2014 Diagnosed - How are you doing?

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This month marks my third anniversary - for diagnosis of intermediate breast cancer. August 2014 at age 48, happily married mother of two children aged 9 and 11......thought I was attending an appointment to talk about biopsy results for my "breast cyst". I rarely write anything on this site anymore but from time to time, I still check in and read for hours. I find myself looking for names and stories that I have been following all along. I was inspired by the topic entitled "2012 How are you doing?" and wondered if it might be okay for me to ask the same sort of question? I am attaching a you tube link to my personal video journal (during breast cancer) but I am honestly not sure if the mods allow this sort of thing? :) Certain I will find out shortly!! :) In any event, the video shows PART of my physical journey....at the end of radiation, I continued on with Herceptin and from start to finish, completed cancer treatments and surgeries (NO RECON - chose flat) within 18 months. Today, I gladly share my stories with anyone who wishes to hear them but I ALWAYS caution that every single one of us is as unique and intricate (by design) as our breasts might have been!! But since we all share this common illness, I'd love to know....how are you doing today? What would you like to share with one another at this stage? I still care, still wonder, still feel connected (LOL...albeit, not unlike invisible thread...since I have never met one of you)....and so here you have it!!! I miss you folks, have the best of wishes for each of you and hope you are doing well.

https://youtu.be/dlXnuenojak


Comments

  • Agent99
    Agent99 Member Posts: 118
    edited September 2017

    Hi there,

    I was diagnosed 3/2014 triple positive, lumpectomy, chemo, radiation you know the drill. 3 years later I am a wreck. I have complained to my oncologists so much that she sent me to a psychiatrist. I can't think, really cant think and I used to be quite capable. I can't lose the weight, hurt, heartburn, problems swallowing etc etc etc. I know Im boring you. What really gets me is the depression. I was so happy, and involved before this little journey that I can't get over what has happened. I am grateful to be alive and cancer free (I hope) But I have extensive cording that hurts and so many other side effects that just have not gotten better and NO ONE to talk to. I am still pissed that the oncologist PA sent me to a psychiatrist. I am not crazy, excuse me I am now going to have a good cry. I feel like I have let everyone down no one understands and I think about dying all the time. sorry to be a downer but there you go. Please tell me you felt just like this but you have gotten better


    J

  • MeToo14
    MeToo14 Member Posts: 493
    edited September 2017

    Same. I feel like I can't shake this depression and nobody understands why. I do have my good days where I barely think of cancer but I live under this shadow of death and fear. I get up and live my life. I put on a smile because no-one wants to see otherwise. I have chemo brain, thin hair, slight lymphedema, I can't lose weight. I can't he around babies or pregnant women. I was diagnosed less than a year into my marriage and we were going to start trying for a baby. Now I'm unable to have children and it hurts more than words can say. I resent those who think I should be happy to be alive and should just put it all behind me.

    I'm not the same, physically, mentally, emotionally. I'm only 38 but I feel and look so much older. I hate how I will never be the same.

    But with that said, I am happy to still be here and enjoy my family and friends. I don't want life to end anytime soon. I keep marching and am thankful for what I have, I know it could be so much worse.

    .

  • Agent99
    Agent99 Member Posts: 118
    edited September 2017

    I am so sorry that this awful damn disease took babies from you. you are so young! I am thankful for chemo and radiation BUT it did change me physically, mentally and the doctors don't get it. None of them. I keep being told that my treatment was 2 years ago that can't be what is responsible for my "issues". My poor husband,a great guy, doesn't want to hear it or see it because he can't fix it. I wish someone somewhere would study what is left of us after treatment is over and figure out how to reboot our systems! I am 55. 53 when I was diagnosed, and I was an attractive fit woman for any age but now I have lost all muscle tone and my skin has aged 20 years, I regrew normal hair but 6 months ago it has started falling out it is very thin. I can't believe nobody has done the research for after the cancer is treated!

    I too get up and live my life, I love my family and friends but what is left inside my head is scary!

    One foot in front of the other. Thank you so much for your reply knowing someone else feels the same helps
  • Traveltext
    Traveltext Member Posts: 2,089
    edited September 2017

    PerAugusta, that video link is not working.

    I'm doing so well today, three years post treatment, even though I picked up a second cancer last year.

    But, I'm really sorry to hear from those of you that aren't and I wish that this disease didn't such crappy, differing outcomes that followed treatment. In a way it's worse post treatment, since the security blanket of a team of professionals has been removed and replaced by...nothing very much. My solution was to train as a volunteer counsellor and visit the local oncology ward to help cheer people up. I also telephone counsel guys wanting help with their breast cancer journey. I've spoken to many volunteers who agree that the benefits are two-ways; by talking about cancer and connecting with people in a similar situation, you lighten your load and face up to what has come before you.

    Anyway, I truely understand the different situations for women, and particularly younger women, since my mum died aged 40, leaving four young sons. That was worse for me than my cancer.

    Best wishes for the future to everyone here. Try to believe that there can be bright times ahead.


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2017

    Hello, PerAngusta. I remember you and am glad to hear you are doing well. The year 2014 was my second diagnosis. Ironically, considering the difficulties some of the above posters, I am doing quite well. Only minor physical complaints and enjoying my life and my loved ones. I guess I'm one of the lucky ones of the very unlucky ones these days. Carpe diem.

    Obviously we need more attention paid to life after treatment and to mitigating side effects. Now there's a good place to put some of those pink dollars.

  • Susug
    Susug Member Posts: 193
    edited September 2017

    PerAugusta

    I'm doing good , three years post treatment , even though I also picked up a second cancer last year in my other breast. I do worry a little more after this second cancer but over all I don't let it get to me that much. I lost my twin sister at 57 I was diognosed at 59 and again at 61. Loosing my twin has been the hardest thing my heart has ever gone through. I do come to this board and read a lot and sometimes I will respond. There are so many women that know so much and ca offer more than I can on some of the information but I will encourage and let them know I'm thinking ofly. Thank you for asking and starting this post. Hugs Sus

  • Susug
    Susug Member Posts: 193
    edited September 2017

    ok a couple of more things. Trying to post on here is CRAZY! It does all sorts of weird things I'm married to my high school sweetheart We have been married 37 year. Dated 7 before we married. He has been great through all of this with me. I know I'm in denial about what I have been through. Today I had appointment with md for my yearly talked about some of the normal question drs ask during yearly he ask if I had any stress. Sure.. don't we all. The said well, you have had to deal with your mortality twice.. WTH. I couldn't believe he said that. Came home and ask my husband if he thought I was I. Denial. I just think I want to believe that that I'm cured. Wake up call for me. I guess being in denial isn't a bad place to be it could be worse. In that state you don't worry as much

  • clarrn
    clarrn Member Posts: 557
    edited September 2017

    It has been a roller coaster since 2014! I really struggled after treatment with feeling depressed with the losses (job, body, memory, concentration, fertility, etc). But I am having more good days than bad now, and feeling less worried about my cancer returning. We miraculously got pregnant last fall, but were devastated at the end of January with a silent miscarriage at 10 weeks. My fertility specialist was floored that we conceived and we are now almost 13 weeks pregnant! I am so grateful that I get to take back something we thought cancer had stolen and will be forever thankful for an oncologist who believed in miracles and let us off tamoxifen to try to conceive.

    I hope that this all gets easier in time for all of us. I know that I am so lucky to be where I am at and hope for sunny days ahead for each of you.

  • Agent99
    Agent99 Member Posts: 118
    edited September 2017

    Clrrn

    So happy for you! Your story made me smile this morning!

    J

  • Susug
    Susug Member Posts: 193
    edited September 2017

    Hello Clarrn, congratulations I'm am so happy for you.

  • mollymiller
    mollymiller Member Posts: 7
    edited September 2017

    I too, am an emotional wreck. I don't think I'm crazy, but I sure am depressed, anti-social and scared. I see a woman suggested to me by a friend. SHe is a psychiatric nurse and I was skeptical...Not a doc or psychologist, but she makes sense...I just can't force myself to put into practice the things she suggests. I end up on the couch with a glass of wine. I know I rely on alcohol for numbing myself and I know that it is not a good thing for breast cancer patients, but when the agony hits.....Wine works. I have taken anti-depressants for years. I probably should slowly stop taking them, as I can't imagine they are helping me. I live day to day with bad morning depression, several hours of getting out of the house, then hitting the couch at 4:00 and staying there until bed time. I do fit in 20 minutes of walking, maybe more when it gets cooler and I Am trying to eat healthy foods.....But I am not good at following through, although I sure did show up fro every surgery, radiation, appointment and take the Arimidex faithfully...BUt that's about it. Considering a double mastectomy, probably with no reconstruction. I worry that it could mask future breast problems. 'Sorry to be a bummer. There was a slight period of time, during my radiation treatments that I felt fairly optimistic. The routine of showing up each day, getting my treatment and then running a few errands afterward kept me busy. And if I felt tired I could tell myself it was just the radiation. Now those daily appointments are gone and I don't have the necessity of having to get up and outside for the appointment. I am feeling on my own with no one to answer to ~ My husband and I are like roommates and have little in common now. It's sad...ANd scary...And depressing. Again, sorry for the complaining ~ 'Hope you have a good day

  • mollymiller
    mollymiller Member Posts: 7
    edited September 2017

    This was a blessing to read!!!! There is hope and joy waiting for all of us. Thank you for reminding me!


  • Castigame
    Castigame Member Posts: 752
    edited September 2017

    Clarrm

    Congrats. I am so happy for you.

    Mimi

  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2017

    OH MY GOSH!!! You wonderful, lovely, beautiful ladies have filled this post!!! I'm so glad to hear from you (the sad, the happy and everyone else in between)!!!! I posted this and checked and checked but I sort of gave up and thought I was the ONLY person still holding the torch for 2014!! :) I thought I was the only person who "had not moved on yet". ): Here is the youtube link. My apologies for the mix up. MeToo14....I was sterilized at age 25 (simply in office IUD insertion gone wrong!!) and after nine attempts at InVitro Fertilization, 27 embryos who "failed to thrive beyond 2 weeks" and lots of tears, i adopted two beautiful children as infants. I can't speak for everyone....but I promise you....for me, there is no difference between loving a child I delivered into this world through my body or one (or two!!) I brought into my world with my WILL and MY HEART!!! :) Maybe adoption is for you too? It's a personal decision....but wanted you to know....my heart is with you sweetie!! It's not easy. Life certainly does have a way of seemingly crushing our hopes and dreams. But hang in there my friend. You are NOT alone. NONE OF US ARE!!! Let's all keep in touch for as long as we want/need to!! Why not? What is the point of being on this planet if we don't help one another? And women??? We are THE TOUGHEST on one another (or so it often appears to me - out there in the real world). Let's get better than this!! :) lolol...."this message brought to you by personality number 29.....affectionately known as "the cheerleader"....not to be confused with personality number 74 aka "the downer" and definitely not to be confused with personality number 41....the "I hate my husband WAIT I love my husband and HATE my mailman WAIT I love my mailman and HATE my doctor WAIT I love my doctor and HATE my nurse......" WAIT-lady....or personality number 63 (who hasn't slept in four days due to PTSD) - otherwise known as "the giggler" hehehehehehehehehe OR conversely "the crier" (dependent upon number of hours of actual rest).

    WE.....ARE.....NOT.....ALONE!! I care!!! I honestly care (personality number 55, "the snuggler")

    Have a wonderful day ladies!!! Please keep your thoughts pouring out - this is a SAFE PLACE!!! xoxoxoxoxoxoxoxoxox


  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2017

    MY APOLOGIES to Traveltext....I completely missed the important details about your description (MALE!!!) and made an automatic assumption without fully reading your info - how horrible of me! I only just noticed this NOW!! I cannot apologize enough.

    So this message is JUST FOR YOU!! You, the wonderful, the lovely, the beautiful.....the bc diagnosed member of our 2014 group!!!! I am SOOOO GLAD TO HEAR FROM YOU!!!!!!!

    I cannot apologize enough! SO HORRIBLY INSENSITIVE OF ME!! I feel like a nit-wit!! Let's blame personality number 44 - "the distracted reader" and call it a foolish error that won't happen again!!

    Thank you for posting! Please keep in touch with us!!

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    all good, thanks PerAugust 👌

  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2017

    I am thinking of writing a book or a blog. BUT, I only want to write it if it brings some sort of comfort to others. I am sending a glimpse of the things I would most likely write about. Would these stories/my stories help you or make you feel worse? You are EXACTLY my intended audience....I'm writing this to the people who are trying to recover from breast cancer (the men and the women!!!) and I am writing this because I feel so TOTALLY ALONE and my guess is that you sometimes/often do as well. I want my words to wrap around you and make you feel - SUPPORTED - AND UNDERSTOOD. It is what I wish for myself!! I want...I need...I must find....COMFORT SOMEWHERE! I feel broken and I truly want to feel whole again. Perhaps this is the way? I cannot agree more that, there should be much, much more SUPPORT AFTER BC TREATMENT than yoga or psychiatrists!!! B-tards have no idea that their suggestions SUCK!! Anyway, check your PM Inboxes. And please PM your comments. This message brought to you by....personality number 20...."the writer". Cheers ladies and gents!!!! Whacky me adores you!!!!!! For whatever that is worth!!!!!! xoxoxoxoxoxox

  • Mamaseeta
    Mamaseeta Member Posts: 13
    edited October 2017

    I was diagnosed on Aug 4, 2014 and had bilateral mastectomy on Aug 26. About 5 hours after surgery, everything started to shut down. It's a long story with lots of details that I won't go into here, but it was bad. The doc told my hubby that they only had 30 minutes to turn it around or I would be gone. But here I am!! That little set back caused everything to slow down, didn't start chemo til the end of Oct 2014. I had expanders placed at the time of surgery, had them filled before chemo started, got pneumonia in Jan 2015, a bad infection in the left breast and had to have antibiotic infusions every day for weeks. Finally got he expanders out and the implants in March 2015. Had to have both of them removed, one in April and the other in June 2015...staph infections. I'm happy with my prosthetics, tho. My hubby is my rock which is a great blessing. I started Aromasin in Sept 2015. I have side effects, hot flashes and joint pain that moves around. This week it's both of my elbows. I'm still seeing my onco every 3 months. I am mostly upbeat and positive, but I'm terrified that the cancer will come back. I can't shake that fear, even after 3 years!! What's up with that?? In a lot of ways, I feel like I'm not moving forward. Does anyone else feel that way?? It's good to know that I'm not alone. Other people don't understand unless they've been in the same place. God Bless.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited October 2017

    Hi - Thanks for starting this thread, PerAngusta. t's good to see some very familiar names that I haven't seen in a while. I was dx. in August 2014 and have recently been thinking about some of the women who were going through treatment at the same time.

    I'm doing pretty well. I'm coming up on 3 years on Femara - that's hard to believe! There are still minor issues related to treatment but I'm getting better at finding ways to address them. The emotional impact is still pretty huge but I didn't really get a chance to process all of this until last year so I had a lot of catching up to do.

    I don't come to BCO that often recently as there's so much being said that I'm very uncomfortable with. I look at some of the really dire warnings and negativity (especially about endocrine therapy and radiation) and I can't help but wonder how that affects/scares newly diagnosed women. I'm really, really glad a lot of that wasn't around when I was making treatment decisions.

    Mamaseeta, some women find it pretty easy to move on and rarely think about recurrence. Some of us not. I think it takes a lot of introspection, reflection and maybe some honest self-talk to begin to do so. There's so much more to breast cancer than 'outsiders' realize and maybe that makes it harder to deal with emotionally? At any rate, you're not the only one slogging through that morass - just keep going!

    Best to all of us whose lives changed irrevocably in 2014. Wishing you health and happiness.

  • ErenTo
    ErenTo Member Posts: 343
    edited October 2017

    Thank you for starting this thread!

    I am on the tail end of 2014, received my diagnosis the day after my 39th birthday. I'm doing mostly ok, as long as there are no unusual aches or pain all is good. Work full time, travel a lot, exercise, socialize and generally enjoy the moment. Not sure what the future holds, but I try not to get too caught up in negativity. My future planning has always been vague, so that continues to be the case!

    Hormone therapy has been ok so far. Aromasin didn't agree with me, but tam + zol is not too bad.

  • PerAngusta
    PerAngusta Member Posts: 112
    edited October 2017

    My thanks to everyone who has replied to date. I'm happy to hear from you!! I do feel comforted when I read your posts....the happy things and the sad things....I am not at all offended by anything that you write!! In fact, I feel connected when I come here. AHHHHHH, what a fantastic feeling!!!! It's not perfect here, but (for me) that's the most beautiful thing about this site!!! I feel your joys and your pains and I can absolutely relate to almost everything said!! It makes me feel "normal" in a world where I just don't seem to fit (since 2014). My world has changed and try as I might....I don't think it will ever be the same again. I literally feel like.....a fish out of water.

    I used to feel so badly for those people who had to learn to walk and talk and all of that sort of thing, all over again (say, following an accident or horrible incident). I wondered how they heck they pulled themselves out of that broken place and actually made themselves whole again!!! I'm learning that anyone can heal if they are honest about the extent of their injuries and if they have lots of REAL HELP. With breast cancer, some of my injuries can be seen in the mirror.....but most of them, cannot! I've tried for these past three years to "square peg the round hole" and I have grown tired of it. I cannot and will not pretend anymore. There is no doubt in my mind, whatsoever, that I am STILL RECOVERING and for me....that's totally okay!!! I have good days and I have some really bad ones. I joke that I have a million new personalities to contend with.....AND I DO!!! lol

    By the time I complete my "training" (is that what they call it when people are learning to walk again?) I will see one of those personalities rise to the top and replace the "me" that once was. Because she is definitely, by all accounts, GONE.

    And btw, I'm never sure what people mean by "negative talk". I hear that phrase often on this site and it seems to mean something very different to me than it does to most folks. For me, words are either real or they are not real. Interpretations (i.e not the words) are the things which are negative or positive. Personally, I like your stories and your words....and although they may sometimes make me feel sad or scared or silly or even happy.....the point is...they make me FEEL and they CONNECT ME. We need human life-lines of all kinds and I'm so grateful for this site!! I'm grateful for each one of YOU!!! I'm not kidding!!!!!

    Thanks for the last three years!!! This has been a safe place to come with my cup of coffee and comfiest pj's and just reeeeeaaaaad or write! I DEFINITELY want to start my own blog, as a result!

    Have a wonderful day ladies AND GENTS!!! Or have a crappy one, if that's your "thing" today....I have no judgement either way!!!! But whatever you are feeling, please know that I hear you and I feel you and you definitely matter!!!!! ALWAYS MATTER!!!!! :):):)

    I keep a playlist of songs that are like a soundtrack to my life....lately, I've been referring to this song....check it out and enjoy it!!! It's not a new song. Just a lovely song, in my arsenal of things that inspire and uplift me!! Google "Beautiful - By Marillion"


  • Lolis197138
    Lolis197138 Member Posts: 512
    edited October 2017

    Hi,

    I was diagnosed in March of 2014 went through surgery, IVF, chemo, rads and tamoxifen. I worked full time through my treatment and didn't have many side effects. the first year after dx was very hard and I was living in fear with every pain that I was feeling. Second year was hard too as my dreams of using my embryos were shattered, we considered adoption but now i don't know if it will be possible. i had my annual MRI this August and an intramammary node showed up (thickened cortex) birad 4. The FNA biopsy found normal tissues which is not in agreement with the MRI. I know people had gotten false negatives from FNA so I have an MRI in November. So there years later I am waiting to find out what this single node is. I have no emotions regarding this I only want to know as I am waiting to have my first DIEP surgery. Other than this life is back to normal and the dx of three years ago seems such a distant memory.

    Clarrn congratulations!! wishing you a boring and uneventful pregnancy.

    Lola

  • Flygirlcanada
    Flygirlcanada Member Posts: 1
    edited November 2018

    Hi to all you amazing fighters!

    I was diagnosed with Stage 2 Triple Negative breast cancer on my right breast at the age of 47 in April 2014, went through Chemo, Lumpectomy Surgery and Radiation and got the "all clear" before Christmas that same year. I was a "test book" patient with no unexpected side effects and handled treatments well. All follow up mammograms have been clean. I started working out, lost over 30 lbs, worked on reducing stress in my life, attended a Breast Cancer Survivor retreat (B4BC), met some amazing young women who survived through worse than me and have been feeling great. During my last oncologist visit, she jokingly said "I'm your most useless doctor now, but I still want to see you for one more year".

    Then...about 4 weeks ago I noticed a lump in my left groin area that has since shrunk a little but is still there. My RMT felt lumps in my groin area also, so I saw my family doctor, who sent me to get blood tests and an Ultrasound the next day. Results came back and my Doctor said liver numbers were higher than normal and there are lymph nodes that are swollen so more tests are recommended. Now I am scheduled for a CT scan tomorrow at the BC Cancer Agency.

    Trying to stay positive and hoping everyone is just being overly cautious but also nervous about the outcome.

    Has anyone else been through this? Hoping it' not a secondary cancer!!!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2018
    FlyGirl - I'm so sorry you're going through this. I'll be thinking of you tomorrow and hoping there's a benign reason for those lumps. Take care.

    Hopeful (dx 2014 as well)

  • PerAngusta
    PerAngusta Member Posts: 112
    edited December 2018

    Wow! Happy to see this post is still current. So sorry to hear that you are going through this flygirl! Do you have any news now? Myself, i've been on what can only be described as.....a slide. I'm falling now at a speed I can't seem to control. I attempted suicide 1 month ago....psych ward....did it in front of my children. I repel everyone now...doctors, family, friends. I've reached out for help....not shy about asking or describing my pain! I am not ME since my diagnosis and if I don't find help....real help, no teas, yoga or chats with anyone's imaginary friends (I am not a faith based person or believer....but REALLY wish I could feel comfort from supernatural beliefs)....I will not live much longer.

    My life feels a lot like....a torture chamber. A place where i must pretend to feel happy and fit in....or be banished to my cell in solitary confinement. My only support.....seems to come from this site. 😢

  • WifeWBC
    WifeWBC Member Posts: 53
    edited January 2020

    I was diagnosed December 2013 and had breast removed on my birthday January 2014. Spent several years getting reconstructed and worrying, the latter of which which will probably never go away.

    My hubby makes me feel special still, and my four kids are now 11, 13, 15 and 17. They were toddlers when I was dx. My eldest starts university this year

    We prayed a lot, which helped us. Not for everyone., but a healthy church community is nice to falll back onat times.

    Posted because back in 2014 it crossed my mind I might not see 2020 or beyond. Here we are. Trump is president. Egads

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