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.

@kathy88

Yes I had 1 it was .90mm sentinel node 26 were taken all negative. The oncologist said I would be resistant. I appreciate the message, next week I get colonoscopy for stomachache.

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Hi Kathy88! If you look at the email from MayoConnect, look down to where it says "Events." You will find a couple of online breast cancer support groups listed there. The first one I saw is "Breast Cancer Support Group Meeting, Mon, Jul 8, 2024, 7:00pm to 8:00pm CT (Central Time)." The contact person is Lisa Halverson, Email: lisahalver@gmail.com, Phone: 507-254-4141. Send her an email to get a Zoom invitation. If you click on the link below, you should go to the information about it: https://connect.mayoclinic.org/event/breast-cancer-support-group-138/?utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=digest&utm_content=summary_events_event

I hope this helps!
DLST (Deb)

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@kathy88

Yes I had 1 it was .90mm sentinel node 26 were taken all negative. The oncologist said I would be resistant. I appreciate the message, next week I get colonoscopy for stomachache.

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So they took out 26 additional lymph nodes?

For me - They only took out the sentinal node one (pos) and another one (neg) which I think was close to the sentinel. They told me that they don’t take out more than 2-3 anymore because they know how they trail? Plus because of Lympademia.

Did you get radiation also on your breast and in the lymph node area? How many treatments of radiation?

Mine is invasive ductal
Luminal A
Stage 1b
+0.304

They did MammaPrint on me.

I wander if your doctor would put you on Verzenia? (New).

Are you now taking any hormone therapy pills? 💊 There are 4 types, maybe another one?

How old are you? I’m 62.

I am so stressed 😫 too.

I’m also due for colonoscopy too.

Do you have your ovaries? I still have my ovaries.

Jane
LadyoftheLake.

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The emotional aspect is the hardest. I had 1A, clear margins, no nodes. Onco Score was 43. Chemo and radiation. Now back on Anastrozole after trying the other 2. I am on my 3rd oncologist. Trying a female this time.
I see her in August. 1 year after diagnosis. The Chemo nearly killed me, to the point that of the 4 treatments the second 2 were half doses. I think they were worried that it was so hard on my body that due to chemo side effects tending to get worse as treatment progressed that they would cause more harm than good. I have had to have cortisone injections in 2 of my fingers due to joint issues from anastrazole. I did an AI search trying to get it to tell me what I couldn't get the doctors to spend enough time to answer and that was what were my percentages of return if I went off the estrogen blockers. AI said 35% greater chance so I stayed on it. The constant running in the background of the possibility of return is almost to the point of mental illness. I'm not afraid of dying. I just dread the process of having to decide what to do if there was a return.

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I know I've had similar experiences. I was able to maintain some obligations and participation in fun events. And how quickly people forgot I was still having chemo. I lost all my hair and wore hats until my hair came back.
I'm two years out from my last treatment and am beginning to feel normal in my own skin. I am not on any hormone suppressants but had two rounds of chemo separated by surgery and radiation.
Like you I'm not afraid to die but I want to life until it's time. It has taken these 2 years post treatment to realize that I don't have to wait for the cancer to return. Maybe it will but maybe it won't. How do I want to spend my time?
I have a sister who is waiting to die since she ended treatment for leukemia 5 years ago. I'm so sad for her and the life she is missing. Heal well my friend

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People forget about you quickly. It is a long journey. I was diagnosed in April 2023. Still dealing with associated medical issues. The mental anxiety is excruciating for me. It just goes on and on…
Prayers for all of us!

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I’m waiting for my emotional roller coaster to stop! I feel your pain. Will I ever feel like I did before diagnosis and treatment? I feel like I didn’t soak up my “old” life while it was happening. I pine for it constantly. I’m frantic about doing things now. I feel like I might run out of time. It’s torture. I wake at night with disturbing thoughts. I dislike myself for getting this disease. The hardest part is seeing my husband and children worry!
Much love to you! I wish for you to feel better emotionally!

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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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@cherziggy

I’m waiting for my emotional roller coaster to stop! I feel your pain. Will I ever feel like I did before diagnosis and treatment? I feel like I didn’t soak up my “old” life while it was happening. I pine for it constantly. I’m frantic about doing things now. I feel like I might run out of time. It’s torture. I wake at night with disturbing thoughts. I dislike myself for getting this disease. The hardest part is seeing my husband and children worry!
Much love to you! I wish for you to feel better emotionally!

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I thought it was only me. I finished treatment in October I just finished probably my last fat grafting for a double mastectomy July 1 st. I lost who I was. I was an ED nurse for years had 3 kids was always on the go now I stay home most of the time. I can’t remember a lot of nursing stuff or even basic stuff. I am extremely fatigued all the time and I don’t like myself at all. I can’t get back to where I was and I don’t know why.

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@cartersgirl2

I thought it was only me. I finished treatment in October I just finished probably my last fat grafting for a double mastectomy July 1 st. I lost who I was. I was an ED nurse for years had 3 kids was always on the go now I stay home most of the time. I can’t remember a lot of nursing stuff or even basic stuff. I am extremely fatigued all the time and I don’t like myself at all. I can’t get back to where I was and I don’t know why.

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It’s comforting to know I’m not alone. I’m so mad at myself for letting this happen to my body. Hardest part is my 4 kids. I’m trying to let it go.
I’ve stopped taking my AI’s. I have tried 2 and the side effects devastated me which led to 4 more surgeries. So now I’m terrified to try the 3rd one it and terrified not to.
I can relate to the staying home. I was always on the go but now get panicky when I leave the house. I almost feel agoraphobic.
Blessings to you, we have to stay positive!

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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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