Stage 3c How do I keep from obsessing about recurrence
Hi all,
At the age of 38 with no family history, I was diagnosed with a huge ER/PR+ HER2- tumor in Feb 2018. I had all the treatments: 5 mo. AC-T chemo, mastectomy & axillary node removal (10 of 25 had cancer post chemo), oopherectomy 3 weeks post mastectomy, then 28 sessions of rads. I'm on a daily aromatase inhibitor (exemestene). Basically I'm done with active treatment as I turned down a Phase 3 clinical trial of Ibrance for Stage 3 because I felt it was too risky and I wanted to move on with my life.
I managed to get through all of this with a relatively positive attitude but now that active treatment is over & my first CT scan post-treatment isn't until mid-January, I find myself OBSESSING over recurrence. Btw, I exercise regularly & eat really well (more sweets than I should bit otherwise super healthy).
What have other Stage 3, especially Stage 3c, survivors found effective to help you cope when your brain starts to obsess about recurrence?
Thanks so much and be well! ❤ 🌈 🌞
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Orlando74, my heart goes out to you. I've been there--scared, feeling like I've been cut adrift, worried about the future. Do I make plans? Retire? Give up dreams? Work on a funeral service for myself?
No one knows what the future holds. But I do know that there are lots and lots of us who had very serious (Stage 3) diagnoses, and are many years out. Statistically, your chances of cancer NOT coming back are better than than it recurring. A friend who had already finished treatment told me she imagined a "delete button" in her head. When her thoughts took her to that dark place, she hit the mental delete button.
You haven't been out of treatment very long, and the "elephant in the room" is still stomping around your house, pooping on the rug, and breaking furniture. It takes a while, but the elephant shrinks into a tiny mouse that lives in the wall and squeaks from time to time. When I was first diagnosed, I had "cancer radio" playing in my head 24/7. Now, I hardly ever think about cancer. It just takes time.
Right now, though, I think you should find a therapist or counselor that works with people who have had cancer, and talk about how you're feeling. The fact that EVERYONE fears recurrence doesn't change the fact that it's wrecking your peace.
I promise you, there are better days ahead.
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Hi orlando74, I don’t have an answer for you but wanted to let you know you’re not alone in this. I am behind you yet — just finished AC and moving on to taxol — but our stats are similar. It was a total surprise to be diagnosed stage 3C at 42 in July this year. I have read lots of posts about people finding it harder to cope post-treatment than while they are going through it. It’s hard for me to imagine from here, but it makes sense that once you are no longer in active treatment and seeing doctors regularly you would feel cut adrift.
On a side note, I wonder if you could share more about your decision not to do the clinical trial? I am considering a very similar one (MonarchE) and am agonising over whether it is worth it to try to prevent recurrence or if it will be better to take a break from being a patient and try to get my life back.
Sending lots of support your way.
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Thanks so much for your heartfelt & kind words. They really help! Much love & gratitude to you!
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beeline, I meditate on a regular basis which helps me really get in touch with what my highest self/true self wants. That's the part of me that insisted something wasn't right with my breast when I was misdiagnosed as just having "dense breast tissue," 3 mo. before my Stage 3 diagnosis. Thank God I listened to that voice!
I feel confident that by having my ovaries removed & immediately going on an AI I'm doing my best to live a normalish life post-cancer. The side effects from the Ibrance trial included low white blood cell counts & potentially death. I'd have had to live like that continuously for 2 years. My MO showed me a well-researched study that basically said the 8-year disease free survival rate for women with Stage 3 hormone +, Her2- premenopausal who do ovarian suppression & take an AI is about 80%. Not as high as I'd like, but that's why I avoid all alcohol, eat really well, & have upped my exercise as that's been shown to matter A LOT with regard to reducing risk of recurrence.
The trial felt like I would be continuing to live in fear and be subjecting my body to yet another dangerous drug, perhaps unnecessarily. I completely respect & honor the decisions of the women who chose to enter the trial. That just wasn't what was right for me.
I hope me sharing a bit about how I came to that decision is helpful to you! Best wishes as you move on to the next part of your treatment!
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I think the fact that you’ve had comprehensive treatment should be taken into account when you turn your mind to recurrence chances. Scanxiety is a thing, but assuming the worst is not the way to go. Summon your prior positivity and keep busy over the holiday season. Good luck with your scans.
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Hi Orlando,
I understand, as a stage IIIC er, the fear of recurrence was pretty prevalent in my early days. Its extremely common. Unfortunately, Scanxiety is something we all experience.
To manage my fear , I took comfort in the fact that our protocol is quite aggressive which is ultimately a good thing in the long run. I looked out what I could control, modified my diet, and left a very high stress job, and put my needs first. I did find there are many of us Stage III er out there living long healthy lives.
Know this fear does dissipate with time. You will move on albeit, gradually.
My diagnosis was 13.5 years ago. I am healthy, and the BC experience is way way back in my memory bank.
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Oh my I so get it. I was one node away from Stage 3C and my sister was Stage 3C. I am now 7 years out - my sister is 3 years out. We were in our 50s at diagnosis. I so feel for you younger women.
I tell people it is getting used to living with a lion in the living room. He is always there like an unwanted guest. Some days you will be on the ledge with a pain in your back, or your stomach or your foot. I call it "cancer of the week" to laugh about it, because otherwise you have no control over it. The first thing I ask myself is "What did you do to cause this pain in my back?" Usually after some calmed down thinking, you realize you moved the living room furniture or pulled a muscle.
The fears are very real. I can tell you it gets better year after year, but it is always there. The lion tames down with every checkup and every bit of good news. But it is a long process that eventually becomes a part of your life. The lion becomes a pet that you still don't like, but you learn to live with it.
Sending all my best wishes!
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Hi Orlando- you are just a little ahead of me on this journey, but fear hit me hard and early. Lexapro and therapy helped pull me out of the dark spirals that I found myself in. I was 41 when diagnosed and our treatment and tumor type are a close match. I have a clinical dx of 3A, but my oncologist has made it clear that it could have been worse.
Your oncologist sounds more hopeful than mine. I’d love to read the report he shared with you if you have a link? My ovaries are being suppressed right now and AIs will come soon.
Love, happiness and wellbeing back to you and all of us survivors.
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Thank you everyone for your wise words, and thank you orlando74 for sharing your decision-making around the clinical trial. I am trying to understand the putative benefit and weigh it against possible loss of QOL. The SE’s of Verzenio seem less serious but if uncontrollable diahrrea and fatigue mean I’m not able to exercise, am I losing a known benefit in hopes of gaining an unknown one? I don’t know, but I am trying to start a meditation practice in hopes that will guide me.
Best of luck to you and thanks again! x.
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Hi Magnolia-Mom,
My oncologist is a she: Dr. Ruth O'Regan who is considered an expert in treating premenopausal BC. :-)
Regarding the research she cited, it was posted on the ASCO Post on June 5. There's a link in that post to the full study published in the New England Journal of Medicine. Unfortunately we're not allowed to post links in this forum.
Best wishes to you, and all who have posted here. Really helps me feel less isolated. :-)
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Is this the study? I think you just have to have a certain number of posts before you can parse links in
https://www.nejm.org/doi/full/10.1056/NEJMoa1803164
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Yes, that's the one! :-)
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Thanks Orlando and Beeline! I wish I could read the full study. I'm having a hard time getting signed in for free access.
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Hello - 3c or 4? after a recurrence in Axillary coming up on 3 years (recurrence was just about 2 1/2 yrs out.).
Take your attivan and ambien as needed and get back to planning vacations, family events and drop as much stress as you can! (it's not a health thing to me as much as a quality of life - it's too short to take so much BS over a lousy job - also stop wasting time and energy on regrets, lost loves and lost causes. You have a LOT of good things coming your way. Like hopefully ...HAIR again
warm sunny days when you won't think about breast cancer for hours and hours...nights you put your feet up with a glass of wine, tea, insert your favorite beverage and will be truly thankful for everything you have and everything you don't want that you don't have. Takes about 2 yrs to go on the back burner but DO and I mean DO get your ultrasounds every 3 - 6 months both axilla side. US are low cost, non-evasive and get approved over the littlest complaints. Caught mine that way and as bad a recurrence was, it was local and other than zometa and 4 check ups a year...that's been my life since I had the ALND and full hysterectomy. Life is good again. May be shorter, may be not. I've been to a lot of other funerals in the last 6, almost 7 years. Non were mine!0 -
Hi ladies
Thanks for starting this thread Orlando74
I'm coming up to my 2 year anniversary in ten days and while I feel pretty good physically, mentally I'm finding it challenging. At times I feel quite anxious, although my head says "stay positive", it's hard sometimes. I try and keep busy with work, kids, friends, etc, and I do feel blessed and loved, so I'm very lucky, but it's quite overwhelming knowing how close I was to a much worse diagnosis. I met a wonderful BC sister in May when I was going for my annual scans. We helped each other get through the day and she sadly lost her battle in October. I think that's really hit me hard. She was like me, two young kids and so much of life ahead of her. Life is so unfair.
I hope you are all doing well and are looking forward to Christmas. Lots of love to you all. Xx
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I wish I had something to add but those above have shared what I would have shared. And as already mentioned...it does get easier with time but never totally goes away. I am stage IIIC and did everything you have done. I had an 8cm tumor and 17 nodes......such a daunting diagnosis and very scary. I so get it.
As we come upon Christmas I remember my first Christmas after diagnosis so clearly.....with young children I kept thinking how is my husband going to do Christmas without me. This year will be my 15th Christmas since then!!!!!!
Hang tough......surround yourself with positive people.....before you know it the years will rack up and things will get a whole lot easier than they are now;)
Jacqueline
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Thanks Jacqueline
I love your posts, they give such hope to so many, and hope keeps us all going. Like you, my family is the centre of my world, and Christmas is a time to give thanks.
Much love. Keryn
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I understand and feel exactly as you do. I’m or was, who knows what to say stage 3C with 17 positive nodes.Also did ACT, mastectomy, radiation and am continuing with letrozole daily, Herceptin and Perjeta every 3 weeks through IV. I have both Her - and Her +
Wednesday inc told me I was NED. Had no scans or tests so how can she say that to me ? When I questioned her and asked for scans to be done to prove her NED she said nine were needed because they are sure I’m NED. Am I wrong ?
In addition she wants to stop Herceptin and start me on Kadcyla which is a mix of Herceptin and chemo to make sure it doesn’t recur.
My Mom was with me and was so happy to hear NED as was my family. But me nah I’m constantly obsessed with the thought that it’s still there somewhere. I’d feel much better if I had a PT scan to confirm.
She says it’s not necessary and that at Sloan this is their way of doing things.Top notch hospital, who am I to argue with them ? No sorry I want scientific proof.
Did you guys have scans to prove NED ?
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Your not alone!
I feel the same however I find peace in focusing on the things I do have control over. Meditating, praying, being present in life and enjoying right now.
Sending encouragement to you.
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Just wanted to report that I had a CT scan of abdomen/chest & pelvis 3 mo. post completion of radiation & I was found to be NED. So I'm focusing on that for now & hoping to keep it that way for as long as I have any say in the matter! Thanks for all your support.
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sbelizabeth, I do and probably most of us live BC all day every day. I have found a few things that work for me. Staying really busy, and something else that requires some practice, called "compartmentalizing" . I have a "room" in my head that holds all the cancer worries, and make a plan on how often you want to visit that room.
But I feel we all live from scan result to scan result. That should probably go to that room too.
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I think you can take a counter-intuitive approach, and turn your thinking the other way, and embrace what you fear. Really think through how your life would look if you were to get a bad recurrence, and die earlier than you want-- and then plan to do wonderful things RIGHT NOW in case that should happen. Because then you have lived the best short life you can. What I am trying to say, pace yourself for a shorter life span and look at a longer lifespan as a bonus, and you might have less fear that way.
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I just completed one year of herceptin and perjeta. My doctor is not ordering any scans. It will be strictly labs every 3 months and physical assessments. He feels strongly I do not need additional medications nor do I need to have scans every three to four months. I hope the hell is right.
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Orlando,
I’m so sorry you are here, but I can give you hope. I wasn’t much older than you, 39 turning 40, and I’m 52 now! Reading your post brings it all back, and makes me feel incredibly grateful for every day! I feel alive, healthy and optimistic, and I wish the same for us all. Listen to me: No one knows what tomorrow holds! Nobody. The way you feel right now? We’ve all been there, and we often revisit those feelings. This isn’t an easy journey, and it’s hard to hear that you have cancer at 38. Be easy on yourself, rest when you can, and surround yourself with people and things that bring you joy.
Wishing you healing, peace, joy and love.
Bobbie
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Thanks Bobbie. Love the message of hope! May the years keep piling up for you!
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orlando74 GreatNews about your scan. Definite blessing.
Yes this fear of recurrence just is a horrible thing.
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Thank you! I'm feeling very hopeful these days! I'm still exhausted from my 10 mo. of treatment but imagine that will go away in time. At least I hope so! Best wishes to you and to all of us sisters!
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Hi Orlando74. I came to the boards (again) today because I am also stage 3c, lost, confused, scared, terrified, worried, crying all the time, and feeling so alone. Add to that that my treatments have ended, my hair has grown back, and I look normal with clothes on, so everyone expects me to be "fine" when I am anything but. I was looking for something to reassure me before I posted an "I need help" post, and found this thread. I'm the same age as you and also at UWH. I had a horrible experience with a different MO, but have heard very good things about your doc. And like you I had a "clean" mammo & US 03/2017, knew that day that something was wrong, and lo and behold 10 months later found out I had stage 3c BC. If you want to talk, feel free to PM me. Sending hugs!! I don't feel quite so alone anymore
ETA: We must be twins......we were diagnosed 2 weeks apart!!
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I am only 6 weeks out from a bad mammogram. I had a right breast removal and I am healing from that. I will be getting a port on April 29 and beginning chemo and radiation after that. I am Stage 3C also and scared to death.. I am frightened of chemo and I wonder if the treatment might kill me before the cancer does. I am absolutely terrified of reoccurance that I keep being reminded is high in my case. My oncologist told me I have a 60% of no reoccurance but I am on 24/7 blast that I will never get through it and will spend the rest of my life in treatment. Can anyone help me to understand how to get past this... If my life is to be short from now I want to enjoy what I have and not be sick all the time worrying about the future. How do you guys keep it together??
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I just wrote a really long reply to you mpv459 & then the system on my phone messed up & I lost the whole thing! I'll type you a response on my computer tomorrow. For now, know you're not alone & if you can find yourself a cancer support group ASAP!
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