Always in the back of your mind
I’m 6 years out. Recently had some head/brain episodes that led to a brain mri to check for metastasis. I found out Friday that all is fine (except no explanation for what actually happened). I was doing ok yesterday (the day I as told I’m fine), but I spent all last night crying. For several days before my appointment, I feared mets and that I’d leave my teenage son without a mother. High anxiety! Now it’s all releasing.
My drs sweet nurse suggested I see their oncology psych for help with coping with the anxiety. I’m skeptical that anything could really help, aside from Valium. 🤔 How can we NOT have anxiety when we’re faced with the possibility of metastasis? I honestly don’t spend my life worrying - I’ve felt like I’ve gotten on with my life. But when you have strange symptoms, why wouldn’t we get concerned, knowing the potential?
I’d love to hear how you all cope with scares. Are you taking any meds? In support groups? Or do you just roll?
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I’m still in active treatment, but I find myself worrying about reoccurrence all the time. I am on meds, see a therapist, and go to a support group through my cancer center. I can’t imagine where my head would be if I didn’t have these supports.
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I was 7 years out before I had reoccurrence. Had a few scares during that time. If whatever was presenting for more than 2 weeks I’d see my PCP. Wasn’t on anxiety meds. Get support here, the in person groups didn’t work for me. I don’t think about it much, even now. I go about my days doing my thing. If you need help, get it!! Nothing wrong with that!!
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I really had been doing great. I guess this was just too real for me this time. I am kinda thinking I may see that onc psych. Partly just to get validation that I have a justifiable reason for concern. Fritzmylove, I felt like that too during active treatment! I did soooooo much research, and carried my binder of all of it to every appt. That was a little crazy, I’ll admit, but at the time it was my security I guess. I needed to somehow feel that I had some control. But for several years now, it’s not been an issue. (It does get better!). I’ve even had multiple breast biopsies since, and that wasn’t that huge of a deal. But this was. I figured I could still survive recurrent cancer in the breast, but brain mets... a different story.
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The more I mull this over, I’m sure my anxiety was really influenced by my friend that died of brain cancer. We both got cancer near the same time, I had been his secretary so felt close to him, we were there for most of his last year - and he lost the fight. I didn’t. So to get a brain-thing 6 years to the day of his first seizure - how could I not get pulled right back to all of this?! Ok, I just reassured myself that I’m not crazy lol.
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SophiaMarie I'm so sorry about your friend. You’re right, I bet that would explain a lot of the emotions you’re dealing with right now. I’ve been told that people that have gone through cancer treatment can develop PTSD, so something like a friend’s death or cancer diagnosis could for sure trigger that. Hugs to you!
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Thank you Fritzmylove - hugs to you as well!
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You're driving down the highway of life, the day is bright, the road is clear and the view ahead is spectacular. BLAMMO! A big old breast cancer leaps out of the ditch and splats on the windshield. Holy crap, you can't see the road! You swerve, you duck to see under it, you turn on the windshield wipers and squirters to clear the damn, huge thing. But it's stuck there and you are leaving the road and hitting the ditch. You slam on the brakes, get out and grab that stupid cancer by the back of the shirt. It's not quite dead. What do you do with the stupid thing? You open the back door and throw it in there. You reapply your lipstick, smooth your hair and get back behind the wheel, shaken, rattled, trying to get your bearings. There are messy smears on the windshield, the view is not so clear. You drive on. But when you look in the rearview mirror the idiot is sitting there with a black eye and missing teeth and hair all sticking up, grinning at you mutely. This dipshit passenger tried to kill you once, might try again. How do you focus on the road ahead with a disaster like that in the seat behind you?
Anxiety? I think of anxiety as something you imagine, conjure, create out of nothing. Breast cancer is none of those things. It is a real problem with your physical body that has to be carved out with a scalpel and nuked with radiation and hammered with poison. Anyone applying the word anxiety to this REAL situation is underplaying that you are Dealing With The Truth, and not some hypothetical situation. The idiot in the backseat is a wildcard and you do not know what he's going to do. This is real. This should make you scared shitless. Anxious? Pffft. Anxious is for root canals and new hairdressers.
SophiaMarie, it took a long time for me to get up in the morning and not think about cancer first thing. That is both a blessing and a curse. It is a blessing in that thinking about cancer 24/7 was sucking the life out of me. It smothered me with grief and sadness and an acute awareness of everything I will lose if I die now. It is a curse to forget about cancer because I fully expect the day will come when, like you and THOUSANDS of others on this site and globally, my hard won feeling of security will be popped by the asshole in the backseat. Forgetting about him is both a joy and a risk. Forgetting about him allows the day to be brighter, but then when he does go crazy again it's all the more shocking because you let your guard down.
Some people are gifted in that their power of pretend, their ability to get on with life with no thought to the unwanted passenger in the backseat is truly astonishing. It takes an incredible amount of what...will power?...denial?...faith?...I truly don't know, to live as if you are not bothered by the constant threat of more lunatic behaviour from the backseat boob bandit. You may have your hands on the wheel again and your eyes forward but you know from past experience that things leap out of the ditch and slam into the windshield for no known reason. Or they lean over from the backseat and grab the wheel out of your hands. Knowing this you still drive that car, dread and all, fright and all. Anxiety and all. Your reaction seems perfectly normal to me. Sadly, horribly normal. I know I would feel exactly the same way you are. You are acting and feeling the way sane people feel in the face of real situations.
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God Bless you, Runor! No one and I mean no one can say it like you can! Thank you for putting our feelings into such fine prose.
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Wow runor - you made me cry. You said it perfectly. It’s so unbelievably important to be understood, and no matter how much people on the “outside” try, they’ll just never know. I’m so glad I found this place. Thank you so much for taking the time to write all that. It’s perfect. Unfortunately. I’d like to share your words with some friends, if you don’t mind.
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Some time ago I heard anxiety defined as worry/stress/etc. about an undefined something that might happen and fear as worry/stress/etc. about a defined possible event. I believe we experience fear, not anxiety! As runor put it so well, we know who/ what is in the backseat.
My image has been waiting for the other shoe to drop. Keeping an eye on the backseat occupant is even better. Thanks, runor.
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Wow Runor, very well said! Last night as I sat in the movie theater enjoy the very delicious and surgery treat of sour path kids I couldn't help but think OMG what did I just do to my body, cancer feeds off sugar, why did just eat these. And earlier that evening I had a glass of wine with dinner. Its shame because I know I should be able to enjoy these things in moderation but its so hard to do so without the cancer fear nagging away at your brain with every little thing that you do.
I edited my post to add this part...I can totally relate to your anxiety Sophia Marie so don't beat yourself up! If Im behaving this way over something I've eaten I can only imagine how id react with an actual symptom.
Hugs to all!
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SophiaMaria, yes, you may share as long as my name remains as author, if anyone asks, which is unlikely. Hugs and thank you to all.
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thank you runor!
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Runor, Well said! Thank you for putting the struggle into words that ring so true for me.
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I try to NOT think about it, but I'm waiting to hear the result of a biopsy from one of my other cancers that may have recurred, or left a souvenir behind. That keeps things in the front of my mind for now. But at a certain age, there are other health issues that could also jump out to bite us in the ass, so it kind of puts cancer in perspective as just one other creepy thing hiding under the bed. I've reduced most of my worrying to "Welp, hope I'm still here tomorrow" as I fall asleep.
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You are an awesome writer runor! I could never put into words the crazy ups and downs and fear that i have on a daily basis. Your analysis is absolutely spot on. I love how you said that forgetting about the evil jerk in the back seat is both a joy and a risk. I'm so grateful that i caught it early and happy that i'm finished treatment but sadly, as we all know, that doesn't guarantee a damn thing. I am terrified to let my guard down and have him punch me in the gut. I've had so many people say to me "oh you must be so happy that you beat it!! " and I'm thinking, beat it?!!! Hell you never know if you beat it!! That's the problem, you can never really truly relax and feel safe anymore. It's always lurking in the back seat. I'm scared to say I'm cancer free or i kicked cancers ass because I'm scared to taunt the monster! It sounds ridiculous when i say it out loud but in know everyone here gets it. Thank you so much for your words runor and thanks for listening everyone
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Yes Runor, your analysis is brilliant.
I can say from experience that after my first BC, I was filled with fear for years. Every ache and pain I checked it out. And I was taken seriously too. Then as years went by, the boob bandit in the back seat I got used to. I thought less and less of BC recurrance, but realized it was always there. I adjusted to the new reality. However, after 13 years, out of the blue, I was dx again. In the other breast. And this time, it really hit me. And now, two years out from my second dx, when I get unusual symptoms, I panic. I literally have panic attacks. I did see a pysch onc and he told me its normal. He was not surprised. I so totally agree with Runor that it is normal. But as time goes on, you do adjust to this fear. You realize that its the new normal. But, this adjustment does not protect you from the impact of another dx. You will be upset. Its normal.
Hugs to you.
wallan
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I was just going to say that I think the amount of worry/fear/anxiety a person feels is greatly influenced by how that person deals with other fear or anxiety producing issues in their lives. I also think that anyone who's watched someone else experience something similar with a bad outcome would be more likely to have enhanced fear or worry. I have a close friend who's teenage niece was killed in a random mass shooting. Now, whenever a shooting incident happens nearby (sadly rather often here in Colorado), she has a lot of trouble handling it (she has two teens herself). She's a rather anxious person in general but her past experience makes it so much worse.
As for this: "Some people are gifted in that their power of pretend, their ability to get on with life with no thought to the unwanted passenger in the backseat is truly astonishing. It takes an incredible amount of what...will power?...denial?...faith?...I truly don't know, to live as if you are not bothered by the constant threat of more lunatic behaviour from the backseat boob bandit."
I am one of those people. I don't live "as if I'm not bothered", I truly believe there is no bandit in the backseat. I've always been heavily influenced by statistics and logic, so I just naturally find that there is no reason to believe the cancer will recur. I would feel differently if the odds were against me, but the chance of distant recurrence for me is so low that if it ever happened it would be like the bandit just hopped in. I suppose maybe it's faith in the statistics?
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I choose faith
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I believe in science and statistics. But I also believe, based on personal history, that I'm kind of a crap magnet.
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SummerAngel - it seems to me that for most of us with early stage odds are that something else will kill us before the cancer; but still my odds based on Predict are really not what I consider great. 15 year survival rate for my type of cancer (incl treatment w 3rd gen chemo) is 78% https://breast.predict.nhs.uk/tool
so I think that means there's between 1 in 5 and 1 in 4 chance that the maniac in the backseat is going to grab the steering wheel from me in the next 15 years. I don't know. 1 in 5 or 1 in 4 seems a risk that's not easy to just brush off
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moth - my odds are better than yours - IDC, Grade 1, Stage 1 but I still feel anxious when it’s time for my annual mammogram. No guarantees I know and when I read posts of ladies with low Oncotype scores having a recurrence I panic. Mine was 11. Also my sister had a local recurrence after 4 years although different BC - ILC. She had a MX but no other treatment the first time. Intermediate Oncotype score.
Diane
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Moth, I understand. Your odds are quite a bit worse than mine, for sure. For me, there's only a 6% risk of death from breast cancer 15 years out - definitely nothing to worry about.
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Very well said and spot on!
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aaaaand now for the last month, I’ve had ovarian pain. Going in next week. Not nice that I’m past menopause. Yes, that guy in the back seat... whenever there’s something out of the ordinary, we can never NOT think it’s him.
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Sophia Marie, I was just looking over this thread and realized that it makes me grateful. Its honesty. You made the initial post in May of this year, (2019) and stated that you are 6 years out from a diagnosis and STILL that ugly asshole in the backseat, that Cancer, can lean forward and scream in your ear and rattle the hell out of you.
I feel that I should no longer be bothered by the spectre of cancer. I feel this because there is a subtle pressure from many directions (even here on BCORG) that I should 'get on with my life' find a new normal (that phrase makes me barf) and skip through life joyfully dancing, twirling and singing, ain't it great to be alive, I'm so very lucky tra lee tra la.
Uh. Not what's happening.
Things have changed from those months following diagnosis and treatment. I do have a lifting of the clouds. I do not think about cancer 24/7 like I used to. But now when I DO think about it, which is still every day, it's worse. Hard to explain. When the spectre of cancer lifts and you have good days, a little joy and happiness sneak in, then when you DO remember that this could kill you long before you should die, that hits you like a ton of bricks. That is no longer the constant, annoying tap of cancer, it's like cancer makes a fist and with all its might hits you right in the middle of the face.
Other people do not grasp this concept and until it happened to me, neither did I. Knowing you are going to die makes you live a different way. Not always a more comfortable way or more pure way. Getting cancer did not turn me into a saint. It just scared the shit out of me and has left me with a deep, deep grief that I can't shake. Oh, I live my life. But I have sorrow in a way that I never did. Because life is short. And people die. And it's stupid. Death is stupid.
I appreciate that someone, 6 years out, will admit that this is STILL in the back of their mind. Back? Hah, FRONT, where everything you do you have to look around it and push it out of the way and sometimes it's all we can see. Blah. Thank you to everyone who has given up the pretense of pretending this never happened, pretending that life goes back to normal. Oh, life goes on alright. But like it was before? No. Everything is the same and nothing is the same. How do you explain that? But everyone here knows what I mean.
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Runor - thank you for putting that so poetically, the driving metaphor. All of us are now living with some level of fear, and we've been through huge trauma.
I'm so glad I found this thread, to drop in and feel Not Alone with the uninvited guy in the back seat sending me anxiety vibes! Obviously, ANYTHING could "get" us, any time, but this particular enemy is such a sneaky one. Invisible to the naked eye, but deadly, arrrgh. I love that this community forum gives me daily hope and energy, on various threads.
Thanks to all of you, for sharing feelings and scares and tools and anguish and progress and realities of how you are moving through this.
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It is so helpful to know it's a sad yet normal part of all this- to have these thoughts and worries. I don't tell anyone in my life about how I feel. Well, my husband to a very limited degree. I fear they will think I'm over reacting, since I had early stage 1 and low risk of recurrence. So I keep it to myself. But it impacts my appetite for risk. I would normally take on more risk, whether it be financial or in my career, but now I find I'm basing some decisions on "what ifs". I don't want to make a decision now that I'll deeply regret if I get recurrence. I don't have a known gene mutation, but BC and recurrence is very high in my family. I'm doing well, and trying to not overthink everything but it's pretty hard to do sometimes!
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Cleokeep..yes! Yes! Yes! I have arrived at a place where I get through the day. Often quite happily. But the future! Now that's a tough one. People ask me "where do you see yourself 5 years from now?" and my answer is "Hopefully not dead." There are projects and undertakings I would embark on had I not been diagnosed. And like you, my recurrence risk seems fairly small. Yet... read the stats/ bios on this site and come to some conclusions of your own. I would love to borrow half a million dollars to build a house but then if I drop over half way through and leave Hub with the mess - he's not the designer, he's not the sub contractor, he's not the site overseer. That is what I do. Not him. So if I keel over in the midst of that, things are going to get real bad real fast.
If you explain this to someone they say, "We could all get hit by a bus tomorrow, you can't live your life based on What Ifs..." (at this point I picture myself kicking this person in the groin).
Likewise,should you charge ahead with a high risk undertaking knowing that your life is a bit more precarious than the average person? Well, it is and it isn't, this is a huge philosophical debate and I debate myself constantly. But imagine if you start building a house, sell the one you're in, all your stuff is in storage, you're renting a tent in some farmer's field to live while your house is built, you are overseeing the build and general contracting because your Hub is working a fulltime job and can't, and then, YOU DIE! And there's Hub, in debt, nowhere to live, belongings in storage, camped in a field, a half done house, a dead wife...this sounds like a country song. Then people would say, "Well what was Runor thinking?! She knew bloody well she'd had cancer, she knew it might come back yet she up and threw her family into turmoil and look at the mess they're in now. Way to be, Runor. You suck, you old, dead idiot. " THAT is the scenario that plays in my head when I think of doing something long term, high risk and expensive. THAT stops me dead in my tracks. The fear of acting irresponsibly. The fear of leaving a mess someone else has to clena up. The fear of leaving mayhem and hardship in my wake. That is not how I roll. So cancer has stopped me from rolling much at all. It has made the possibilities in my life much smaller.
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I’d really love to have every provider, every family member, every friend, read this thread. I think they lose touch with the reality we all face. You’ve put it all into words like I never could - I so appreciate this.
With this last brain Mets scare - it was only a few days from the “seizure” or whatever it was until the mri results, but in that time I had already made arrangements for a friend to help me clear out the house of all my junk, and I planned on going to the funeral home and taking care of the arrangements - so my husband wouldn’t have to deal with it all.
And I really don’t think of it (consciously)on a daily basis, but as soon as there’s any possibility, it all comes flooding back immediately.
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