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Is anyone else not "thriving" .....or am I just doing it wrong?

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Hello ladies!

Anyone else having a hard time moving past cancer? It's been just over 3 years since treatments were finished, but I still feel like I'm in a never ending circle of tests, pains, illnesses, fears...the list goes on.

I understand that we have to find our way through this new normal, but I apparently forgot to ask for directions, so I keep getting lost.

I see all these women thriving after cancer, how do they do it? Am I the only one?

Comments

  • threetree
    threetree Member Posts: 1,429
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    Sorry that I have no suggestions for improvement, but I feel exactly the same way you do. It's been about three years now for me too.

    I will try to watch for replies and I want to thank you for posting on this issue. I thought it might just be me too.

    I also commend you for being willing to try and navigate this mess of a "new and improved" website. It takes some real determination.

  • lw422
    lw422 Member Posts: 1,403
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    My treatment ended in November, so I am still in mourning for my previous life. I'm still struggling with tightness and nerve weirdness from the mastectomy and other after-effects of chemo/radiation. I spend far too much time now obsessing about whether or not I will develop lymphedema since I had 2 levels of nodes removed. It seems that cancer casts a long shadow over our lives and I'm so tired of WORRYING about stuff and being afraid. I suppose I'm still a ways from "thriving," but I'm happy that I'm still here to complain about it.


  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
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    You’re not alone. I’m almost 3 years out since diagnosis, and ironically, I feel more anxious now than I did during the first year post diagnosis. I believe that my fear and anxiety of Covid contributed (and contributes) to this. If not for Covid, could I have moved on more easily with travel, gatherings, celebrations, seeing Grandchildren more frequently? I don’t know, but I believe it may have been easier to transition back into my life.

  • gb2115
    gb2115 Member Posts: 553
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    I got a "yay you are done your treatments" letter from the nurse navigator. I'm in terrible pain from yesterday's Zometa, and two days into exemestane. Tamoxifen failed after 5 years, so I know the drill with hormone therapy (I had debilitating tendon pain on tamoxifen) and know I'm really just getting started.

    What's worse is all my coworkers keep commenting on how good I look. I must fake it really well, because I'm struggling so much.

    I might give that nurse a call.

  • bcincolorado
    bcincolorado Member Posts: 4,701
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    I have been done for a few years with my hormonal therapy but the testing and the worry do not go away. I still pay attention to what is going on and have issues and get tested regularly and still my oncologist as well. You are not doing it "wrong". There is no "right way" to do it. You sometimes try to distract yourself to other things as much as you can sometimes. Hang in there.

  • wallycat
    wallycat Member Posts: 1,307
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    You're not doing it wrong. Three years is not long enough to distance yourself from a life-altering experience. It takes time to come to terms with what happened, what your brain can process that may happen, and then feel OK that you have no control over any of it. Even then, any one thing can bring back the fear and the uncertainty. Cancer, the gift that keeps on giving. Rant.


  • kksmom3
    kksmom3 Member Posts: 101
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    I am at 3.5 years as well. Honestly, the first 2 years was rough. I never stopped thinking about all of it. There are so many different levels of feelings that you have to process through. The day I learned I got upgraded to stage 1A from 0, was absolutely the worst day of my life. An hour after we got home, we found out our best friend's husband had passed suddenly in his sleep. So my husband had a lot on his plate too. Now, the 2 events are intertwined in my mind, As if cancer wasn't bad enough! And then Covid!

    Now, however, things have settled down. Around mammo time, I'm nervous. That has almost gotten worse as time has gone by. However, that's about a week and it's just something I'm going to have to contend with. Walks in nature were my salvation. I could cry in private if I needed, where I go, nobody else seems to know about, it's a very vast park. A little harder in the winter, but I have my kids and grandkids, that helps too. Just staying busy, But, yeah........I feel like other people, "do it better." I think they're scared too, they just hide it. Just like I do. Probably like most of us do. I'm not a person who talks about it on social media either. I know a few local survivors, and they're posting about it all the time. That made me think I was "doing it wrong." But, I'm not, and they're not. 'We all handle it, as long as we're moving forward, we're "doing it right."

  • alicebastable
    alicebastable Member Posts: 1,945
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    Exterior Me is cheerful and tries to tell people how to cope by doing fun things. Interior Me thinks about recurrences and spread and new cancers every minute of every day. Luckily, Exterior Me tells Interior Me to put a sock in it most of the time. But IM doesn't always listen.


  • rah2464
    rah2464 Member Posts: 1,192
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    I am close to four years out now and am finding as I have resolved some of my mastectomy pain issues I feel more of the old "me" coming back. She won't truly appear until after I am past the hormonal therapy because ugh that makes me into a zombie a lot of days. I do mourn the loss of total health though. I am left with some lymphedema which is a royal pain in the butt. Treatment just takes some pieces away, kind of like aging does. So we face limitations earlier in our life story. For me, things got a little easier after year two in terms of managing the thoughts of recurrence. This was after two scares and some imaging so I definitely spun in it for a while. I think it is so very individual and you are wise to connect with your medical team to speak about it. The emotional impact of this disease is truly under treated.

  • krystinem
    krystinem Member Posts: 7
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    Thanks Ladies!!

    As much as I'm sorry to hear you are all still struggling as well...It's nice to hear I'm not the only one.

  • wondering44
    wondering44 Member Posts: 261
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    Hi, krystinem,

    I try to look at all of the positives of the dx. I learned to live each day better because I understood with the dx that I won't get to live any longer one day. I looked back at my days and reflected on the little things that were of no value when the more significant things like cancer occurred.

    I, too, fear that cancer will return or I will get a stage IV diagnosis every day. I miss my life before cancer (the intimacy I had with my spouse). That I know will not return, and it was genuinely great. Cancer changed it, and the hormone blockers changed it.

    If I get a cancer dx again, I want to know I lived each day to the best of my ability, so I don't miss anything in life. I want to make sure I spend my time with my family, enjoying the time we have together. All of these days could come to a halt with more treatments, and I don't want to miss out on any of them.

    Getting a dx is a trauma. You are not wrong to feel what you are feeling. Everyone works through the trauma differently. You found your way through cancer, and you will find a way through the trauma of it. Don't harp on yourself for not feeling like another person or because you don't see yourself "thriving" as other women do. Cancer can feel like a BIG sucker punch, and we all heal from those punches in different ways and lengths of time.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
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    I have read this thread with great interest. I am in a different position than those who have posted, being stage IV de novo. Let me start by saying there is no one “right" way as we all come into this with a host of different experiences, physical, mental, and emotional. For myself, a de novo stage IV dx meant that I would quite likely die sooner rather than later. Despite all the advances in tx, which I am not knocking, there is no cure for mbc. After dealing with the initial shock and related emotions, I sat down and had a hard talk with myself (yes, I talk to myself!). I pushed the emotion aside, not easy, and looked at the facts that I knew at the time and the plan going forward. I cut out the “what ifs" and any attempts to predict the future (due to faulty crystal ball 😉). I realized that I could worry about and constantly focus on bc but in doing so I would be missing out on life. Stage IV and bc in general takes a lot from us and there and then I decided I wasn't going to voluntarily give up any more of myself to bc. Lest you think that this was accomplished easily, it wasn't. Counseling and Effexor have been tremendous helpers!

    So, much to my surprise and delight, ten years passes by in a flash. In that time I saw my younger dd get married, became a grandmother x3, saw older daughter divorce and then reunite with her former fiancé in a great relationship. I worked at a career I loved until retirement and adopted a dog this past October. I had no idea I would live this long as most don't but I am eternally grateful that I learned to embrace life whether that life would last ten days, months, or years. My point is that you have absolutely no way of seeing the future. Don't borrow trouble and don't let bc take more than it already has. Seek counseling, medication or whatever you need to live. Take care

  • moth
    moth Member Posts: 3,293
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    I had a period of NED time when I finished stage 1 treatment & before I was diagnosed with terminal metastatic cancer so I have lived experience with this as well. (& my subtype, unlike exbrnxgrl's has a median survival of 2-3 yrs, so no, decades are not in front of me - unlesss some researcher pulls out a magic test tube out of a hat in the next 12 months....)

    I hate toxic positivity and I dislike the term thriver.

    BUT, when I finished stage 1 treatment I got on with life in a big way. I was busy. I had a plan. I had things to do. I gave it my all - until I got kneecapped by the metastatic diagnosis about a 17 mos after finishing treatment.

    I think if someone is stuck, I would consider big issues. Are you depressed? Do you know what you want to do with your life? I think this is a big one that stews at the back of our minds .... we know we've got a second chance, so now what? What do you want it to look like? I fell into my life 10000% because I knew exactly what I wanted & I did it. You may need to do some workbooks like Finding your North Star or maybe The Artist's Way & morning pages... some counsellling, tweaking meds, changing schedules, adapting sleep/exercise/quiet time to really dig down and figure out what you want. It doesn't have to be big or 'inspirational'. It can be quiet and serene or loud and impulsive and raucous. It's what you want ... & that's sometimes the hardest thing to identify, in a culture which tries to tell us what we want/what we should want at every opportunity.

    This is your chance to find yourself. This discomfort is I think, all about how weird it is that we often don't know ourselves very well. You're not doing it wrong - you're just taking the time to do it.

    best wishes

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
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    moth,

    I have no idea what survival stats look like for my subtype, only the overall stats for mbc. I am generally not a proponent of the ignorance is bliss school of thought but in this case what I don’t know hasn’t hurt me

  • ALE777
    ALE777 Member Posts: 6
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    I am 7 months into diagnosis. The first discussion with the breast surgeon was this is early stage, he basically told me I needed to get a mastectomy for cosmetic reasons (I had 2 1 cm tumors in 2 quadrants). He told me that all the treatment needed was the surgery and recommended a plastic surgeon. That plastic surgeon wanted to do immediate reconstruction on right and a little reduction on left so that I would have a matched set. It all seemed so straightforward and easy. I have had multiple surgeries in past for other issues and never had a problem I was given the standard very low likelihood of any complications. They had me believing I would basically be done in a few months except for checks. I thought ok this sucks but I can do this. And then the never ending complications and 'surprises' began.

    It really started with biopsy. After the dr(?) left, the nurse seemed concerned and kept pressure on my right side for about 10 minutes. I left with a huge hematoma and no one mentioned it or what I should do about it. It was so big that when going for next scans and dr visits they all reacted physically to it. ok things happen Avoid that dr(?) in future. I had a breast MRI and they saw something on left breast but after another biopsy they said it was benign. Cool. I had my first surgery and they said it was successful but the circulating nurse had somehow made a mistake with my SLN sample so they couldn't get immediate pathology. The surgeon said he examined it though and it looked 'clinically negative'. Since I was having a reduction on left they went ahead and cut out the part that came up benign and sent to pathology. About a week later got a double whammy of bad news. Both the SLN sample and left breast pathology came back positive for cancer. Surgeon expressed shock. Really strange was both samples came back at 4 mm found. Odd coincidence but ok what's next. Another SLN surgery on left side now. Came back negative but lots of swelling after (drained 3 times) Oh and now not only have to do radiation on left side after having the accidental lumpectomy, but also full right side on mastectomy axilla and superclavical Basically from the belly button up on both sides. I felt fine except for a lot of swelling and pain on right side I finshed expansion and was due to start radiation the next week. And then infection (cellulitis) hit. No one mentioned if you get an infection they have to remove the expander. I guess its common sense but I thought u take antibiotics and done, Rushed to ER and then 3rd surgery in month Im now lopsided Radiation must go on and did 2 weeks later even with incision not healed. 5 wks later done w/radiation another couple wks to heal from bad moist desquamation on both armpits Now a month later and I guess Im done.. RO didnt even show up for telehealth folo. I do have PT because that swelling on right side is lymphedema. After early times drs made lymphadema into boogie man, I initiated seeing therapist for baseline JIC, turns out have it and told BS and it was like alrighty no big deal.

    So sorry very long story but now I guess Im done with cancer team. Just taking a pill a day for hormone therapy. Next is finding a plastic surgeon to do more complicated autoligous reconstruction in fall. No scans or anything until 1 year after diagnosis. I feel like I should be happy but feels anticlimatic. Is this usual? Drs just move on so soon? Or should I be finding new drs? My trust has been broken My lesson is cancer is never easy even early stage and I dont think drs should portray it that way. The agressive treatment is brutal no matter how little cancer you have

  • alicebastable
    alicebastable Member Posts: 1,945
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    "Both the SLN sample and left breast pathology came back positive for metastatic cancer"

    I think metastatic only shows when it's spread to other parts of the body, not the breasts. Did they mean micromets in the SLN? It's not really the same. I hope someone more knowledgeable will jump in here. I'm sorry everything turned out so messy for you.

  • salamandra
    salamandra Member Posts: 745
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    ale,

    That sounds like a nightmare, and no, not typical. I continued seeing my surgical oncologist or her nurse practitioner for two years following the surgery, every 6 months or so I believe. I am still seeing the same medical oncologist I met with after the surgery. The only doctor I did not see after the fact was the radiologist.

    While I hope you had excellent medical care, it sounds like you had pretty awful communication, which makes for a terrible experience even if circumstances are not so difficult as yours. I'm so sorry.

    Does your treatment center have a nurse navigator, social worker, mental health unit, or integrative care unit? These could be places you could start with for more support with processing where you've been, where you are, and where you're going. If not, I can personally recommend Sharsheret (a Jewish organization that serves everybody). They can connect you to your own social worker and to support. A social worker is a great help - they are trained to be both emotionally supportive and logistically useful.

    There are many other organizations as well that support breast cancer patients. You are not alone and you do not have to do this alone.

  • wondering44
    wondering44 Member Posts: 261
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    ale,

    That sounds beastly.

    Just an FYI - I recently learned the scans do NOT wait until a year afterward. The scans should be done immediately and prior to reconstruction. The new baseline should be established before reconstruction. The breasts should be rechecked before reconstruction to ensure the mastectomy was complete and no other areas of concern are showing in case a re-excision is needed (prior to radiation). The Breast Surgeon is the person who should order mammograms/imaging after the mastectomy and lumpectomy. If I had a Cancer Team that followed these protocols I would not be repeating my mastectomy or losing my breasts.

    You may want to find a Plastic Surgeon who tells you to wait until next year to start the reconstruction since you did radiation. Your breasts need time to heal. I have to wait no less than six months after radiation for the next surgery. I have a bilateral mastectomy with TEs scheduled in a few months.

    I don't know why the standard is not the same at every facility…so many comments I won't post.

  • jrnj
    jrnj Member Posts: 407
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    krystinem, I’m almost 3 years from dx and in constant pain and exhausted from letrozole. My feet are the worst. Walking is important. I’ve had a lot of mental scares every time something hurts, is it cancer? But I’m more scared to quit AIs, so I suffer. for me trying to move on is hard because my pre-cancer anxiety comes back and is just as debilitating. I’m a terrible mother, my marriage sucks, my job is exhausting, I’m bored, I have social anxiety, my kids have social anxiety….


    ale777, I had a similar experience. Drs downplaying, surprises, infection. I had DIEP later. I’m not thrilled with the results and that caused me a lot of anxiety also, However, I do see the infection as a blessing in disguise. I’m glad I don’t have implants

  • noey69
    noey69 Member Posts: 20
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    This post caught my interest as I ask myself daily - when can I stop thinking about cancer. I was diagnosed in February of this year, had lumpectomy in April, and am now in the middle of radiation. I keep myself busy to try and not ruminate about having cancer, but it just keeps popping back in my mind. And, I've had a headache for the past couple of weeks. Of course, my mind goes directly to cancer, even though my rational self says I'm an idiot or an alarmist for thinking so. I do find myself wondering what to bring up to my doctors. I feel silly for mentioning every little ache and pain. I wish they just scanned your whole body to give you piece of mind!

    Next come the monthly injections and the daily AI pills which I fear will just serve to remind me that cancer could come back.

    The advice to live each day is truly the best and I imagine I should reach out for counseling as well. I truly would take a pill that would make me forget about cancer if it were offered…although, the way my memory has been lately, I may need to be careful what I wish for!


    Hugs to everyone

  • ALE777
    ALE777 Member Posts: 6
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    Sorry the right SLN was metastatic since must have spread from breast, the left was just invasive carcinoma, so have what I was told is its rare synchronous bilateral cancer

  • ALE777
    ALE777 Member Posts: 6
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    Thanks thats a really good point about scans before new reconstruction.i will remember to ask about that. To be clear, I am aware in big scheme of things I am very lucky it was early stage found on mammogram, no symptoms and that the cancer should be gone, at least for now. Just was a reminder to me that going through the process is never easy. I am really just curious if my experience beyond the complications was normal or other people had different experiences with their team Thanks for everyones input

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    Krystine, you may want to consider asking your doctor for an antidepressant to get you through this. My pcp worked with me to find the right meds. Some people feel they have to soldier through and tough things out, trying to make the best of things or tolerating less quality of life. But why? No one’s giving out free Bahama vacations to those who don’t take an antidepressant. I had a certain pride I had to let go of because I was raised to be stoic in all situations and simply handle them. However, bc was a game changer. I let go of old ideas that were not serving me well and was open minded to ways of improving my mental health. No amount of stress reduction, simplifying, quiet time alone, etc. was touching those parts of me that needed help. An antidepressant and an-anti-anxiety medicine were what I needed to help me move forward.

    I still take the meds but many people only need them to get through a rough period. So please consider. It is a way to practice self-care. One offshoot of taking the meds was not only did it help me feel better but it improved my relationships with others because I was not on edge all the time. Everyone benefits when we have better interactions with our loved ones, us and them. And the meds don’t change my personality. I still feel all different emotions but I don’t get stuck in a downward spiral and stay there. It’s easier to move on.

    Best wishes to you.

  • bcincolorado
    bcincolorado Member Posts: 4,701
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    My Grandma used to tell me all the time if it was not one thing it was six. That is truth with this. Hope everyone can just relax and take a break from this for a day and not worry as much for one day.

  • lw422
    lw422 Member Posts: 1,403
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    Once you have had cancer, you may be cancer free but you are never free of cancer. It's always in the back of my mind but hopefully with time the anxiety over every new ache and pain will quiet down. Hugs to all of you.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,797
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    I will be the first person to say I have not thrived post BC. I worry about everything. I take cymbalta to help with joint pain with arimidex and I hope it helps with my worries, but I'm not sure. Every pain is a concern. My mind knows I coujd get hit by a bus or drop from a heart attack, but cancer recurrence is what I worry most about. Right now, I have an enlarged right ovary. I've been reading everything and given my age all the non threatening things are unlikely. It floods back like it was yesterday. I'm not sure there is a drug that will fix it.

  • odyssey305
    odyssey305 Member Posts: 37
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    I stumbled on this post and have found so much support, at a time when I needed it most! I'm 6 months out from diagnosis and thought I had weathered the whole mess rather well until I got an email from the nurse navigator, with the subject line “Congratulations! You've completed active treatment!" Like I had just won a car. I know I should be happy/grateful/relieved, and I am, but I'm also living in this weird reality of multiple side effects from the Letrozole anda constant uneasiness like I'm waiting for the other shoe to drop. So no, I don't feel like celebrating at the moment. I'm hoping to find a happy medium between living my best life and being aware that my body will never be the same, minus allthe anxiety. But it's hard and I'm not there yet, especially since I'm back in the throes of scanning since I discovered nipple discharge on the lumpectomy breast…ugh! I do know that there's no right or wrong way to do cancer, just a way forward. Hopefully we can all do that with our sanity stil intact lol.