Fear of Mets is RUINING my life
As you can see from my diagnosis, I could not be more of a high-risk patient in terms of chance of mets!
A part of me has actually accepted that I will likely die of BC, but what I cannot accept is that this could be soon, before age 35 or 40. (I am 32 now).
I am thoroughly paralyzed with fear, and it has gotten worse, not better, with time, because I kept learning more bad things about my case over the past several months since dx (found out I had BRCA1 mutation, then found out my tumors didn't respond to neoadjuvant chemo, then that they were larger than first expected and affected more nodes and skin, etc).
I am unable to work or enjoy anything or function because of my fear. I lie in bed for about 14-16 hours per day. I am wasting this precious time.
When I was a child, my parents consoled my fears (of the dark, of monsters…) by reassuring me they were irrational and not real. But my adult fear is completely realistic considering my prognosis. There is no hiding from the facts/stats.
I don't know how to continue like this. I see a therapist weekly, a psychiatrist monthly, I take an anti-depressant (Lexapro) AND Ativan. I go to meditation/yoga groups. I force myself to take walks. I have done everything to help myself. I will look into clinical trials once I adjust to the hormone blocking therapy that I begin in a couple of weeks.
Right now I am having pain on my right side (liver area). Oncologist says it is up to me if I want him to order a scan - I said no, I cannot bear the anxiety of that process. We took blood instead, results come back next week.
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Hi elise. Im so sorry you are going through this. I'm much older than you and stage one so I don't want to pretend I know how you feel. I just wanted you to know we are all here for you. Hopefully someone will come along that has similar stats. There are many women on this board that are stage 3 and doing well. Best of luck to you...
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Hi Elise,
I so feel for you and what you're going through. I was there almost 10 years ago (In my 30s) Family history (both my father's sister had it and my mother's sister) but did BRCA test and it came up negative. I had a huge lump both in my breast and armpit - in fact two in my breast with lots of lymph node involvement.
I had 6 lots chemo (3 x FEC and 3 x Taxotere), 15 sessions of radiotherapy with a bolus as it needed to go right down to the chest wall. I only got 7mm of clearance after my mastectomy. A year of Herceptin. I was on, "Watch" very regularly and am now on six month checks.
All I can say is that the fear was so hard and sounds like you're doing everything you can to deal with it. The hardest thing is nobody can tell you what's going to happen in the future, it's the unknown that's so hard. I also get you not wanting a scan. When I had my reconstruction they wanted me to do various scans first and I refused, so in the end I just had a CT scan and that was that. It was sort of a relief.
There is so much fear associated with the scans, but you do find that once you've done it you feel relieved. Pain on your right side could come from lots and lots of different things and most likely NOT associated with your liver. Any ache or pain (and yes I had what I thought was liver pain but wasn't) brings such fear and it's just awful.
See how you feel in a couple of weeks times and if the pain is still there, and then maybe decide that if it's gone then maybe it was more in your head than anything else. It's amazing how your brain can pay tricks on you and it's so horrible. Anyway sending you gentle hugs. RebzAmy
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It would appear that your fear of mets (and you are not all that vulnerable given er/pr+, triple negative is the high risk) is preventing you from enjoying the life that you have to live today. If you were to get metastases, how would that change your life from now? There are many, many women living with metastases like a chronic disease, I am one. I'm not sure how you are to deal with your obsession, perhaps you could talk to one of your therapists about changing your antidepressant, or increasing the dose. But giving up on life because you are afraid of death makes no sense.
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Realizing a problem is half-way to solving it. First of all, I am glad you are getting some professional help. Here are some things I can think of that you can do on your own that may also help: Exercise (which is a great natural mood enhancer and is the biggest non-medical thing you can do to REDUCE your chance of recurrence). Maybe try some group classes, which helps you be more accountable and the social interaction is good too. I, myself, love Zumba and other classes with music. I am glad you already do yoga. Shop; go buy a new wardrobe, get a new hairstyle/color, when you look good, you do feel better. Travel; go some places you've been wanting to see and do things you've been wanting to do. Commit; sign up for a class, join a choir, learn Chinese, volunteer, when you are busy doing/thinking of other things then there is not as much time to think about cancer. Schedule worry: decide how much time you will worry about this (one hour a day or whatever) and after that you have to go do something else. Relaxation techniques: I have quite a few Ocean Waves, soft music etc. CDs that I play, also a self hypnosis stress reduction CD that works remarkably well.
You do have bad statistics. But YOU are not a statistic. Your story is your own and there are always people who beat the odds, no matter how grim. Why shouldn't you be one of them?!!!! The thing I decided near the beginning of my experience that may also be something for you to consider: if I do all the medically suggested treatment, and adjust my lifestyle (exercise, keep a healthy weight, limit the alcohol etc.) then that is all I can do; and it is either going to come back or it isn't. If it doesn't come back, then I've wasted all that precious time worrying for nothing, and if it does, then all the more reason to really live NOW!
Best of luck. Along with advice, I'm sending along a hug!
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I am so sorry you are dealing with this. I won't offer what-to-dos since you have two therapists that am sure are much better at helping you navigate some of the thought process.
I will offer you this: first, you are not even ONE year out....give yourself permission to grieve losing a life you knew and being vaulted into this hell-hole that is cancer. Second, remember that as cive posted, mets can be a chronic and manageable condition. Finally, try to imagine that research is moving quicker now than it has in years before. Immuno type therapy is forging ahead, newer drugs, clinical trials, symposiums and genetic sharing across countries....all of this is new for us and it holds real promise.
I don't know the type of cancer my gyn (in WI) had, but she was 31, had 2 small children. I'm not sure they routinely tested for BRCA mutations back then because she is now 66, volunteering across the world with her gyn skills, sharing what she knows and living life. It would be such a shame to think she would have spent 30+ years "in limbo" waiting for that shoe to drop.
We all die. All of us will have our time, so worrying about how and when seems wasting what we are able to enjoy right this minute. I hope you can get there, but remember to allow yourself time to grieve and wallow and get to where you can accept this.
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I just wanted to chime in. Two friends of mine at work were diagnosed Stage 3 C. One is very young under 30 at dx she is 6 years out she was either triple negative or very weakly positive ER and PR. She is going great. Also another friend my age was dx in 1995 Stage 3 C but hormone positive. Both these gals had many many positive nodes and large tumors. My older friend had tons of tumors throughout both breasts. I think it is important to consider stage is becoming less of a factor in recurrence. At one time it seemed to mean more. You will read stage 1 thru stage 3 A is considered caught early.
My friends with BC, I have 4 at work, the only one with recurrence had 1 small less than 1 cm ILC tumor oncodx of 4 had a recurrence in her spine. The others all of which had grade 3 aggressive tumors have not reoccurred.
I wish you could talk with Minh she was in her 30s when she got the news with her frieghtening stage 3C but she is in her late 50s doing great. I think the reason my 2 friends had stage 3C is that they weren't getting mammograms because there were under 40 at the time of dx. Both are fine I believe you will be too.
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Nobody wants to get mets, also nobody wants to get in a car crash, but you shouldn't be living in fear of either one of those on a daily basis. You can't change what will or won't happen. Is your risk higher than average with Stage 3? Maybe a little in relative to the general population, but not enough for the level of anxiety you seem to have. I don't want to negate your terror, which I'm sure is real, and you do seem recognize you have a problem. Why fear something that you don't even know if it'll happen? Don't lose sight of what you have today for fear of what tomorrow may or may not bring. I happen to be Stage 4....six years and going strong. My fellow Stage 4 sisters and I know what it's like to live with fear, and many of us do it well, and we do it for a long time. I feel like you'll be ok once you get a handle on your anxiety.
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The best way I have found to get rid of recurrence fear is to be very, very busy. I have been loading up my schedule with work, with friends, with my kids. Even if I don't feel like it, I get up, I get out, I show up for stuff. I try to have commitments, people to meet for exercise, or lunch. It starts to work after awhile. You will find you will go hours without thinking about the fear. Always having something to look forward to helps me also, like a trip, or meeting up with someone I haven't seen in a long time, or a visit from friends, etc. and not too far out- something every month. I am being intentional about making these things happen. I have decided that if I do have a recurrence, the thing I will regret is the things I haven't done, so I am trying to fill my days as much as possible with those things and people I love (and cut out the stuff I don't.) I am a little bit doing the opposite of you- I am not going to a therapist, I am not spending a lot of time talking about my fear or trying to treat it, I am trying my best to just drown it out. Probably a therapist would call that denial- I'm fine with that. The more I do, the less I worry. On the flipside, the more I fret, the more I spiral on the fear and the more afraid I become. Even if I find myself starting to go down the hole of Dr Google I get up and go clean out a closet or something. Distraction really works for me. I sincerely hope things get better for you!
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you may also try another medication. I took paxil. Please do not let your age or stage when diagnosed dictate undo concern. You will be ok. Everyday tell yourself that. Every year that goes by without recurrence is increasing your odds.
I have stage 4 friends that are still NED many years later. Don't let the diagnosis tell the future.
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Hi Elise , I am over 2 years since diagnosis . I understand how you feel . It helped me to keep busy , meeting friends for coffee etc . I did google constantly trying to find long term survivors and anything I could about this wretched disease that takes away who we were before . The feeling that nobody understands is so frustrating I know . I wish I could help you . I have had symptoms of mets many times , pain in my hip , bad headaches , liver pain that was mild on and off for months which disappeared when my doc told me to lay off my raw diet for a while ,( I was eating tons of raw onions which I think caused the problem ! ) he said it was gerd ! Please try to exercise moderately for 30 mins a day or intense exercise 75 mins a week . Studies show that this increases survival by 40 percent !! Sending you lots of love and wellness x x x
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Me, too. Constant Fear. In my head, I have even said the same words that you wrote here, that the fear is "ruining my life." I had decided to say those exact words to my therapist when I next saw her, and then she was diagnosed with lymphoma and is currently in chemo. Can we say cancer sucks?
Anyway, some thoughts that I hope could be helpful (not all but maybe some): 1) obsessions (if they reach that level) do need a higher level of SSRI than typical anxiety and/or depression. 2) My therapist teaches mindfulness-based acceptance. If you can accept that the cancer is going to come back (which it actually might NOT, but that's not the point), then you don't have to struggle with the anxiety of it. The point, as one of the posters above says, is that the uncertainty is so hard and can, itself, be debilitating. So my therapist says acceptance works for some people. The other part of this is, as another poster says above, to identify what you want to do or would do if it had already come back. Then, you're doing exactly what you want. The problem is, as Paul Kalinithi writes in When Breath Becomes Air, most of us don't just figure that out and move forward. We're constantly having to figure it out. The struggle is very, very difficult. 3) Both my radiation oncologist and my surgeon "prescribed" "more projects" to deal with my anxiety as treatment ended for me in December. They suggested I take on new projects at work, volunteer more--essentially, distract myself. I would put this third piece of advice with the second one and suggest that you (and I) take on things that are meaningful *to us* as well as distracting.
I posted this over my desk to remind myself. Maybe it will resonate with you, too:
"Attempting to position yourself outside the circle [of life] isn't going to save you from anything. It isn't going to keep you from your grief or protect those you love when you're gone. It isn't going to extend your life or shorten it. You're here. So be here. You're okay with us for now." ---Cheryl Strayed.
Most of all, know that you are not alone.
Kelli
PS Just so you know: I'm terrible about taking my own advice. The reason I'm reading this board is because I am freaking out all the time about mets.
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Hey Elise, I have similar stats to you and I'm now 1.5 year out of dx. When I first finished active treatment (chemo/rads), I kind of had a mini breakdown..that is to say I thought about recurrence 24/7.
It sounds cliche but I decided to take a more proactive approach and take some control back in a difficult whirlwind time..I focused on putting me first, I started eating healthily and exercising which I think helped my mental (reducing stress) and physical health. I focused putting my time into the things I love and seeing friends/family.
I found as time went by, I noticed that I wasn't always thinking about recurrence. I was determined not to let it rule my life. In an odd way, I felt like I'd been given a second chance of life and I realised that I have to live it. I was tired of being a victim. I don't nearly think of recurrence as I did..sure from time to time I do, but I try to push that thought away. I haven't crossed that bridge and I don't intend too...life is for living. Ok a cancer dx isn't what I expected especially at 34 years old, but things happen and it's resilient what makes us stronger. Cancer isn't a death sentence anymore, there are plenty of stage 3ers and there's absolutely no reason why you can't too. Stay strong!
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I think most of us can relate......I was not in a good place when I was diagnosed. I had three young children that I feared would not remember me if I was unsuccessful with my treatment. The first two years were the toughest.....and I definitely would spin down a dark hole and my husband would have to pull me out of it. Cancer is scary......the internet does not help.....and some oncologists were not helpful either.
Two things helped me:
(1) I read a post early on where a woman was sure her cancer was going to come back by year 5. She was just sure.....so she put her life on hold waiting for the shoe to drop. As I read it.... I realized that could be me.....I had to get out of the funk or I would just waste five years where I was healthy and could spend time with my family........it was a wakeup call. Don't let cancer take any more from you than it already has.
(2) My sister would send me motivational quotes during treatment and one just spoke to me.....perhaps because I grew up in a military family and this was a quote from an admiral. It was from Admiral Stockdale who was a prisoner of war......
"I never lost faith in the end of the story,.......... "I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which in retrospect, I would not trade."
It sends the message that yes.....we are in a difficult situation...and we acknowledge it........but we will prevail.
The drugs are good......many many people do well.....and they are only getting better.
Jacqueline
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Thank you YATCOMW….once again in your special way you have been an encouragement to many. You always take the time to encourage, as only another BC sister who's been there can…. I love the quote and needed it today.
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Elise, its hard living with fear. I'm going to give you a piece of advice I often give to women who have just been diagnosed with mets.
Yes you may die of breast cancer (or not). But you aren't going to die of it this week, this month or this year. Start thinking short-term if that's what it takes.
For myself as a ER+ woman, when I was diagnosed with mets I decided that I wouldn't worry about dying until I had to move to chemo. When we visited the lawyer to re-do wills and the like he delicately asked how long I had. I told him I didn't know but that I would likely have at least one year's warning before death.
So -- can you decide that you won't worry about this until you are actually ARE diagnosed with mets? [For the other women here, yes I used that tense on purpose]. It's OK to be convinced you'll get mets if you can put off worrying about them until that time.
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I found comfort in a BCO stage 4 member who had liver mets, she is now 15 years NED.
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Elise,
May I ask - did you have other fears before you were diagnosed with breast cancer?
What coping strategies did you use before this diagnosis? ( you don't have to answer us just think back...)
Post chemo depression is common and may not entirely be related to your diagnosis.
Pajim message is very strong - underneath the " you will not die today, or this week or this year..." for ME at least there is a "enjoy every sandwich" 😊 - be thirsty for and of life and don't waste a drop of what is given to you - the words come from another bright and gutsy lady on the Stage 4 forum.
I have stuck this to themirror of my entrance hall
We are all afraid in some way Elise 😊
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Yesterday I was excited that it's my last chemo treatment. However, prior to my last treatment my MO said on my blood work my tumor marker has started to climb. Anything below 38 considered normal. Before my surgery I was at 42. After my surgery I was at 32. And before chemo It was down to 22. However this last bloodwork the day before to my last chemo it went up to 62.4 yikes. A little teary-eyed and scared. She told me nothing to be alarmed about yet. Did this ever happened to anyone? I had PET Scan/Bone Scans and MRI done in Feb. prior to my surgery and all came back negative of any other cancer besides the lump in my right breast.
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ladies, I wanted to thank you all for words of encouragement. I am having my last chemo next wednesday but I am already scared. I am more scared they misdiagnosed something and I will suddenly become a stage 4 with few months to live. My biggest fear is to leave my children. I dont know how to deal with it, even though my prognosis are good according to my MO and even if there was some cancer left in other nodes (my sentinel was removed with 3.5mm cancer in it-even though MRI didnt show anything) chemo and rads will take care of it. But then of course my stubborn mind is asking-well, what if they don’t take care of it?
Then of course, I think that I can die tomorrow in car accident and I dont obsess over that so why should I obsess over mets....
I really miss the time from before the dx-the “no care in the world” and being absolutely convinced that i have at least 50 years ahead of me.
Anyways, I am grateful for that forum-it allows me to vent and I feel I am not alone.
Thank you and have a fearless weekend
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I needed this thread today. Thanks for all of the words of encouragement ladies...they are invaluable!!
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One thing I found about crippling fear of recurrence is I had very little control over what I was thinking. I spent the first 2 months of my diagnosis talking to breast cancer friends almost every night. I would listen to them and think they made it through and they are ok. I will be too. One day I woke up and didn't think about the cancer for hours. It took time for me but every time I have a scan or mammogram I start thinking about recurrence. Then the relief after hearing good news it goes to the back of my mind until the next time.
Your risk of recurrence never goes away but statistical does go down. Remember there are people walking around that never have had cancer and they have a risk as high as 1 in 8. Also there are stage 4 BC survivors out there with decades of remission. 95% of the things we worry might happen never do.
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Les123, it isn't uncommon for tumor markers to fluctuate like that. It is the trend that is important don't be alarmed by 62.4, to put it in perspective my SIL tumor markers shot up into the 1000s and stayed there. She didn't have metastasis of breast cancer but a new primary uterine cancer.
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I was dx in December 2019. It’s been roughly six months since surgery. I’ve finished radiation as well as on hormone therapy now. I realized you got breast cancer many many years ago and I just wanted to see how you were doing? I too fear reoccurrence every minute of every day and it is destroying my life. It seems it’s been almost 20 years for you! Your story gives me hope
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Mama Moose - this thread hasn't been active for over 2 years so the previous posters may have moved on. There are lots of thread that are celebrating 5 years, 10 years, 15 years. etc. Personally I did have a recurrence 2 years after my mastectomy, but now even that is 6 years in the past. We all have to grow into our "new normal", but fear every day is debilitating. Maybe your should talk to your doc about some kind of anxiety meds or find a good counselor.
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