Do you get over the fear of reoccurrence ?

Marie711

I have been thrown deeper into the fear today. Seeing that Holley Kitchen died this morning from Breast Cancer, and A relative was in surgery for Breast Cancer, another relative had surgery for breast cancer last week. I wonder if I'll ever lose the feeling of waiting for the other shoe to drop. On top of that I sometimes see symptoms in my husband from his stroke earlier this year. I'm constantly reminded that we may not be here tomorrow. Life seems so fragile. Having breast cancer twice in 2015 only adds to the fear.

For those further out... Does the fear go away?

WinningSoFar

I've had reoccurences and I don't seem to be too afraid of more. You get used to everything, I guess. And yes, it does get better with time. As long as I'm fine today, I'll let next week take care of itself. IMO, denial is a good thing as long as it doesn't extend to getting your healthcare.

Kicks

I do not fear a reoccurance. I fought (and won already) and am ready to fight again IF I need to. There are no guarantees in life for another day/hour/second. I will live every second I am blessed to have to the best I can. We may not be 'here tomorrow' and 'life is fragile'. There is a fact - none of us will be 'here' forever and BC has nothing to do with how most of life on this planet ends.

Its up to you, where you choose to put yourself in LIVING your life.

( Who/what is a 'Holley Kitchen'?)

farmerlucy

I wish there was a magic pill for this but time is the only solution I know. We all have to work through it. Some take a long time some people need very little time. Four year ago I doubted I'd be here now even though I had a good prognosis. A wise doctor told me it would take a year or even two to accept the Dx. Hang on and put one foot in front of the other. Meds and counseling helped me. Psychologically I think we can only live in terror for so long before we find ways of coping. I hope your time in the desert is short. Gentle hug,

Marie711

kicks: Holly was a young woman who became somewhat famous by posting a video to educate others on metastatic breast cancer. She was hoping to make it to her youngest child's 5th birthday in a few weeks, but declined really quickly. Here is the video:

http://youtu.be/QDQ0FjP7J-c

Sjacobs146

I find that it helps to have low expectations, and be prepared for the worst. I assume that I will get a recurrence. If it doesn't happen, I'll be pleasantly surprised

AmyQ

Marie,

I am almost three years out and have not gotten over the fear of recurrence, even had it recur last September. I'm stable now but still it's in my daily thoughts and nightly prayers. I hate what cancer has done (or I have let it do) to my sense of well-being. I hate what it's done to my grown children's security, but it's out of my hands. I really wish there was a way to push back my fears and forget I have cancer. If you find a way, please let us know.

Amy

etnasgrl

I'm still actively in treatment, but I do sometimes struggle with the fear of a recurrence. It will mostly happen when I'm spending time with my son, (he's 11). I look at him and this fear just grips my heart and I can't bear the thought of not being there for him. It's tough. But....I'm slowly learning to not let that fear control me!
If I let it control me than cancer has won and I refuse to let it win. If I let it control me than I'm not really living and if I've learned anything through all this crap, life is worth living!

None of us....those with cancer and those without....are promised tomorrow. If a recurrence happens down the road, I'll deal with it the best that I can. Just like I'm dealing with my diagnosis now. That's really all any of us can do. Will constantly worrying about a recurrence keep it away or prevent it from happening? Nope. So, I'm trying very hard to not let it overwhelm me or keep me frozen in fear. Some days are easier than others, but I'll get there.

ShetlandPony

I worked hard to push away the fear and adopt the doctors' stance that I wasn't in danger. I think their minimizing my fear was a bad thing, because it added a sense of betrayal to the grief of going stage iv. Maybe it would have been better to fully face the fear and learn to live better with uncertainty from the start. Strangely, I think I am calmer now that the shoe has dropped.

Life is fragile. Acknowledge the fear and talk honestly about it, but don't lose today worrying about tomorrow, when worrying won't change anything. If the worst happens, you will summon strength and find support to deal with it. For now, carpe diem. Actually, always carpe diem.

Lily55

I refused to take the statistics on board.  And I work hard to trust in my own body to keep me as healthy as possible.  But despite all that there are times when I get a grab in my gut that twists and makes me feel so vulnerable....and adverts showing cáncer patients on TV can get me too.  I have been shown a havening technique and that does help, weird though it seems........

But it takes a lot of emotional energy to not succumb to anxiety and to not take any medication to help, as I don´t want to pollute my body with more chemicals........or feel a bit out of it.........and I do get very tired at times....................

solfeo

Seems like there have been several celebrity cancer deaths recently and that has been getting to me. These people have more money and access than I will ever have but still they can't outrun the beast. I'm a worry wort by nature and in that respect I'm handling it better than I would have expected. I think about it but I haven't had much anxiety since the beginning. I was just telling my psychologist on Monday that I don't think I will ever feel safe again. She told me most of her clients get to a place where they can go a number of days without thinking about it, but that no, it never really goes away. Sometimes I wish I was better at denial.

Denise-G

Fear of recurrence - it is always with me, but it has gotten better now that I am 4 years out. I call it symptom of the week. Before I get to absolute panic mode, I wait. The symptoms go away and life goes on once more!

My neighbor is 12 years out from cancer - she said the fear never goes away, it just gets quieter.

lisa137

I don't exactly *fear* it. I know it might happen, and I sincerely hope it doesn't, and any new and weird symptom will give me a momentary jolt, but I'm actually kind of back to how I was before BC in that I shrug it off pretty quickly. That said, if I had some symptom that really did point toward a possible recurrence or mets, I'd probably fall right back down the rabbit hole again. But so long as stuff can be explained away as a femara side effect and/or goes away pretty quickly or is intermittent, no, I'm not really afraid.

Meow13

I found I have no control over what my mind does. In the first couple months after diagnosis cancer was at the very top of my mind constantly trying to process how to live. Finally time pushed it to the back and I went a whole day without thinking about the cancer coming back. Who ever said time cures all must have been talking about this phenomenon. It will happen, there are other things to worry about I guess.

Marie711

I think I'm better and something brings it all back. Just found out my sister in law's pathology came back that her cancer is in the lymph node. I starting crying, but I think it was mainly for me if that makes sense. It just brings up the memories. It's only 2 months from my second cancer surgery. It feels like last year was forever ago...maybe with more time these intense feelings will fade...

Meow13

I like this topic because I don't want to worry anymore. My husband is so frustrating because he tells me to watch a funny movie or think of something else. Have any of you tried this? I have, it makes it worse for me. I have to talk it until it is resolved and I hate that I can't let go of the fear. And I hate that time has been my only cure. It is so nice to talk with my BCO friends who really understand the torment we go through.

Englishmummy

Someone said this week has spiked cancer anxiety, as so many people have been lost including a couple of ladies on the boards here, it is certainly the case for me. I thought I was doing ok emotionally, getting back on track, pushing the reality out of my mind, but now I feel floored.

Torment is right, Meow. My mum (who lives in Spain - we are in the US) was just saying today about not seeing her Grandchildren grow up - my eldest turned 13 yesterday. She wasn't laying on the guilt merely mentioning that she is not at the beginning of her life (she's 68 this year). This is in combination with a conversation about us moving to the East Coast, possibly, in the future..... I got really choked up for several reasons, mainly that yes, I now truly understand that we are not here for an eternity. I thought I had the world at my feet at 41 - happy, healthy, vibrant and carefree, and now my luster has dulled, my spirit somewhat deflated and my hearts in fear, especially for my children. Sometimes it seems I am spending my days waiting for the other shoe to drop! I hope that time really does 'cure'.....I'll be waiting.

Bcky

I had nipple surgery last week. My 5th and last BC surgery I hope. I am now at a place of 'What if it comes back?' ' How do I go on from here?' It is like cancer stole my sense of well being and peace that I took for granted before BC. I feel that fighting the fear of the cancer beast reccurring is very exhausting to my soul. I can go maybe 3 days normal living then I have to shut the door and recluse /rest. I hate that cancer stole my savings and a year from my career. I hate that cancer stole many things. I have to be on psychiatric meds/therapy/ BC support groups. Yet I want desperately for someone to tell me the nightmare is finally over. I want them to say I am healed. I want someone to say It will never happen again. I want someone to say that I can go on after this brave fight and know I fought a huge battle and won. No one is going to tell me that. I am NED. I am in remission. I also do not like that the Oncologist says my kind doesn't come back usually. I know she means well and that is her opinion. I have heard from other Oncs that I should be concerned.

7of9

To the original question posted....especially after a recurrence has happened...no. The fear never goes away. It's like the last three and a half years I sat waiting to fall through the cracks of my "it's probably not coming back - odds of 15 - 20%". I am an optimist, but would swear there are things I can just sense. It's why I only did partial reconstruction. Its why I examined myself so closely and (so pissed off at my oncologist) that I caught the damn recurrence. Not him who I'd seen just weeks before.

The last 3 and a half years I have had moments of peace, clarity, but also urgency. Remodel the damn house. Get my son started off in school, sports and really start what I hope are healthy and good study habits. At least get his trajectory going the right way...just in case. Now that it is back (local/regional - surgery next week followed by rads) I am hoping for another 2 - 3 years to get even a little further down the line and enjoy time with my family and most important to me, accomplishing or making great gains in things I want to see, do, and ensure happen if/after I'm gone. Sorry if this is a little of a downer, just adapting to reality and also maybe to the colder side of things - not unlike how soldiers, police officers, first responders etc...others who constantly have to walk down dangerous and unknown perils. And so I send you out as sheep among wolves...be as wise as serpents, gentle as doves. For nights, there's ambien. There are many days when I didn't think about it for hours and hours but for me, it's always there. I don't think I want to ever let it go completely (the fear) because in a way it keeps me sharp and spurs me to do some things, ok many things I would have put off or been more conservative as my former self. That is one thing that makes you better after / with this disease. You don't go walking around oblivious to the fact that no one is promised tomorrow and the hardships that fellow men and women could be going through right in front of you and you never know it. The fear makes me humble but sharp if that makes sense....probably not

labelle

A former co-worker of mine was diagnosed w BC about 8 years before I was. When we were discussing this not too long ago, the fear of recurrence, she said she hardly even thinks about it (having BC) anymore, mostly only when she is due for annual mammogram. So some people, somehow, do get to that place, but I'm sure not there yet.

Adamary

hi

I had a lumpectomy 18 years ago and last week it returned same breast but very small ,they have suggested Mastectomy ,my biggest fear is the GA as I have COPD brought on by radiotherapy 17 years ago since then had phneumonia very poorly ,then hear murmur , I could go through with a local but nobody will hear if that !!!!

Isn't it odd the shock of my cancer returning ,didn't nothing to stop me worrying more about a GA

Anyone been through the same fear and cone out the other side , it better still found a aneathologist willing to do local

Thank you out there

Englishmummy

Nooooo, Oh AdaMary, 18 years clear...then bam! That makes me wanna cry! I think the GA (or not) is all about your comfort level and as much as GA has improved over the years your Dr should respect and fully address your concerns. They use local in Europe all the time, infact my mum had hip replacements under local - she has no comorbidities but told me she'd never do a GA again. If that's what you feel is best: I say push for it. I attached a couple of links with info on that technique along with a link to a discussion board on that subject on here:

http://www.ncbi.nlm.nih.gov/pubmed/15730454

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC249786...

https://community.breastcancer.org/forum/91/topics...

I hope they help.

Prof_Kathie

I hope every one of you on this post are able to find some peace of mind. How can anyone who hears those words, "You have breast cancer," ever get to a point where recurrence isn't on our minds. How can we not fear it when there is so much to love about being among the living?

I am neurotic by nature. If I have nothing to worry about that day, I'll find something to worry about. Here is what gets me through the ongoing thoughts of recurrence. I am fortunate that my Oncotype DX score is 12. The probability of distant recurrence in 10 years is 8%. It seems like the statistics/probabilities are really all we have, doesn't it? I would try to focus on any positives you have in your life right now. How do you feel today? Each day that goes by, especially after we hit that 5-year mark, decreases our likelihood of recurrence. I know these odds are not a perfect guarantee, but we've got to hold on to whatever we can to keep us sane, right?

For those remarkable women on this post who have experienced a recurrence, I hold positive thoughts for you. I also would like to know how you found out you had a recurrence. I have never had a scan. When I see my breast surgeon, she feels my armpits, incision sites, and neck area. If all feels "normal," she sends me on my way. My oncologist just asks how I'm doing on Arimidex.

Thank all of you for your posts. This is my first post on this discussion board, and reading about you all has been inspiring.

ShetlandPony

Adamary, here is one more BCO link for you, about an alternative to general anesthesia called Paravertebral Nerve Block and Propofol. I have no idea if it would be an appropriate option for you; you could talk to your doctors about it.

https://community.breastcancer.org/forum/73/topics...

Thank you, Prof Kathie. To answer your question, the metastatic recurrence was initially found with an ultrasound for strong but intermittent abdominal pain, and my annual breast imaging that led to a biopsy. My blood tests were normal. I think our follow-up doctors should poke us in the liver area, along with the breast and armpit exam. Looking back, I had subtle pains that I attributed to other causes, and the doctors never asked about it.

Even with all that has happened, I do have plenty of time when I am not thinking of cancer. I think we should seek out "flow" activities, the kind where we are concentrating intensely on doing or learning something. Dance class does it for me. The other thing that helps me is to tune in to my senses as a way of being in the moment rather than worrying about the future: Am I ok right now? Yes. What do I see, hear, smell, and feel?

AliWel83

I'm having the hardest time dealing with my fears of it reoccurring. I'm lashing out at my husband and every little pain I get makes me automatically assume the worst. I've been cancer free for 2 yrs and 3 months. I thought that after treatment and surgery my life would go back to normal. Well my new "normal" is just as bad as having cancer. Does anyone have advice on how to stop being so angry?

farmerlucy

Effexor really helps me take the edge off. I still have anxiety but it is manageable. Exercise helps me too.