it's been almost 5 years, why am I still scared?

annie7216

Hello everyone,

I haven't been to the forums for a while. I was trying to "get on with my life" as we are constantly told. I do live my life, but I live my life scared. Always worried, not just about me, but about the health of everyone around me. Is that an atypical mole on my son's back? Why does my daughter always have stomach issues? You get the idea. It's always something with me now.There are pockets of happiness, but they are few and far between. Anxiety has become my new normal emotion.I had dcis almost 5 years ago. My anniversary is coming up next month. I should be drinking wine and dancing in the streets. But instead I'm looking at my breast in the mirror and wondering if that slight discoloration that I see is a re-occurence.

Is there a trick to this I am missing? Must I go on an anti-depressant? If I do will I gain oodles of weight? 

You are an amazing bunch of women. Thanks for listening, I wish I could have you all over for cookies and tea!

Anne

Denise-G

Annie - I am almost 3 years out from diagnosis and totally understand what you mean. My brother-in-law is a 35 year non-Hodgkins Lymphoma survivor.  He described it best to me.   "Cancer Survivorship is the elephant in the room that nobody can see but you."   How true, huh?!

I'm better than I used to be, but just last week had an allergy and cold attack in my lungs.  Of course, the fear it big time.  But I'm learning to just let it be for a few weeks.  It usually gets better.  In the meantime, I clean my closets just in case.

I wish I could come over for cookies and tea.  But chemo made me allergic to gluten - LOL!  I have to laugh about it! 

 

annie7216

Denise G.

Yes, the elephant in the room analogy is perfect. I too have some good stretches of time and then some bad ones. But somehow I manage to link ANY new physical symptom to a recurrence.  Maybe I need to go clean out my closet, literally and figuratively. And not to worry..I'd make you gluten free dessert!

Thanks for the reply, stay well.

mrenee68

Annie - I am 2 years out and I feel the same way, constant anxiety over everything. I am beginning to wonder if I am going crazy. Yes I have happy moments, but I also have a lot of scared anxiety ridden times. Everything in my life just seems so stressful and yes my new normal emotion is anxiety. I hate to plan anything too much because "what if" always comes to mind. I am trying to keep moving forward but someone just keeps putting hurdles in my way, you know what I mean? I so wish this elephant would just relocate!

Anonymous

Annie : I wish I could say that you would never have to worry again but for me every new pain is something I wonder about.  Denise said it right about the elephant in the room.  Maybe we need a magic spell to shrink the elephant to a mouse !   Ha 

Denise-G

Thanks Ladies - how do we shrink that elephant?!  Any ideas?!

Lily55

my elephant is pretty big right now

cookiegal

did someone say cookies!

(Puff of smoke)

I am here with you. I don't feel a huge sense of relief about the big 5.

ruthbru

I think you can shrink it if you stay really busy; make plans for and then do some of the things that you've always wanted to do 'someday'  (even though that seems like tempting fate at first), do things for others that you find rewarding, get involved in some activities or hobbies that you always intended to try, exercise religiously (a great stress reliever). If you have a full and interesting life right now, it doesn't leave you as much time to think about 'cancer stuff'.

GrammyR

Anne - I did reach 5 years and celebrated by moving out west to be near grandkids. Within  6 months I had spread and pos node under my collar bone. Had 6 weeks of RADS and crossing fingers / praying for it to stop in its tracks. In the meantime live your life and try to shelve it for as long as you can. I am determined to not let it destroy me or my spirit.

Rene 

annie7216

Thank you for all the comments and suggestions,

mrenee, I do that too. Afraid to start new projects or plan events because maybe something will happen to ruin these plans. I don't like that I do this but I do. It stops me from fully living my life. And yes Shelley, there are no benign pains anymore. Everything means something in my mind.

Sorry that your elephant is pretty big right now Lily.So is mine.

Cookiegal, I agree, the big 5 is not as reassuring as we are made to think it is. Although my doc acts as though it's a major milestone. 

Grammy, I am so sorry about your spread. You have a good attitude.

ruthbru, you are right, busy is better. It gives our minds less time to go "there." I do stay busy but not as busy as I should.

A question for all of you.....are any of you on anti-depressants? I know this is a personal question, so obviously please don't feel compelled to answer. But I wonder if that should be my route. My breast surgeon, who I love, sort of made a comment that I should be able to control my stress without anti-depressants and it has made me feel almost embarrassed to ask for them If you do wish to share, please tell me if the anti-depressant worked for you. Or for tht mater if any other drug or supplement gave you relief.

Thanks so much.

Anne

ruthbru

I don't take an anti-depressant, but I know many people for whom they really help. Your doctor should NOT be brushing off your concerns with a 'you can handle it' attitude. Do NOT be embarrassed to explore that option!

Manu14

ruthbru: thank you for very sound advice that may seem simple but isn't always the easiest to follow through with. I've got the exercise part going well; but I know I need to work on increasing my activities and exploring new options. The mind can wander too many places when not occupied.

ruthbru

If you want some exercise buddies; come on over to the 'Lets Post Our Daily Exercise' thread on the Fitness Forum. A great group of ladies, at all fitness levels, and in all stages of treatment and beyond, who are encouraging and fun to hang out with! 

Ariom

I understand your feelings too. I thought I was doing really well, had accepted that I had the best kind of Dx (DCIS).  I had felt a positive shift, after the surgery and final pathology and had settled into a comfortable, "New Normal".

Then one morning after hurting myself while leaning over a bike seat, I massaged the sore spot under my Mx incision and found a lump. The fear hit with a vengeance and I was suddenly right back where I started, nearly 2 years ago. 

Fortunately, I had an appointment for my 6 month follow up with my Surgeon that week and he arranged an U/S and Biopsy, which was done the following week.

I was so lucky, again, just a cyst, and scar tissue, but it made me realize that for all my positive feelings and acceptance of the new me and the New Normal, there really is an Elephant in the room, that only we can see.

I have pondered this, while walking my dog and although I do feel confident again, I know there will always be, a flutter of fear when I think about it, but I can't, no, won't, allow it to take precedence over all the good stuff, that's out there.

I keep myself pretty busy, have a great life, a wonderful man and family and lots of genuine, great friends. I also belong to a fantastic BC women's group, where we all enjoy the support of each other. 

I think we all just have to do what we can, to make the most of what we have. If you feel you need anti depressants, give them a shot and see if they help. Do you have other women who have been here, to share how you feel? 

I think it is just one foot in front of the other, one day at a time, I'd hate to let the specter of the beast win!

ruthbru

Nobody ever gets totally 'unscared'. I was at a movie the other night & for some reason touched the bottom of my jaw. There I felt a big, hard LUMP. I spent the whole rest of the evening in a panic (can't even remember the movie title). After the movie ended; I zoomed home, grabbed a mirror, and discovered the 'lump' was a bug bite!

peggy_j

Annie, I’m not sure if this is part of what you’re feeling,
but I kind of resent that some people (experts, etc) feel the need to tell me
what I should be doing now, or how I should be feeling. I particularly hate the
message that cancer is a wake-up call and I should be living life like I’ve
never lived it before. OK, that’s fine for some people, if they needed a
wake-up call, but…I was happy with my life before I was Dx’d. I had already
made important life changes. I didn’t need cancer to help me be clear on my
life priorities. Anyway, rant over…but if you’re feeling that way let me say I
can feel your pain…

I’m 3.5 years out and while my health is good I’ve had a
buttload of cancer screening tests since I finished BC Tx. (they found an
ovarian cyst so we monitored that until I finally had it removed. Benign. Yay!
But not a typical benign cyst, so no docs could say for sure what was going
on.) Anyway, I agree w/ the suggestion to stay busy but I think it also helps
to acknowledge these feelings. When I started freaking out about the cyst
(could it be cancer. yee!) I went to a support group. The counselor said that
sometimes post-TX we might still have unresolved issues, and if these feelings
come up it can be good to take the time to feel them (rather than stuff them
down.). She also leant me this book, DANCING IN LIMBO. I only read a little bit
of it, but it was helpful. It’s out of print but I found a used copy for less
than $10, including shipping.

http://www.barnesandnoble.com/w/dancing-in-limbo-glenna-halvorson-boyd/1101207845?ean=9780787901035

I think the post-BC anxiety and hypervigilance may not be
that unusual. But…have you considered seeing a counselor? She might be able to
help a bit. Even though I’m an introvert, I find it helpful to talk to a pro from time-to-time. I
can say whatever I want, without fear of freaking out anyone or getting an
unhelpful response from a friend. (once when I mentioned fears to a friend she
said, “Don’t go there.” Hmmm….not helpful. I’m already there). It might help to
get validation that your feelings are normal. And the counselor might have
suggestions for ideas to help you cope. (i.e. I write in my journal)

The elephant in the room is an interesting analogy. What I’ve
found is that my anxiety tends to come and go. I’ve seen a counselor a few
times and the best description I’ve come up with, so far, is that I feel like I
am orbiting the concept of my mortality. Sometimes I’m on the far end of the
orbit, not thinking about it, but other times I can get pulled back very
quickly (like my cancerland scare.) So my “strategy,” such that it is, to
accept that this is part of life. (everyone is going to die at some point. I’m
just more aware of it than I was pre-BC-Dx). And when I’m on a close part of my
orbit, I try to be kind to myself, maybe plan to take it easy, and do more
things that nurture me. And I’ve seen that these periods do pass. And when I’m
on the long part of my orbit, enjoy! Do the fun things that make life worth
living! Not sure if any of this resonates for you, but I hope so. Take care.

BTW, I am not taking any anti-anxiety meds (or anti-depressants), but I do take melatonin to help me sleep more soundly at night.

Morwenna

So about that elephant.

What you need is a pair of binoculars, tweezers and an old fashioned matchbox.

Look directly at the elephant using the binoculars THE WRONG WAY ROUND. This will shrink that elephant to manageable proportions, then the trick is to catch the damn thing with the tweezers (have to be quick!), and then drop it into the matchbox and smartly close the lid.

Then bury the matchbox in the deepest recesses of your untidiest closet. 

You can't get rid of it altogether, and sometimes you will hear that elephant stomping around in its matchbox from time to time, but eventually you can learn to ignore it.

Good hunting!! xxx 

MerrellGirl

PeggyJ, what a GREAT analogy - "orbiting the concept of my mortality" - I have written that down, including your strategy for coping while in orbit. . .so on point.  Thank you.

annie7216

So so many wise women on this forum! Thank you all of you. I do think that death anxiety is a huge part of this problem that I have. Yes we are all going to die, but BC puts us face to face with it. And with the fact that our loved ones are going to die too. Ugh I just went there again.

I have started seeing a counselor to see if it will help. I figure it can't hurt. Sometimes I wonder if it's PTSD because that's sort of what it feels like. Jumpy and scared just like many of you have felt when noticing various lumps and bumps on our bodies. I have my second counselor appointment tomorrow; we'll see how I do. I will also go back to my acupuncturist too which I believe helped me as well. I believe that menopause also doesn't help this whole situation either.

I've been trying different natural remedies for my anxiety and depression. I tried 5HTP but I wasn't sure about it's safety so I stopped. I did, however, feel like it was helping for the week that I was taking it. I've tried passionflower extract which is so not harmful, but I haven't yet noticed a response from it. I've tried St. John's Wort in the past and I loved how I felt on it but my blood pressure rose as a side effect so I had to stop that as well. I don't know why I feel such stigma about the SSRIs and not about the natural remedies. They often do the same exact thing to the body.

I do exercise and it only helps a little. I was interested in trying a BC support group but I've been warned that DCIS women can often be scared by those with more severe diagnoses and that their presence can sometimes be resented. I certainly don't want to cause anyone more stress.

Thank you again. All my love to you all for taking the time to reach out to a sister in need.

edwards750

Annie - I am the poster person for anxiety so u can imagine what the DX did to me. By the way I was that way before I got the C word. 

I don't think any of us will ever totally eliminate the fear factor from our lives but what we can do is divert our attention elsewhere as much as possible, join a support group - I have and love those ladies and for me I put my fate in the one person who controls it. A lady who just passed the 5 year mark told me if it comes back she will deal with it same as before. I asked her how she does that and she said practice. Something to think about. 

Diane 

ruthbru

I definitely think we all have PTSD to one extent or another. Have any of you ever tried hypnosis? I am a horrible sleeper (worse yet since BC). I bought a 'Stress Reduction through Hypnosis' CD on a whim & much to my surprise it really works.....knocks me right out. Might be worth a try anyway.

lbrewer

I have seen many times that what we experience as bc patients is VERY much like PTSD. I would like to find a counselor myself.  I feel like I am always afraid and I know that stress is one of the worst things for cancer patients. I tried a stress reduction class but just getting ther caused more anxiety.  My husband says I am always sad. I tried antidepressants but I can't stand they way they make me feel,  

lyzzysmom

I cannot take SSRI anti-depressants but I was already taking low dose lorazepam (ativan) for sleeplessness when BC struck. They were lifesavers. My BS gave me a few extra to get me over the hump and now I just take one if I am feeling particularly anxious or need extra help with sleep - usually a single low dose about every 2 or 3 days. They give me no side effects and they never made me gain weight at all. You probably should not take them every day but when anxiety strikes I have found them a huge help in helping me relax.

If my BS had made such a comment about anxiety  Annie, I would be very angry with her.

annie7216

lzzysmom - Yes I felt very judged when my BS said that. And very weak. Like I can't handle my stuff. I would love an anti anxiety med, but getting them from a dr is very difficult. I got some when I was diagnosed, but since then, no dr will give them to me. They all fear I will get addicted, they say, but I am a very non-addictive type of person. My sister's doc gave her some and she doesn't have bc, so she shared some with me. I still haven't taken any. I just like knowing they are there.

You're right, edwards750. When I am very very busy, I often don't have time to stress out. I just went back to work (teaching) so I've gotten a little better as a result. Do you really think I'd be welcome in a support group with a dcis diagnosis? I've heard that there can be some mixed feelings.

ruthbru - My new therapist claims he can show me some relaxation techniques, similar to self hypnosis. I tend to be a cynic about these things usually, but this time I'm anxious to try it out. I'm glad that it works for you.

lbrewer- there are some natural anti-depressants. I was loving St. John's Wort until I realized my blood pressure was rising as a result. But that isn't a usual side effect, s you might want to try it. Apparently, it's used with great success in Europe. The brand of St. John's Wort that I would recommend is Perika since that's the one that was used in the clinical trials. Other natural anti-depressants include SAMe and 5htp. I just bough 5htp but haven't tried it yet. The 5htp gets me a little nervous as there isn't as much research as there is with St. John's Wort. The SAMe I haven't bought just because it's so expensive. But it's next on my list. 

I've tried passionflower for anxiety but still haven't been able to tell if there is much of an effect. Passionflower is entirely safe. Ashwagandha is also good for stress. I take that but again, I don't notice much of a difference. I'm so looking for that magic cure.

ruthbru

Annie, let me know how the self-hypnosis works for you. I was a total skeptic, so was SHOCKED when it did help! 

Hopeful82014

Peggy, I'm with you in resenting all the palaver about cancer being a wake up call, a chance to reorder our priorities, learn to live a healthier lifestyle, etc. I hear a LOT of that coming from the professionals who are supposed to be there FOR us - the LCSW in the rad.onc. center, the LCSW in the breast care center, etc. 

Hello - I'm getting lectured about how I need to quit losing weight (by the rad. onc) and you're telling me I need to think about little steps, such as parking further away from the door of the mall??? (my pedometer step count yesterday - 17,375). I've lost several family members over the years, lived with a dear brother's  young diagnosis of a very deadly cancer, cared for my mother when she was dying (younger than I am now) and I'm supposed to need a reminder of the fragility and preciousness of life? I do NOT think so and I resent being told, in essence, that cancer will make me a better person. No, actually, it won't. I have less time, money and energy to devote to the causes I hold dear. I'm having to be more self-centered and assertive because my critical needs will be overlooked by the medical community if I'm not. And I'm definitely crankier as a result!!

End of rant - I've got to go do my usual Sat. evening workout - 60 minutes on the bike or 18 miles, whichever comes first. 

And yes, it is an elephant in the room - and sometimes it doesn't seem as though the room is big enough for both of us.

And for those of you with DCIS - I'd like to think I'd be out dancing in the streets if that were my dx - but I know that whatever our status, it shakes each of us deeply and impacts our psyches. This isn't a competition and there's no prize for having a higher number after the word "stage."

annie7216

Dear Hopeful8201

I think all of those messages that we get about cancer being a "wake-up call" and other nonsense, is in effect a strategy to help others feel better about the prospect of THEM possibly getting the disease. It relieves them to think that there will be a silver lining. Makes them feel like life makes sense. But there isn't a silver lining and life doesn't always make sense. People get illnesses who "shouldn't. Healthy people who live right and do all the right things. And this idea shakes people to the core because everyone wants to feel that THEY are safe and that this is something that wouldn't happen to them because they did X, Y or Z. . If there is a silver lining, then we have to make it for ourselves, but cancer doesn't give us one.  Hang in there.  

sgreenarch

Have read through this thread and you are one wise group of women. Good writers, too. Caught my eye because I'm coming up on 5 years and I'm going through a period of high anxiety now, suddenly, about breast cancer. My biggest problem is that I worry about worrying! You heard that right. Im usually fine. Busy, happy, sane, take good care of myself....

Just been through a period of very high stress. (War here in Israel this summer. lots of incoming rockets, sirens, then running to bomb shelters. It's over now, back to normal, but in the midst of it all, heaps of family stress from here and abroad. (Some good stress, like a wedding, but still a transition.) Financial stress, work stress, too. Summary...just overwhelmed.

Spent last three months with palpitations, stomach aches, headaches, asthma attacks, bronchitis, etc. major anxiety attacks and hot flashes (seem to come together.) I've got my biannual appt w the breast surgeon tonight and I'm anxious. No symptoms, no special reason. Just shaky. Anyone else worry that stress will bring about a recurrence? Not sure what to do about this...life has its stresses. How to get through them without worrying that it will bring BC crashing back? How to stop worrying about worrying?

Thanks for the support. 

annie7216

Sgreenarch

Yes I worry that stress can bring a recurrence. It's one of the reasons that I decided to start a low dose anti-depressant. And again, we are told that we somehow caused this to happen and of course, everywhere you go you hear what a killer stress is. I read a fantastic book though, The Human Side of Cancer, that talks about being as negative and as pessimistic as you want to be because the studies that previously linked cancer with stress were seriously flawed. Its a great book and I promise it won't make you depressed.

I do hope that your biannual went well and that your stress has somewhat abated For me, it can be very cyclical. All the best.

Hopeful82014

Dear Annie. - I've just seen your very helpful and thoughtful response to my post from late October and want to thank you for it, as well as the recommendation of The Human Side of Cancer.

I really appreciate your insight and support and have to say that I'd not thought of the possibility you suggested. That's very, very helpful.

Sgreenarch. - I'm working with variations on thought stopping techniques when I start trying to read the tea leaves or obsessing about results. It's been pretty successful. I hope you can find Your own ways of setting down the burden of worry, too. Hopefully, you had a reassuring review of your situation and can take some deep breaths and go on feeling more ok with everything.