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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@rhongirl

I began this post almost two years ago, because I felt like a little truth-telling would be good for me. People around me were acting like life was moving on (and on one hand, I was so glad for not being thought of as the woman with breast cancer), and yet I was still feeling so many emotions on the inside. I wanted my emotional equilibrium back (now, wondering what that ever looked like in the first place?), and I wasn't sure if it would ever return.

I am just over four years cancer free from TNBC. While my body looks normal on the outside, I am left with being physically "high maintenance" as my adult children call it. I can't take a lot of medications and I react to almost everything. We call me the "canary" in the mine. . .you know, when miners used to take a canary into the mines to make sure it was safe for them to be there (or to get out when the canary died)? The light-heartedness can help me adjust to my new normal, but then, at times, I can get a little weary of being the canary.

I've learned there are women who more seemingly move through this aftermath of breast cancer, and there are those who feel like they just do not recover. The jury is still out for me. For the most part, I have reentered my life, adjusted to the new normal, and dive in. I have fourteen grandchildren (almost fifteen), own my own business, and have a wonderful husband. I'm guessing, no one would ever know I still struggle emotionally from looking at me from the outside. Thing is, though, that my emotional topsy-turvy has me reacting to things differently than before. and I yearn for more stability in those emotions. I've seen a wonderful Christian psychologist a handful of times, but I left the office before my last scheduled appointment began. . . I just didn't want to talk about it anymore. I leveled with my medical provider about being down for the past two years, and she gave me a pep talk to exercise. . "It's summer!" and then walked off and waved saying (cheerfully, I might add), "Have a good day!" Um. . . let's just forget I had that experience. . . it's almost laughable, in fact, it is. Oh good grief. I have a master's in therapy and counseling. . . . I told myself that my provider did not and moved on.

There are times I grieve my old self - both physically and emotionally. . . my natural breasts are gone, along with all the sensation. Numbness replaced all that. My uterus and the remaining parts are all gone, too, due to a second cancer diagnosis after TNBC. Things are not the same as before, but I tell myself it's okay. There are just some days I don't fully receive that truth. And to that point of my provider with "go exercise! :D!" - it's not a lack of motivation, but it's deep aching on the inside that can sometimes stifle that highly driven woman I used to be. The new woman on the inside is tired, often. That can be hard to explain to another person. . . and then, the road is primed for guilt, shame, and sadness to follow because I find myself overweight and out of shape. But the good news is that I continue to TRY.

Our journeys are so individual . . . there is no real "right" or "wrong" way to do them. I think one of the best ways to help myself continue to learn how to walk this new journey is to give myself grace and time. Invest in the now. Give myself permission to have those times when things don't go as well as I'd hoped, or I didn't respond in the way I wanted to. Realize my emotional buttons are still a little more pronounced, and it doesn't take a lot to push them. Just BE OKAY, and let that be enough. I believe with my whole heart that God makes things beautiful in His timing . . . and daily, I learn to look to practice thankfulness and pray for my heart to heal from the trauma I experienced. And with time, I think it has. . .no, I know it has, and it continues to. Take a deep breath in and out. And then let God take the rest of it. I want my life to honor Him, and I want to honor those around me. Sometimes, that looks a little haphazard, I know, but if I want to be honest, things looked a little haphazard before BC. It's just now I understand more fully the value of this life and wanting to get it "right" more often than not. In the end, it is just about living life fully, and being okay in that fullness - whatever it now looks like.

My heart walks with all of you who have experienced this breast cancer journey. I'm trusting God to make something beautiful out of it for all of us. hugs 'n blessings to you all.

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Thank you for sharing. You are not alone in these feelings.

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@sequoia

@tonysmom hang on there. I do get frustrated with the medical world. I personally think that a person like on your case/dituation, should be on a fast track to get the tests done. 2 1/2 months is beyond frustrating. I’m so sorry that you are going thru this. What time between tests have occurred? Hang in and Blessings going your way. 🙏🏼

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abnormal mammo 4/29 did,nt get next mammo 5/16.biopsy pretty quick,but a month before I could get a MRI and before I met the surgeon.She was.nt available.Maybe vacation.Probably another month before surgery.Too late to find another doc now. So technically from 5/16.I'm a mess.

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@tonysmom

It's been 10 weeks on a journey i thought would be cut and dry.BOY! was I mistaken. Biopsy,lump and lymph node.O.K. get it out! no,Need am MRI to see if there was anything else.Found another lesion.Now I have to have another biopsy.Bone scan coming up.Hope they don't find anything else. So far all organs are good,but who knows what they will find when go in there .So 2 and a half months and still unsure about what is going on and no surgery scheduled.I hate my new life with cancer!

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@tonysmom hang on there. I do get frustrated with the medical world. I personally think that a person like on your case/dituation, should be on a fast track to get the tests done. 2 1/2 months is beyond frustrating. I’m so sorry that you are going thru this. What time between tests have occurred? Hang in and Blessings going your way. 🙏🏼

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@val97

Early in my BC fight, I was completely stressed out. I am a control freak by nature, and nothing about breast cancer felt like it was in my control. My fight/flight response was in overdrive. I didn't know how to turn it off, and maybe during that time it needed to be running on full-throttle to get me through it.

But it continued on after my last surgery when things were supposed to be behind me. I felt depressed, perhaps experiencing the loss of my old, intact self. People found it difficult to be around me, and it made me angry because I felt like they should understand what I was going through - now I realize they don't and probably never will unless they go through it themselves. My fuse was very short. I yelled at people, cried, withdrew. I obsessed about understanding what I need to eat, drink, do, not do - looking for what I did wrong - scouring medical journals, articles and even this group for answers. I worked briefly with a therapist and started journaling. Then one day recently it hit me. I'm wasting a lot of time and energy on things I can't control and can't change. I need to focus on what I can.

I have decided to live. Making a concerted effort to move forward and stop looking back. Do the best I can to be healthy and then [try to] stop worrying about everything else. Take care of me instead of everyone around me. Do things that bring me joy. Practice saying no. Control what I can control and let the rest go.

I am little overweight and need to strength train, so I joined an over 50 exercise group on Facebook and started exercising because that always brings me back to center. Started mediating and trying to focus on gratitude. Working on eating a healthy diet (but not stress about an indulgence here or there), drinking more water, and getting better sleep. Communicating what I need. Finding ways to manage my stress level and emotional responses to triggering events. (Walks in nature help with that.) Joining this group as been a blessing because I no longer feel like I'm alone in these feelings, and that has been a game changer for me.

I appreciate all of you and hold you all in my heart. Be well. Take care of you.

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@val97 congratulations- you’ve got yourself together! I commend you for taking the bull by the horns and getting your emotions and attitude together. Staying positive is key to good health and recovery. Keep On Keeping On ! Stay strong & God Bless you. Your post will help many - I believe.

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It's been 10 weeks on a journey i thought would be cut and dry.BOY! was I mistaken. Biopsy,lump and lymph node.O.K. get it out! no,Need am MRI to see if there was anything else.Found another lesion.Now I have to have another biopsy.Bone scan coming up.Hope they don't find anything else. So far all organs are good,but who knows what they will find when go in there .So 2 and a half months and still unsure about what is going on and no surgery scheduled.I hate my new life with cancer!

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@deb23

It is hard. No one but the people I "meet" here understand how hard this is, emotionally. I am 1.5 yrs past surgery, 1 yr since last treatment, 1 yr on anastrozole. Before bc, I was a stable, happy-go-lucky, non-worrier, optimistic, detailed and organized person. Now I am sensitive to everything, major worrier, emotions up and down depending on the day, can't focus or organize anything, forget everything, and pessimistic 50% of the time. I hate it all!! I wonder if the anastrozole causes any of this? Or is it all the bc experience and aftermath and uncertainty of my future? Whatever it is, it is all new to me and difficult to accept my new "personality". My husband, kids, friends, family ... all seem to have put it behind them, and don't even ask how I am anymore, just get a strange look on their face when I do something that "isn't like me" (overreact, forget something, etc). It is a very difficult and completely overwhelming experience.

I appreciate everyone here and the things that are shared. We can all help each other realize and understand that we are not alone, and we are not "crazy" for these new and foreign feelings. Stay strong, and take good care.

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I could not take the AI’s one made my body ache so bad I could barely get up and move I had to have help the pain was horrible. The second one affected me mentally, I was suicidal. The on going plan is follow with oncologist every three months and do the Signatara tumor testing every quarter. I still have a lot of fatigue but I am hoping that gets resolved since I had my last breast reconstruction. My oncologist put me on Ritalin which helps with the fatigue and the chemo fog. The chem fog was so bad sometimes simple addition was a problem. I feel like I am starting to get past some of this now I just have to make myself get back out of the house and establish relationships. This is a side of cancer that no one tells you about and i certainly was not aware of. It’s almost like a change in personality

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@cherziggy

The anastrozole and letrozole definitely made me feel as you described. I’m still not me but much closer without these drugs.

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That was a beautiful post rhongirl. Many of us can echo your emotions and struggles.
I was diagnosed at 70 in Dec 22 with ILC which was TNBC in one breast and IDC in the other breast. We live in MI but we ended up going to Mayo and then I was to have the surgery. However I had developed a large hematoma from the needle biopsy in my hometown so the Mayo surgeon had to delay my surgery for 5 weeks because the hematoma could hide pathology after surgery. He said because I was stage 1
it would be ok to wait. I was a nervous wreck about waiting, I'm sure you can all relate. I also had 2 spinal compression fractures from osteoporosis during this time. I felt like a total mess. So we went home and I am a great believer in prayer and I was praying morning noon and night. I started reading books about positive thinking and how it affects your health. During this same time I was to lay flat on my back for 15 minutes a day to help with the spinal compression fractures. So I decided this was the perfect time to get my mind in a positive state. So I started what I call my " Optimistic Self Talk" and I still do it each and every day. I know it has helped me immensely. As I am laying down I put a 15 minute timer on my phone. I close my eyes and I start with a prayer. Then I repeat over and over for the 15 minutes, "Love, Light, Optimism, Wellness and Healing. I am staying in a remission, I am staying free of cancer anywhere in my body. I am a Survivor and I will stay a Survivor. I am well and healthy, I am just fine, all is well in my body. Thank you for my healing and healthy body. ". Then I just keep repeating that for the 15 minutes. I know it has made a big difference for me. Hopefully it can help some of you. Whenever I have a negative thought now about my health I just repeat some of my optimistic words to myself and it really helps me. Sending Love and Wellness Wishes to all of you. ❤️

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@deb23

It is hard. No one but the people I "meet" here understand how hard this is, emotionally. I am 1.5 yrs past surgery, 1 yr since last treatment, 1 yr on anastrozole. Before bc, I was a stable, happy-go-lucky, non-worrier, optimistic, detailed and organized person. Now I am sensitive to everything, major worrier, emotions up and down depending on the day, can't focus or organize anything, forget everything, and pessimistic 50% of the time. I hate it all!! I wonder if the anastrozole causes any of this? Or is it all the bc experience and aftermath and uncertainty of my future? Whatever it is, it is all new to me and difficult to accept my new "personality". My husband, kids, friends, family ... all seem to have put it behind them, and don't even ask how I am anymore, just get a strange look on their face when I do something that "isn't like me" (overreact, forget something, etc). It is a very difficult and completely overwhelming experience.

I appreciate everyone here and the things that are shared. We can all help each other realize and understand that we are not alone, and we are not "crazy" for these new and foreign feelings. Stay strong, and take good care.

Jump to this post

The anastrozole and letrozole definitely made me feel as you described. I’m still not me but much closer without these drugs.

REPLY

I began this post almost two years ago, because I felt like a little truth-telling would be good for me. People around me were acting like life was moving on (and on one hand, I was so glad for not being thought of as the woman with breast cancer), and yet I was still feeling so many emotions on the inside. I wanted my emotional equilibrium back (now, wondering what that ever looked like in the first place?), and I wasn't sure if it would ever return.

I am just over four years cancer free from TNBC. While my body looks normal on the outside, I am left with being physically "high maintenance" as my adult children call it. I can't take a lot of medications and I react to almost everything. We call me the "canary" in the mine. . .you know, when miners used to take a canary into the mines to make sure it was safe for them to be there (or to get out when the canary died)? The light-heartedness can help me adjust to my new normal, but then, at times, I can get a little weary of being the canary.

I've learned there are women who more seemingly move through this aftermath of breast cancer, and there are those who feel like they just do not recover. The jury is still out for me. For the most part, I have reentered my life, adjusted to the new normal, and dive in. I have fourteen grandchildren (almost fifteen), own my own business, and have a wonderful husband. I'm guessing, no one would ever know I still struggle emotionally from looking at me from the outside. Thing is, though, that my emotional topsy-turvy has me reacting to things differently than before. and I yearn for more stability in those emotions. I've seen a wonderful Christian psychologist a handful of times, but I left the office before my last scheduled appointment began. . . I just didn't want to talk about it anymore. I leveled with my medical provider about being down for the past two years, and she gave me a pep talk to exercise. . "It's summer!" and then walked off and waved saying (cheerfully, I might add), "Have a good day!" Um. . . let's just forget I had that experience. . . it's almost laughable, in fact, it is. Oh good grief. I have a master's in therapy and counseling. . . . I told myself that my provider did not and moved on.

There are times I grieve my old self - both physically and emotionally. . . my natural breasts are gone, along with all the sensation. Numbness replaced all that. My uterus and the remaining parts are all gone, too, due to a second cancer diagnosis after TNBC. Things are not the same as before, but I tell myself it's okay. There are just some days I don't fully receive that truth. And to that point of my provider with "go exercise! :D!" - it's not a lack of motivation, but it's deep aching on the inside that can sometimes stifle that highly driven woman I used to be. The new woman on the inside is tired, often. That can be hard to explain to another person. . . and then, the road is primed for guilt, shame, and sadness to follow because I find myself overweight and out of shape. But the good news is that I continue to TRY.

Our journeys are so individual . . . there is no real "right" or "wrong" way to do them. I think one of the best ways to help myself continue to learn how to walk this new journey is to give myself grace and time. Invest in the now. Give myself permission to have those times when things don't go as well as I'd hoped, or I didn't respond in the way I wanted to. Realize my emotional buttons are still a little more pronounced, and it doesn't take a lot to push them. Just BE OKAY, and let that be enough. I believe with my whole heart that God makes things beautiful in His timing . . . and daily, I learn to look to practice thankfulness and pray for my heart to heal from the trauma I experienced. And with time, I think it has. . .no, I know it has, and it continues to. Take a deep breath in and out. And then let God take the rest of it. I want my life to honor Him, and I want to honor those around me. Sometimes, that looks a little haphazard, I know, but if I want to be honest, things looked a little haphazard before BC. It's just now I understand more fully the value of this life and wanting to get it "right" more often than not. In the end, it is just about living life fully, and being okay in that fullness - whatever it now looks like.

My heart walks with all of you who have experienced this breast cancer journey. I'm trusting God to make something beautiful out of it for all of us. hugs 'n blessings to you all.

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When I got my dx (Nov. '21) I threw myself into reading everything I could about BC, then as my dx became more specific after biopsy and genetic testing (TNBC BRCA2+) I refocused my efforts to learn everything I could about that specific type of BC and what I could anticipate as possible treatment and side effects. This armed me with information - which I felt empowered me. I didn't tell my husband until I knew my dx, so I did all testing and biopsies by myself. I didn't tell any family about my dx until the beginning of the year, just before I started chemo treatment and when I told them - it was to say this is what I have and this is the anticipated plan for treatment. As each new treatment was planned I researched so I knew what I might expect and how to be prepared in case I experienced side effects. I've since completed all treatment, except I now take Lynparza - which has some small side effects. I'll be on that until the end of the year. Everything I've read says taking this medicine is because of the BRCA2+ mutated gene. I still don't fully understand what it does to the gene and potential cancer cells, but I only have to take for one year, so half way there.

I do know that after all that intense focus to potential treatment, side effects then completing everything - I sort of feel lost sometimes. Like I'm in a waiting game for the next thing to occur. I retired so work no longer has my attention. I've been making myself a list of things I want to do and learn; I've also started walking and exercising. My Medicare plan provides me access to the "Silver Sneakers" exercise programs which I've found excellent in the variety of exercise types and when I can do them - some are on-demand (watch a video) others are live Zoom sessions - they range in time from 15 to 45 minutes. But it has been an effort to adjust and try to find a new "normal". But in the back of my mind I wonder if there will be a recurrence, TNBC has a higher rate of recurrence during the first 5 years - so I have 4 years to go.

I don't believe there is a "cure" for BC; but there is a way to immediately treat the disease and then there are steps to monitor. I think the semi-annual scans and lab work continue for 5 years post treatment (for my type of BC) because then recurrence rate decreases. But I don't think I'll never worry about having BC as even though recurrence rate minimizes it can always reappear somewhere else in my body. I doing what I can or what I've read "should" help; but sometimes I think it's a throw of the dice whether "IT" will return. But I try to not give it more power over my life than I want it to have. My bucket-list is more important.

Man have I rambled on - thank you for listening. It has been empowering to express myself to others to get it.

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