid when I hear of someone having a recurrence 10 years out or more. How do you handle the fear?

Junebug3 · January 2014

Lydiabest54 I am 2 years out from triple negative. I think it is wonderful that you have 6 years in. I worry about recurrence all the time, feeling for all those little bumps and worry about all the aches and pains. At least from what I read that is normal. I try and tell myself everyday I give in to worry and fear, that is a day that cancer has taken from me and kept me from living my life. We have to live a healthy life and know that we are doing all we can do. You know as well as I do that sometimes it is easier said than done. I say live on the good news and worry about the bad if and when it comes.

Nettie1964 · January 2014

Wow, six years!! That's awesome! I, too, live with the fear, but I try not to let it control me! I try to live everyday to the fullest. Right now that is extremely hard as I only completed treatment on Oct 4, 2013 and it seems that within a month of that I started with back pain. So I live with the fear of spine mets but I'm scared to push for a scan. I did mention this to my MO and he didn't seemed concerned, he sent me to OT for swelling and stiffness from the radiation. I am assuming that he thinks that the back pain is related to this. Anyway, I see him again in February, so I'll se what he recommends at that time!

I also have scoliosis and the curve is on the cancer side and I've always had some uncomfortableness from the scoliosis, but since radiation it is worse. It is not constant, it is mostly induced by certain activities and I can't tell if the OT is helping or not. I know that sounds crazy, but it's just that everyday seems to be different, not worse, than before!

Anyway, it's always nice to find someone that has made years out! It's so sad that we live waiting for the other ball to drop!

I also become scared when I read about ladies with stage 1, no node involvement, and then all of a sudden, boom, they have mets!! WTH! I wish I knew how that happened!

All the best to you!!

And originally I was diagnosed TN but since the er receptors were 2%, they decided I should try the aromasin! Just didn't want you to wonder why I would be on the TN Board if you read my profile! Technically I am still considered TN.

JaneB1 · January 2014

The fear of recurrence is very real. Not a day goes by that I don't think about it. I think the fear has subsided a bit as I get further away from surgery. But it is always there. I assume you are triple negative since you posted in this forum. The very good news for TNs is that our recurrence risk profile is very different from ER+ cancer. ER+ BC carries a lifetime risk of recurrence. TN by contrast is more likely to recur in the first 1 to 3 years after treatment. But studies show that by year 5 or so, our recurrence risk returns to the same risk as that of women never diagnosed with breast cancer. And by year 8 it is very unlikely for a TN to recur.

So at year 6 NED you are in a very good situation based on the information given to me by a world renown BC MO in Europe whom I consulted for a second opinion when I was struggling with a decision on chemo. I am not sure why your MO said she did not know about your situation at 10 years out. I guess it is possible you have some genetic or other aspect that adds additional risk? Or it is possible that some of the studies about TN recurrence risk were published only 3-4 years ago -- after your conversation with your MO.

In any event, from everything I have been told, at 6 years you are in a good situation. I hope that is the case for you.

lydiabest54 · January 2014

@JaneB1, I was triple negative. I have heard the same thing that it is unlikely for triple negative breast cancer to return after 8 years. I can see now that that is not true. I was on the Team Inspire breast cancer forum, which is a website for women with advance stage cancer, and some of the women there have had recurrences after being more than 5 years out. So I know recurrence still does happen even after 5 years.

tibet · January 2014

Lydia, i think recurrence for TN after 5 years does happen but it is more seldom than other types of BC. The women you met at the Forum, who recurred after 8 yrs, are they TN or other types?

Meggy · February 2014

I just hit 6 years since diagnosis with no sign of recurrence. I found that taking action helped me so much in handling my fear. I ate the low fat diet because I really believed the science of a huge drop in recurrences in Triple Negative women in the study (something like 40% less recurrences). Also, I did moderate exercise (walking) which also drops the recurrence rate significantly (I think it was 30% less recurrences). In my mind, the low fat diet was chocking any remaining cancer cells of their precious fat and creating an inhospitable environment for them.....just like Temoxifen (sp?) for ER positive BC. I visualized my ultra clean body really pissing off the cancer cells and making them die off. Also, I drank very little alchohol...no more than one glass of wine every 2 weeks.

But, I've gotten arrogant and fallen off the wagon in everything since last summer. Reading now that they think recurrences can go up to 8 years will hopefully scare me straight again. I need to get it together. Looks like I'm headed for a divorce and I've got a teen doing really badly. But I think it's time to start putting myself first again....for their own good.

Oh and there's a country song that says "If you're going through hell, keep on pushing, you might get out before the devil even knows you're there....." Google it...it is an awesome cancer theme song. Even my kids would sing it.

hugs to all my sisters

Meg

karennitch · February 2014

I have my fourth and, hopefully final, chemo tomorrow. I
know that I have been extremely lucky. I have sailed through the lumpectomy,
savi radiation and chemo but I now have this terrified feeling of “What can I
do now”?

I have been scouring the Internet for something/anything. I
am a very proactive person and the idea that my treatment is done and now I
just need to “wait and see” is creating tremendous anxiety. I have read the book “After
Cancer Treatment: Heal Faster, Better, Stronger (it is good) and I am working
on my short and long term goals. The only goal that I am concerned about is
giving up alcohol. Although I know that will not be easy, in a way I am glad
that it won’t be easy because then it will feel more like I am doing something
to fight recurrence.

Any tips that anyone else has about how to cope with this
feeling of helplessness would be greatly appreciated!

CharB22 · February 2014

Hi...I haven't posted in quite a while, but this topic is timely. I just made it past 2 years. My breast surgeon gave me a hug at my last appointment and told me "I made it." So, what did I do? I went and got a new job! Now I'm scared to death. I'm the major breadwinner in my household. I took a job at a University because my boys can get free tuition, but they won't be going to college for 3-8 years. At the time I accepted the position, the fear of recurrence was not there. But now it's creeping back...I'm hoping that it's just nerves about the new job (I've been at my current job for almost 8 years). But now my right arm is achy and even the breast. I keep telling myself that I'm fine. I'm fine...I'm fine.....

Lauralind5 · March 2014

I too am struggling with this. I finished active treatment at the end of Dec. I don't know how to live my life fully under the umbrella of recurrence. Ive even had dreams lately that I have mets. UGH. And not having scans unless you have symptoms, just freaks me out and makes me paranoid about every little ache and pain.

elimar86861 · March 2014

I like the post, by JaneB1, which points out that 6 years out is great for TN and that your risk has reduced greatly by this time.

Keep in mind that before most of us got the first Dx, we had a 12% risk to get BC in our lifetimes. Given that info., were you at all fearful of those odds? I can't say that I was. As I get further out from my Dx, I do feel like I am able to live with the future risk without having particular anxiety over it. It takes time. I've said recently that it even takes mental will power. Sometimes it even takes medication and/or counseling, but I don't think a life of fear is a good thing.

Maybe look at it this way: Auto accidents are pretty common. Some are fatal. Has that stopped you from driving?

p.s. I do think your surgeon is being a little doom and gloom-y, but even the healthiest person doesn't know what's coming five and 10 years down the road.

yellowdoglady · March 2014

Now nearly five and a half years out. I can say that I had no energy the first two years. I'm strong again now. It takes some serious time to heal from nearly being killed, and if that's what it took to have me here today, I'm okay with it. In the beginning, I never thought I'd see a sunrise this year or be cooking Spanish paella.

Lauralind5 · March 2014

Yes elimar Im glad to see Jane's post as well, but my particular risk is a LOT greater than 12%, being triple negative and node involvement, so that's where the fear comes from.

elimar86861 · March 2014

Lauralind, I get it. I do. I think all of us who have faced cancer have (or have had) the fear, but at some point it is beneficial to mentally "take the power back from cancer." If that does not happen, then the quality of our lives will suffer. A lot is written about the physical battle of cancer, but the mental struggle not as much. I am making the suggestion that everyone owes it to themselves to try to mentally get to a place where they can live again without fear. Exactly when and how and a person can get to that point will be different for the individuals, but my idea is that thoughts, actions and behaviors can hasten it along.

I think most people are subconsciously moving in that direction anyway, so how can adding a little conscious effort hurt?

Nettie1964 · March 2014

I guess for me, the fear will only relinquish once the odd aches and pains go away! As long as I continue to have "weird" stuff, then I will always worry about mets! It's just sad that there is no way for Doctors to prepare us for some of the things that will happen simply as a result of treatment and the reason I was given for this is that "it affects everyone differently" which I know is true, but dang, can't they give some kind of guide line?

Like for me, I have back pain, hip/leg pain and now as of last week, forearm pain! So is this bone mets, is this arthritis, is this pain from the hormone blocker (even though I'm technically triple negative - only 2% estrogen)? I mean, really, what is it??? This crap just sucks!

I've asked for, but not demanded scans! I've been told it is not necessary, that all lab work is normal, but I've read of women on these boards that had normal labs and actually had NO symptoms at all, and then BAM - METS!! So what do you do?

slanderson · April 2014

Definitely, meditation!! Such a source of peace and rest for my racing thoughts. It's free, can do it anywhere, anytime. It really works for me.

jenjenl · May 2014

Alcohol has helped me tremendously

How do you deal with fear of recurrence?

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