Coming up on a year post DCIS dx

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Kkubsky
Kkubsky Member Posts: 231

So it's been almost a year since I was diagnosed with DCIS. Time flies when you are having fun. Feeling a bit nervous about my mammo/us that I'll be having in 3 weeks. Guess that is to be expected. Feeling great physically. Still struggling mentally...sigh. I guess I just keep looking for the impossible...reassurance that I won't have to deal with this ever again! It's been quite the roller coaster ride....from the initial shock,melt down and total panic, to getting through the treatments (not too bad), to developing anxiety attacks with some food disorder stuff thrown in, to where I am now. The anxiety is still there, simmering in the background most of the time, but not boiling over as often. I think I have forgotten what it feels like not to have this underlying anxiety. I have been told it gets better. Hope so but I often think that as time passes, chances of recurrence become greater, causing more anxiety. And this dx came totally out of left field for me. It changed the way I think about a lot of things now. I feel less secure, and less optimistic about things than before. I think that part of me is afraid that if I stop thinking about the DCIS, it will come and surprise me again. Not rational, I know. I envy those of us who can get on with their lives...where the DCIS doesn't define them and consume them. Where life is "normal" again. Although I do have to admit that life has become more normal as time has gone by. Just not "normal" normal. I don't know if joining FB support groups is helpful either....Sometimes they make me feel better, but sometimes they scare the crap out of me. But they seem to be an addiction. Anyhow, just some of my thoughts a year later.....

Comments

  • jinmo
    jinmo Member Posts: 82
    edited January 2017

    I am only new, just diagnosed a month ago and waiting for surgery. Just wanted to let you know that someone's out here listening to you. I can't tell you how much it helps me to hear all these different thoughts and feelings from women at different parts of the process.

  • dsj
    dsj Member Posts: 277
    edited January 2017

    It will get easier each year, though I don't suppose it ever goes away. But the odds are so much in your favor (small tumor, aggressive treatment). Try to think about that. And there will be a big exhale when it's over.

  • Tadykins
    Tadykins Member Posts: 12
    edited January 2017

    Kkubsky , you and I are in a similar situation, my 12 month check is coming up in 4 weeks. I completely understand everything you wrote. I do feel nervous too and worried about it coming back, I too, look at other people and think they seem to be taking things in their stride, but are they? Maybe they are thinking the same as us? I must admit I do not think about it as much as I did at the start but now with the check up coming close it is back there formost on my brain. I think we need to control this and not let it control us, as they say things could be a lot worse and we need to get on with living.

    I never heard about DCIS until I was diagnosed with it. I went for a routine mamo and I got a call back, a biopsy and then a lumpectomy a week later. A rolercoaster is exactly how it was for me too. I had a Grade 3 .6 of a cm a lot smaller than yours and no rads, the radiologist said that in her opinion I didn't need it as I had clear margins and dcis is being over treated. I was ok with what she said at the time, but as time went on I started to feel more nervous about that decision as I think having the rads would have given me comfort thinking we done all we could at the time.

    Thank you for sharing your thoughts a year down the line. I am with you all the way in the next stage and hopefully we will be told go home we are fine. Please keep in touch as I will be thinking of you and would love to hear how your check up went. Take care of yourself and stay strong and looking forward to talking with you again soon.

    Tadykins

  • Carrye
    Carrye Member Posts: 43
    edited January 2017

    I can relate. I have now survived 5 years. I had surgery, 33 rounds of radiation and 5 years of arimedex. It has not been easy. But have worked through it, and have a full life with more responsibility and income than before cancer. We can lick this disease and it does not have to define us even though it will change us.

  • Annette47
    Annette47 Member Posts: 957
    edited January 2017

    At only a year out you are still very early in the process. I remember feeling much like you until about the 3 year mark (it was 4 years in November). Then, at some point, I realized I was no longer thinking about it constantly, no longer “sure” it was coming back, etc.

    Do I still get some anxiety? Sure - I have a mammogram coming up in a couple weeks and that always triggers it, but it is much, much better than it was 3 years ago when I was in your position.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited January 2017

    Kkubsky, If it helps at all: I'm 14 years out (cancerversary was in late December) and honestly don't think about it much. I just had my annual exam and will go in next week for my mammo (only on the left as I have bionic boobie on the right now) which is the only time when I still get a bit nervous. I try to get myself updated on what research has been done, what new things the community has found out and generally immerse myself for a short period of time; and then will get on with my life once I have another "all clear".

    It will happen. You will begin to have less free flowing anxiety, you'll find that you sleep better and laugh more. It just takes time and focusing on the positive things that you want to do in your life. It's like riding a bike - you look where you want to go, not at what you're trying to avoid. Trust yourself. If anything were to pop up in the future, you can handle it.

  • lisasamie
    lisasamie Member Posts: 1
    edited January 2017

    I was just diagnosed with DCIS will be having surgery on 1/25 a lumpectomy, the surgeon wants a mastectomy, but I just can't go there at this time. and no radiation for me, another suggestion from the surgeon. I guess I am somewhat nervous. I just want to get back to normal again, I work as an RN intensive care. Hopefully back to work 2 weeks later.

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Hi Lisasamie,

    Welcome to the BCO discussion boards!

    We're sorry your diagnosis brought you here but we're really glad that you found us and decided to reach out to others going through a similar diagnosis.

    Surgery decisions can be extremely difficult and we hope that the boards will be a valuable source of support and information for you while you figure out the best course of action for you.

    Sending our best wishes to you,

    The Moderators.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited January 2017

    9 days till my 1 yr post dx mammo/ultrasound..... I will lose my mind if it is not normal....and after this year there isn't much mind left to lose....

  • ARCats
    ARCats Member Posts: 137
    edited January 2017
    Kkubsky, I had a good laugh about not having to much mind left. I know the feeling, because most of us do have some sort of anxiety flare ups with our impending exams. Just take it one day at a time and hang in there.

    Best wishes.
  • Kkubsky
    Kkubsky Member Posts: 231
    edited January 2017

    Having a melt down of sorts the last few days. Oddly enough, not about next week's tests, but about my dogs! I am pretty sure I am just redirecting my anxiety and the upcoming 1 yr cancerversary is what is fueling the craziness in my head. Looking forward to a day when I don't have this underlying anxiety all the time....

  • Annette47
    Annette47 Member Posts: 957
    edited January 2017

    I redirect my scanxiety stress all the time too. (((HUGS))). I have a mammogram next week - first one in a year, which is the first time I’ve gone that long since being diagnosed. It’s not as stressful as it was in the beginning, but yeah, I’ve been a bit anxious all week.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited January 2017

    I just got my letter from the imagining center at lunch time. Still have scanxiety, but the letter said absolutely no findings (and they're using a 3D now). Yay! It can still happen, even after all these years. It just seems to be quicker to pass once I get the "all clear". Good luck ladies

    Happy

  • Kkubsky
    Kkubsky Member Posts: 231
    edited January 2017

    Went for my 1 yr annual mammo/us imaging today and I can finally breathe again. All normal! And no more imaging till a year from now. I will be seen every 3 months alternating between my bs and ro. No more mo either. Part of me wants to be imaged every month...lol.

  • Annette47
    Annette47 Member Posts: 957
    edited January 2017

    Congratulations!

    I had my annual mammogram yesterday. It’s the first time since being diagnosed that I’ve gone back to a screening (vs diagnostic) one. I’m assuming that since I didn’t hear back from them that I need to come back, all is well, but it is disconcerting not to get while you wait results anymore.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited January 2017

    Annette, I get it. I (sort of) remember when I used to get frequent follow up scans and immediate reassurances. Now, I 'm just one of the masses going to get annual screenings and get a letter in the mail like everyone else ;) okay, that is a bit of an exaggeration, I do get a bit of extra care while I get my scans when the realize I'm only getting one side done and why, but the lag in getting a letter vs hearing right away that it looks clean is definitely disconcerting. Good luck!!

  • Kkubsky
    Kkubsky Member Posts: 231
    edited January 2017

    Yes it is nice to get results right away! I was so nervous I was shaking beforehand. I am so exhausted from the emotional stress. I hope I get a good sleep tonight. And I hope I can stop thinking about this for at least a little while!!

  • RDA123
    RDA123 Member Posts: 100
    edited January 2017

    glad you got good news!! I'm right there with you! Coming up on a year. Had MRI Monday, all clear 😀 Mammo in acouple weeks.

  • Lindabirdd
    Lindabirdd Member Posts: 6
    edited January 2017

    Kkubsky, we have very similar dx and timing. I have my first mammo next Tuesday 1/31 since my surgery and rads. I had gotten to a point where I was not thinking about it too much but of course, now nervous and anxious once again. It will be another 3D. I wonder if it is routine to have your tests read the same day if previously diagnosed? I just don't want to think about going home and waiting again for results. I hope I am totally surprised and don't have to have any second imaging but my history is such that I almost always have been called back. Cystic, high density, biopsy for fibroaedenoma in 2009 and finally DCIS in 2016. I also worry because of being hormone negative with comedonecrosis and grade 3. I need to think more positively. Just can't wait until it is over. I have plans to go to Hawaii in April but will not buy my airfare until I get an all clear. I was in a FaceBook group for DCIS until September. I was addicted to reading it every day. SInce I dropped out I have been less anxious and it def helped me not to think about it all the time.

  • Annette47
    Annette47 Member Posts: 957
    edited January 2017

    Lindabrrd - I think whether you get a diagnostic (read while you wait) or screening depends on the policy of your imaging center. Most will do diagnostic for at least some time after diagnosis. My center used to be 5 years, but then 2 years ago changed to 3 years, which is why mine last week was a screening (it’s been 4 since diagnosis). I’ve heard of other centers though where you get diagnostics for the rest of your life.

    I found that it took a couple years before I wasn’t thinking about it all the time - at only a year out you are still in the early days. ((HUGS))

  • Kkubsky
    Kkubsky Member Posts: 231
    edited January 2017

    I have had my share of call backs in the past. Never found anything to be concerned about....until last year of course. My boobs have always had cysts and they are dense. My dog accidentalIy bit my boob and gave me a hematoma once. I even had mastitis twice...once when I nursed my baby and then just randomly years ago. That was a fun time...my ob/gyn was in red alert mode until it was established that it was an infection and not IBC! So it was very nice to get the results right away yesterday. Even the few minutes seemed like forever.

    I have actually had a great thought pass through my mind today....for the first time since my dx....Maybe it really is gone! I haven't allowed myself to think that before. I just obsess over recurrences and new primaries etc. So it was so nice to actually have this positive thought. Hope it lasts till next year when my next imaging is due!!!!

  • Lindabirdd
    Lindabirdd Member Posts: 6
    edited February 2017

    My mammo was done yesterday and it was a screening only. It was 3D again which is good but now I am waiting to hear my results. My insurance will pick up the cost of a screening 100% so that is good. The mammo did verify that my biopsy clip is still inside my breast. It was not knowingly removed during my lumpectomy. So now I have two in that breast. Oh well.

  • Annette47
    Annette47 Member Posts: 957
    edited February 2017

    Lindabirrd - I was under the impression that the clips had been removed during my lumpectomy as well, but at my mammogram 2 weeks ago the tech mentioned something about 5 clips. I didn’t ask (and forgot when I saw the surgeon today) but maybe they put new ones in to mark the area of the lumpectomy? I have no idea, and this tech was the first person to mention them at all!

  • Lindabirdd
    Lindabirdd Member Posts: 6
    edited February 2017

    Annette47 - I got my results about an hour ago from my MO and all is NORMAL!! Happy Dance Time! She stated in her message to me that they do not order a diagnostic unless there is "something concerning that we are evaluating." I did have the 3D again. At least now I know going forward.

    My surgeon told me right up front that they did not find the biopsy clip and that maybe it had come out on a surgical instrument and it just was not seen. She spent extra time looking for it during my surgery. She felt really bad about it and now it is verified that it was not removed.

  • TrmTab
    TrmTab Member Posts: 832
    edited February 2017
    The good news is today I had my first "regularly scheduled" mammogram since this all started in Sept 2015...and I was given the all clear on my remaining R breast! When initially diagnosed, I had so many tests between Sept 2015 and Jan 2016, my MO wanted me to wait a year before another radiology test to that is why it is now...While I posted this on another board, I started Arimidex ahead of the L-MX...and the pathology at MX was that the DCIS area had shrunk...given the clear mammogram makes up for a lot of the aches and pains of the Arimidex side effects!
  • Annette47
    Annette47 Member Posts: 957
    edited February 2017

    Congrats to everyone who has gotten an all clear lately! (Myself included ;))

  • MARIONSGIRL
    MARIONSGIRL Member Posts: 59
    edited February 2017

    I had my first post treatment mammogram in September 2016 and I was very anxious. It was normal but the radiologist said due to scarring from surgery and radiation, he wanted me to have another one next month. After my mammogram I was called into a private room and I assumed the worst - kind of like when my Dad died and the doctor had to tell me the news! I do think about the breast cancer a lot especially since I have side effects from hormone therapy - Aromasin. I feel much stronger mentally if not physically. I love my medical oncologist and he is great in answering my numerous questions.

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