Struggles in Survivorship?

It’s been a while since your post but as I’m laying here unable to sleep due to my incessant anxiety I’m reading your post and can relate. I was diagnosed at age 42 and it’s been just over 5 years from my diagnosis. Treatment all went well done and over but that is now seeming like that might have been an easier part of the big c then the survivorship. During treatment I was so focused on getting through the surgeries and chemos that there wasn’t a lot of time to focus on what was actually happening to me. Being in a new body that I didn’t ask for and am suppose to be grateful for has not been easy. It’s not just the body, my entire self has changed. I used to be confident. I used to be effortlessly beautiful. I used to be fun. I used to not feel feelings I didn’t want to. I never asked to become a more whole person and it’s truly exhausting and usually depressing. I have been with a wonderful therapist who has helped me with a lot and guided me towards gratitude and appreciation but i still struggle with the person I am now vs who I was before cancer. I’m not a bad version of myself, just one I don’t know. I feel uncomfortable in my own head because I don’t recognize myself mentally and physically. I’m sorry I’ve rambled on a bit but just know your not alone. I’ve searched for a survivor support group as well and can’t seem to find one so rant away I must. I feel like it’s a heartbreak that is never ending.

Hi,

I was diagnosed this year and had my double mastectomy in April, radiation completed in August. Though mine was pretty recent I can relate to what the both of you are saying. I'm so grateful for things having gone so well but now in this post op state, I don't feel myself. Though I know my body is still healing I'm fustrated at the fact that just a few weeks ago I was feeling great, way better than I do right now. Logically, I should feel better with time passing and that's not the case. None of my providers can really pinpoint the source of what I'm feeling. And symptons worsen if I'm not in a good mindframe. All that to say, you're not alone.

New here and glad to stumble on your post. I was diagnosed in October 2018 at age 44 (5 months from 45) stage 2 ER + PR+ Her- no lymph involvement. 4 rounds of chemotherapy, double mastectomy and ovaries removed. I’m on Arimidex.

I have suffered since my teen years with depression and anxiety and going through cancer pretty much tripled my anxiety. I can’t go into boards like this too often, I start to read others posts and immediately I have their symptoms and I’m calling my doctor. I don’t know myself anymore. There is before cancer me and after cancer me. I worry a lot about recurrence. I have always had back pain, since an injury in childhood.. well, I just spent the mornings in the emergency room because my back pain is driving me wild and the more I think about it, the worse it gets. I am so scared of it being something more. I’ve had scans done and they did an x ray and just gave me muscle relaxers and pain meds and told me to talk to my oncologist if it doesn’t go away. My oncologist is strict with me. I will talk to her tomorrow and see what she thinks, but she knows I would ask to be scanned monthly if I could 😉

I hate it. The constant fear and uncertainty. People see me and tell me “you look so great” I could scream, they don’t know the inner battles I’m going through. My mom went through breast cancer 11 years ago, she is my hero. She is so strong, she doesn’t worry, she just takes each day and lives it. I want to be more like her. I don’t want to waste my life with constant fear and anxiety. Nobody tells you how hard this is going to be. I have a friend who went through all of this as well, she won’t hardly ever discuss it, she copes the best when she just never talks about it. I can understand that, you just have to do whatever works best for you.

I think back to the person I was before the big C and I feel like I don’t even know her.

Anyway, sorry for rambling. Also, since having my ovaries removed and going on the hormone blocker, I’ve gained 25 pounds. I actually struggled with an eating disorder in my teens and 20’s and was scary thin. The weight gain has certainly not been fun, but I will say I have gained (no pun intended) a lot of perspective on it.. I don’t care so much anymore. I’m here right now and even though I’m sometimes frustrated with how my clothes fit and even though I’m active and watch what I eat, I cannot seem to lose weight.. ok. It’s not the end of the world and my husband loves me as I am. In that one area.. I’m proud of myself. I see so many girls and woman so painfully thin because they believe that is what society demand from them… and I’m just happy to have another day with my family in my chubbier body😊

blessings to all of you

Oh Ladies, I can relate to every single one of you and am relieved to know that I'm not the only one struggling with the after effects of active treatment. My breast cancer is stage 2 - it reached the lymph nodes. I had bilateral mastectomy on Valentines Day 2022 (hard to forget that date 😂), finished 4 months of chemo late July, and 33 radiation treatments end of September. Now I'm on hormone therapy (letrozole and Verzenio) that is wreaking havoc with the side effects.

I had a ridiculously difficult time with chemo, and radiation was no picnic either. And my surgery took longer to heal than normal. Like someone said, I was so focused on just living through all of that treatment that I haven't had time to process the fact that I have breast cancer and all of the ramifications.

And I've got further issues as my beloved hubby of 30 years has terminal liver disease and is probably going to die next year, and I had to bury my 19 year old cat about a month ago. She was a god send in keeping me company through everything, but especially chemo, with her sweet warm huggable body and her magnificent purr. I miss her and cry every day.

I know that theoretically I'm in remission but how do you ever really know? There's no test you can do, so you're always living with the uncertainty of it all.

Like you, I don't know myself any more. I look at photos of myself before cancer and think about how carefree I was then. Now the black cloud of cancer looms over my head every hour of every day and I don't recognize or know myself any more.

I was small busted so the mastectomy in some ways was not as radical a change as it might be for someone more busty that I ever was. I've opted to "go flat". I have a prosthesis, but I don't think I will ever wear it because it just reminds me of everything I've lost. I hate getting in the shower - I miss my bosom girls! They were small, but they were mine. The thought of wearing a prosthesis makes me think I'd be like my junior high self stuffing a bra with kleenex. I just don't want to go there.

I too want to scream at the next person that tells me that I look great. Really??? That's your "helpful" comment to me? You have absolutely no idea whatsoever what's going on in my head or what it's like to suffer through this ordeal. When my brother says this to me, at least he adds "but do you feel good?". People have no clue - except you girls!

I had hoped that once I got through active treatment, that things would get easier, but now I find that I'm lost and trying to put myself back together. So I'm very thankful to chat with you all. Thanks for "listening"!

Thanks for your encouragement and I wish you the best in your quest to find yourself as well!

I came to this site specifically looking for emotional support. Just diagnosed 12/8/22 waiting for appt. To see oncologist. Freaking out mostly. I have invasive mammary adenocarcinoma with all 3 hormone receptors positive. I thought ACS would have resource for counseling

I am a long term survivor, 30 years, a couple of negative biopsies during this time.

When I was diagnosed at the time there was no internet, during mu chemo,since I had never met anyone that had cancer I volunteer at one, I had a great support gr6 I attended.

I am a very positive person, my oncologist told me" make plans and stay away from negative people, think on you first, spoil yourself." I was devoted to my husband and kids, well started working at the cancer center, and did not have time to feel sorry for myself working with my patients ,specially the teens and children

Find something you like to do,keep busy.

I had a lot of loss of loved ones during this years,husband, parents,brother,but never I pity me.

Hug yourself, love yourself, be#1 for you, ignore comments that are negative.

I live with chronic pain due to PMR but nothing can bring me down.

Find friends,join a support group on line or person.