Struggles in Survivorship?

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AWCass
AWCass Member Posts: 15 Member
edited April 2023 in Breast Cancer #1

Hello,

I'm new to this group, though I wish I'd joined years ago. I'd like to first say that I hesitate to post this question given the weight of so many recent posts about currently going through the diagnosis and/or treatment phase. However it is something that I have struggled with greatly and can't be the only one, so maybe it's time I finally share a bit.

I was diagnosed with stage 1 breast cancer (HR+/HER2-, BRCA-, Genetics -) at the end of 2018 at age 35. I was blessed with an incredible care team and moved quickly through treatment, completing chemo and radiation by the end of March 2019. I used a cold cap during chemo to maintain as much of my hair as possible; it worked for the most part but was an extremely traumatic part of my experience. A year+ into remission (2020) I took my care team's advice and had my ovaries removed which put me in menopause.

I am now 3 years in remission. I have since struggled to accept the changes that my body has gone through (physically and physiologically) and feel an extreme disconnect between who I was pre-cancer and who I have become post-cancer. I have been seeing a therapist for other issues, but can't shake a nagging feeling that my cancer journey has more to do with the anxiety/depression/emptiness than I've yet been able to process.

I'm sharing this here because I am wondering if anyone can relate or has experienced anything similar. And/or, if anyone knows of any existing resources or support groups. Most of the resources I've found online are restricted to survivors who have completed treatment in the last 18mos. If there are not any/many known support groups, I've been thinking of starting one.

Thank you all for listening.

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  • lafodm1
    lafodm1 Member Posts: 1 Member
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    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.

  • AWCass
    AWCass Member Posts: 15 Member
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    @lafodm1 Thank you so much for sharing your story! Selfishly, I'm relieved to know someone else has experienced similar feelings. You summed up the feelings and struggles I have also experienced so eloquently. Are you comfortable sharing any of your learnings or insights from your therapist that have helped you the most?

    I have been continuing my research and quest for longer-term survivor support, and in doing so I started reading more about PTSD in cancer survivors. Seeing as it's listed as a common occurrence in survivors, you'd think there would be more widely accessible resources. So, I'm going to start a group. Stay tuned on that.

    Thank you again for sharing your story. Connecting with you here has been very powerful, and I appreciate it.

  • melitza14
    melitza14 Member Posts: 6 Member
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    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.

  • AWCass
    AWCass Member Posts: 15 Member
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    @melitza14 Thank you for sharing your story! I am glad to hear treatment went well for you. I also felt (and still feel) frustrated not feeling entirely healthy or like my old self. And I agree that state of mind does affect how we feel physically. Let's lift each other up! Thank you for connecting.

  • mnmom74
    mnmom74 Member Posts: 1 Member
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    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

  • AWCass
    AWCass Member Posts: 15 Member
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    @mnmom74 Thank you for your openness and vulnerability to share your experience. I can relate to so much of it, especially the fear of recurrence and not even recognizing your pre-cancer self. I also gained a ton of weight after having my ovaries removed, however, my entire lifestyle changed so I was not as active, I work from a computer all day, and my depression/anxiety spurred some unhealthy eating habits. I'm glad to hear you have found some things to celebrate though, and that you have a supportive husband and family. Truly, thank you for connecting.

  • SusanPB
    SusanPB Member Posts: 3 Member
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    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"!

  • AWCass
    AWCass Member Posts: 15 Member
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    @SusanPB Thank you so much for sharing your story. I can absolutely relate! I am sorry to hear that you've had to go through this and that you're struggling. I am here for you!

  • SusanPB
    SusanPB Member Posts: 3 Member
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    Thanks for your encouragement and I wish you the best in your quest to find yourself as well!

  • Llmiller1
    Llmiller1 Member Posts: 1 *
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    I am new to this today. I was diagnosed May 2021. Stage 1 estrogen positive. Was not able to have surgery until Aug. the tumor grew from 2.3cm to 4.6 cm. Two smaller ones nearby and two axillary lymph nodes positive. I ended up with bilateral mastectomy and at 64 yrs decided to stay flat. I had 16 rounds chemo then radiation 33 treatments. Now on Anastrozole. Yes, reoccurrence is very often on my mind and the battle of continuing the Arimidex due to side effects. Pain, stiffness, fatigue, trouble thinking and high cholesterol with sleep issues as well. I know prayer has given me much in many ways. My mind still wonders what’s best….med no med. Onco type score only 13. Meet with oncologist 23rd. This oncologist is not a good match for me. Too late to change…I guess

  • AWCass
    AWCass Member Posts: 15 Member
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    @Llmiller1 I'm so sorry to hear of your diagnosis and struggles. Thank you for sharing your story here. There are so many humungous decisions to be made through all this, and time is always of the essence. It's so challenging to be in a frame of mind to make those types of decisions when you're full of fear and fighting for your life. I believe that having a good care team was a big part of my ability to get through this and into remission. I also believe in and experienced the power of prayer; I'm grateful to hear you found that as well. I will pray for you! I am here for you.

  • SusanPB
    SusanPB Member Posts: 3 Member
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    I didn't indicate in my post, but I'm 65. At my age, and having been small busted to boot, going flat was almost a no brainer. I'm happy to hear of someone else who's made that same choice! I haven't been on my hormone therapy more than a few months, and the side effects are still working themselves out, but they certainly are annoying. I know what you mean about wondering what's best: med or no med.

    If it's really important to you, I would look for another oncologist. It's so important to find someone who's a good fit. I wouldn't think there would be any reason you couldn't change. All of your records should be sufficient for someone else to step in. I read somewhere of a gal who actually went through 3 oncologists before finding one she really liked. I have to say, I don't absolutely love my oncologist, but I do absolutely love her nurse assistant.

    Hang in there, you're not alone!

  • char111022
    char111022 Member Posts: 1 Member
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    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

  • CSNSupportTeam
    CSNSupportTeam admin Posts: 206
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    For additional support resources please contact the American Cancer Society's National Cancer Information Center at 1.800.227.2345.

    CSN Support Team

  • AWCass
    AWCass Member Posts: 15 Member
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    @char111022 I am so sorry to hear about your recent diagnosis. I know it is extremely terrifying and overwhelming right now. ACS is a great resource, and there are many out there for recently diagnosed. I found great resources with the Cancer Support Community. It's a national organization with various local offices throughout the country, but they also offer online programs as well. Just remember to breathe, take care of you, and above all, share your fear with loved and trusted people in your life for support. I am here for you in whatever manner you need. We are all here for you. Sending you love and prayer.

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    ACS is wonderful. I called the 1 800 number in the beginning during a complete meltdown and I found the best social worker ever. She specializes in cancer patient survival. I had a lumpectomy 8 months ago. Triple negative, no lymph node involvement and margins clear. 22 treatments of radiation that knock me flat on my back. It was a struggle, I had to argue with drs to get me physical therapy, my legs and hips were weak from lack of exercise. I am out of work. I am worried about finances, however through hard work, therapy and lots of tears and participating here has helped me get through this journey. You are not alone. I don't post here as often as I used to due to the fact it upsets me. It does give me a place to connect with other women that are experiencing the same fears, anxiety and emotions. Please reach out to us when you feel the need, someone is always here.

  • AWCass
    AWCass Member Posts: 15 Member
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    @Truckincrazy1 I am so glad to hear you were able to find support throughout your experience. That is my biggest regret was not seeking out support groups during and immediately after. Thank you for joining this conversation even though it is very upsetting for you. Cancer is a life-changing, traumatic experience. Glad you're here!

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    Thank you. My adult daughters didn't understand, people were afraid of the big C word, it was a hard journey and still is. I tried FB groups, was even restricted due to the fact I asked to many questions and I was upsetting other members????? I left all of the groups and I still check in here periodically. Its not over yet, however, I am now in a position where I am able to support my fellow woman during this. A dear friend of mine told me that God has a purpose for me here on earth. This could be it, to support and guide women that yes this is scary, you are NOT ALONE!

  • dreaming
    dreaming Member Posts: 26 Member
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    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.

  • AWCass
    AWCass Member Posts: 15 Member
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    @dreaming Thank you for sharing your experience! I am grateful to have gone through this with so many ways to find information and connection. I can't imagine how much more terrifying and isolating it must have been to go through that without the opportunities we have today. I am inspired by your optimism and strength!