Emotional aftermath following breast cancer treatment

Posted by rhongirl @rhongirl, Aug 23, 2022

While I was diagnosed in Dec. 2019, chemo, cancer surgery, and four more surgeries took place over the next 2 1/2 years (one of which was a second cancer surgery). I'm 6 weeks out from my last surgery, feeling somewhat normal physically, but wading through the emotional aftermath. "What just happened to me?" I told my husband that I've spent the past 2 1/2 years trying to stay alive - and I'm exhausted. Exaggerated emotions with up-and-down mood swings. . . I find myself yearning for that sense of emotional equilibrium I had before this all began. I'm doing my best to give myself time for this part of the healing - but I find myself weary. Family and friends look at me like I'm fine now, and the trauma has passed - but the truth is, I am not fine on the inside. It's as if my body is trying to reboot emotionally, and its short-circuiting a bit. I am so goal-oriented. . . if I just had that "magic" date of when everything would be normal again, I could focus on that; but it doesn't work that way. I have to be patient with this portion of the healing - and I'm finding that hard. What are others' experiences with this? How long does it take for your emotions to settle from the trauma of breast cancer?

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@bpknitter53

@rom828 - I thought the hard part was the treatments - boy was I wrong. Sometimes I feel fearful - and sometimes I can't even express what I'm fearful of. Other times everything my husband does annoys me and I wonder I have enough to worry about - why do I put up with the stuff that he does that annoys me. I'm extremely fortunate - I really did breeze through my chemo, surgery (bilateral - no reconstruction) and radiation - those had a fixed duration. This "survivorship" doesn't have an fixed duration. I'm only 1 year post treatment. I'm TNBC & BRCA2+ and my recurrence is highest the first 5 years post treatment. So am I going to be fearful for the next 4 years until I get past my 5 year milestone? I sure hope not - the stress and anxiety will do me no good. I have started doing some yoga and mediation and I hope that helps.

There are many times people ask how are you doing and I tell them "I'm fine"; but the opposite is true - how can you explain to someone the anxiety and worry about "am I doing everything I can to suppress a recurrence - will anything I do make any difference?" There is nothing they can say or do - and they just won't even understand the question. This site has been a safe place for me to vent and learn what others are doing to help make "survivorship" less stressful. Thank you for letting me vent.

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@bpknitter53 "this 'survivorship' doesn't have a fixed duration." So very true. It doesn't. People genuinely care. . . .at least the ones I know do - but they don't know how to identify with me, being a cancer survivor. I probably let my "it'll get better soon" hope last too long before I reached out to a psychologist for cognitive behavioral therapy. I have a master's in therapy and counseling, myself, so I understand this stuff . . . but I kept thinking I would have the gumption to get over it. Instead, the heaviness my heart can feel is like a familiar friend, though unwanted, when it comes to visit a little while. And I just got used to that feeling. Our brains record trauma in certain ways, and sometimes those memories get stuck. I describe it to my husband as a wheel that has a cog stuck in it. . . the wheel continues to try to keep turning, but it hitches in one spot. That's how this part of the healing can feel to me. I get stuck. Think of a grinding gear. . . sorta like that. My provider and I are working on using the flash technique and EMDR to access those thoughts that are so deeply tucked away, and recode them a bit, so my memory wraps those harder things with something good. Think of taking a pill that has a bitter taste. . . did your mother ever wrap it in something? I chuckle just a bit when I think of that word picture. . my memories need something yummy around the pill. Though I'm having some early success with that, there is still some more to go. I think what's important is that we realize this emotional part takes time - and to be patient with ourselves until we heal more fully. I, too, think about how the lingering emotional stress affects my physical body, and even that can cause stress. The point being - just give myself time. I'm already doing what I can in terms of going in and accessing those harder memories. . . now, just welcome the time, and let it do its job. Nope, there is no "fixed duration". How much easier it might be for us to quantify the number of days if we just had an "end" date. But we press on. With help from others. I am four years out from cancer surgery next month. Just. keep. going. :).

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I have to say the other day I vented - it was a bad day; but I'm happy to say today is much better. Went out to meet my knitting group and talked about the other people's ailments (knees, back, thyroid issues) that they are working through - but everything appears to be moving very slowly for them. Once I was diagnosed - plan put into place and I started treatment within a couple months - my choice to delay until after the holidays. I need to make a concerted effort to find things to stay involved in, to keep my mind occupied. I do have a list of knitting things I want to learn so that's a plus. But thank you to everyone that sent hugs - today is a much better day.

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@sharon35981

Diagnosed in February 2021. (Stage1B) Tried Verzenio, and I could only stand it for four months before I would wake up in the middle of the night suffocating. I’m on Anastrozole. Dr. said he wants me to take it for ten. I told him I wouldn’t live that long. I have had two spinal fractures and then a rib fracture getting a breast MRI. I refuse to get any more mammograms. I’ve threatened to stop my AI several times. I get the come-to-Jesus lecture. I grieve for my life the way it was before BC. I get a Signatera test every three months to check for cancer DNA in my blood. So far three negative test results. Wouldn’t it be wonderful to be done with even thinking about the possibility of BC recurrence.

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I was diagnosed at Stage 3 May 2019 and did the surgery, chemo, radiation route. I'm on Letrozole (switched from Anastrozole), but only plan on doing 5 years (oncologist onboard). I take Prolia because of Osteopenia + Letrozole. At appointment next month I plan to ask to switch from Prolia and get tentative end date to wind down maintenance(?) treatment of drugs and check-ups and what happens from there. So, I guess I'm questioning why 10 years on Anastrozole? Do you like your oncologist? In 5 years I'm on oncologist #4 (1 moved across the country). I totally respect everyone's decisions because they know there bodies best, but I do fault myself for not catching my cancer sooner. I had 2 clean mammos, but had a snarky technician who made me feel like a cow with a tag in her ear, so I didn't go back rationalizing that there was no family history. Bad move as I found out the hard way 7 years later. So I will continue annual mammograms. I admire the strength you show, but maybe encourage you to maybe reconsider on the mammogram, and decide if you're happy with your oncologist. Whatever you decide, we've got your back!

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Oh wow, I truely understand everything you are saying. I am back to feeling alone because I'm the only one worrying about reccurence and googling every symptom I feel. I too tell most people I'm ok, yet I'm not myself. I do sometimes tell my husband when I'm exhausted cause I don't cook or go to bed early. He is supportive but I do wish he helped me more around the house. I use to love puttering but I don't anymore. I also have lost desire to work. So not like me. I feel so different now and I can't explain it. Sometimes I even wish I would get the reccurence now to get it over with. How sick is that?? I feel a mess, but yet " I'm good".

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@jgallagher04921

Yes!!! And let's add on the fear of reccurence. I'm 1 year out of diagnosis. BC still consumes my thoughts. I feel so different than I did before I got it. I tell people I'm doing good, but inside my head is another story.

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@rom828 - I thought the hard part was the treatments - boy was I wrong. Sometimes I feel fearful - and sometimes I can't even express what I'm fearful of. Other times everything my husband does annoys me and I wonder I have enough to worry about - why do I put up with the stuff that he does that annoys me. I'm extremely fortunate - I really did breeze through my chemo, surgery (bilateral - no reconstruction) and radiation - those had a fixed duration. This "survivorship" doesn't have an fixed duration. I'm only 1 year post treatment. I'm TNBC & BRCA2+ and my recurrence is highest the first 5 years post treatment. So am I going to be fearful for the next 4 years until I get past my 5 year milestone? I sure hope not - the stress and anxiety will do me no good. I have started doing some yoga and mediation and I hope that helps.

There are many times people ask how are you doing and I tell them "I'm fine"; but the opposite is true - how can you explain to someone the anxiety and worry about "am I doing everything I can to suppress a recurrence - will anything I do make any difference?" There is nothing they can say or do - and they just won't even understand the question. This site has been a safe place for me to vent and learn what others are doing to help make "survivorship" less stressful. Thank you for letting me vent.

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@swallis

Is it strange that I feel like the double mastectomies, reconstruction and radiation were “easier” than living with the daily letrozole and monthly lupron? I felt like with surgery and recovery I was actively fighting something. Now I feel like accepting this new life of feeling tired and having bone joint pain at the young age of 50 is more difficult than the the pains of breast surgery and abdominal surgery. Anyone out there feel the same?

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Yes!!! And let's add on the fear of reccurence. I'm 1 year out of diagnosis. BC still consumes my thoughts. I feel so different than I did before I got it. I tell people I'm doing good, but inside my head is another story.

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@swallis

Is it strange that I feel like the double mastectomies, reconstruction and radiation were “easier” than living with the daily letrozole and monthly lupron? I felt like with surgery and recovery I was actively fighting something. Now I feel like accepting this new life of feeling tired and having bone joint pain at the young age of 50 is more difficult than the the pains of breast surgery and abdominal surgery. Anyone out there feel the same?

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YES! I went through lumpectomy, 4 rounds of chemo, 19 radiation session, breast reduction surgery and lived with the illusion that that would be it. Now I am close to finish the second year of Anastrosole and decided that after two injection of Prolia I kind of had it. I will see my oncologist end of the month to discuss the Prolia as I have server pain in joints and back and hardly could walk the last 5 month. The second injection was worse than the first one. I totally feel you, sister - it is now accepting the new you, but I am over accepting the constant pain and tiredness. I mostly worked during chemo and radiation, but now take here and there a day off work just to sleep. A lot of exercises and positive self talk. Keep in touch.

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Is it strange that I feel like the double mastectomies, reconstruction and radiation were “easier” than living with the daily letrozole and monthly lupron? I felt like with surgery and recovery I was actively fighting something. Now I feel like accepting this new life of feeling tired and having bone joint pain at the young age of 50 is more difficult than the the pains of breast surgery and abdominal surgery. Anyone out there feel the same?

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Thankful for this group and you all sharing your experiences. This is my support group! As I don't have an in person one nearby, my hospital is 90 minutes away.
I totally relate to this post and the trauma of this disease. Did not see this coming at all. No friends with BC no idea how to move forward etc. no family except my supportive husband.
Since 2010 life has been tumultuous.
Learning to pretend to be ok is my greatest skill.
But having the freedom and support to speak freely about this experience to those who understand is so therapeutic.
Sending you all healing thoughts and yes, take it a day at a time.

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Here is the website for EMDR. Go to the menu and click on “find a clinician” to find someone near you. Some of the clinicians are doing it via telehealth as well.
https://www.emdr.com/

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