Lack of Concentration: Brain Drain after Dx

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Danavice
Danavice Member Posts: 14
edited December 2020 in Just Diagnosed

Hey there, first time poster although I have been lurking for a couple of days. Two weeks ago I was diagnosed with DCIS Grade 3 with Comedonecrosis, multifocal in my right breast. My breast density is BI-RADS D and two years ago I had a lumpectomy on Left Breast for ADH. Because of the multifocal diagnosis, breast density and history of ADH in left breast, my surgeon is recommending mastectomy, minimum unilateral but i am to consider a bilateral (which at this point I am leaning towards). Additionally, she has ordered an MRI to ensure that they are not missing anything else due to the extreme density of my breasts. My MRI is not scheduled until 30 December (scheduled 7 days after my next period) and my surgery is expected to be scheduled towards the end of January, with my final pre-surgery consult with surgeon scheduled 5 Jan (so long as she has the images by then). I also have an oncology consult this Friday. Right now I am not interested in reconstruction and will most likely opt to go flat.

I am having a hard time concentrating at work, I guess it must be the stress? Everything seems to be moving too fast and too slow simultaneously. I'd like to take a week or two off of work to absorb and process, but I feel like maybe I am overwhelmed without reason and playing up my stress in my head. You know, worried that I am too being self-absorbed and that other people would react with much less stress. And I also keep in mind that my biopsy was DCIS, not invasive cancer, so I also feel guilty that I am so stressed about everything when other women have a much, much worse diagnosis. I don't think I am stressed about cancer, but this is a major body modification, and depending on the MRI there could be follow up as well. I feel like I have lost control over my calendar and my healthcare. It's taking up some of my head space, but I am worried that maybe I am thinking about it too much? Do most people get the diagnosis, the recommendations from the consults and then move on until the surgery? Am I too focused on this? I am not thinking about it 24/7 but it seems to be lurking in the back of my mind constantly right now.

Comments

  • MountainMia
    MountainMia Member Posts: 1,307
    edited December 2020

    Hi Danavice. Sorry you are here and facing this. You are reasonably worried and stressed. Please don't ALSO worry and stress about being too worried and stressed! It is like feeling guilty for feeling guilty. No good comes from it. Do what you can at work. Try to mark out 10 minute intervals to focus on one task. "For the next 10 minutes I'm just going to work on _______, and then I can worry some more." If you keep doing that, you might be able to up your focus and productivity. If 10 minutes is too long, just push through 5 minutes at a time.

    And you're right, it IS moving too fast and too slowly at the same time. Mostly, it's too fast. The DCIS is a problem, but of course it is not in itself dangerous, so there is no harm at all in the wait.

    Good luck. Keep us up to date.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Welcome Danavice! I absolutely agree with Mountainmia.... If you didn't have worry and stuff swirling in your mind at this point it wouldn't seem as reasonable as having these things. Our diagnosis is similar than different. I was diagnosed with DCIS Grade 3 with comedo-necrosis as well and extreme breast density. Initially a 3 cm area by diagnostic mammogram, then near 5 cm by MRI which ultimately reduced to 1.2 or 1.5 cm of Grade 3 DCIS with comedo necrosis upon surgery pathology. The other 3+ cm was a mix of lots of benign and precancerous stuff. Diagnosed July 21 and surgery August 31.

    Your worry about worry.... I am quite grounded and though I can get rattled I've been through too much in my life to get rattled for long by much. Getting my diagnosis by phone while out of town and in a large entry way of Cleveland Clinic with a 4 hour drive back - welp - that was a lot.... The next couple of weeks was a myriad of gathering information about my diagnosis - I had no idea what any of this stuff meant. I also was starting to have related appointments, deciding on a 2nd opinion and making those appointments, figuring if and how I could be alone right after surgery and what were the (limited) options there due to COVID, etc. all while working half-time and dealing with several other medical conditions due to autoimmune issues. It is a lot to wrap one's head around - we all have other things we are dealing with or managing when getting news like this, or possibly other buttons getting pushed by such a diagnosis.

    Give yourself a chance to take it all in, breathe, take some walks, stick with sites that offer information relevant and helpful to you about practical and coping measures and most of all take it one step at a time. The latter could mean do your best just to focus on one appointment at a time, or one morning/afternoon/evening (or less) at a time, etc. This is pretty much the most difficult part. You will see on this site in other places once you make a decision about surgery type and have these other initial appointments behind you, you will just follow the plan and be able to do so.

    Obviously surprises can arise for some. Fortunately I did not have any - my sentinel node showed no cancer. Recovery can vary for folks though again if you read on this site most do well. I was overnight in the hospital just for a night. Pain was minimal though present along with other weird discomforts. I developed cording a few weeks after surgery or so and am still dealing with that though it is much better and I keep perspective on that. My range of motion is not limited - it's just tight with certain movements and feels weird. The surgery will leave some side effects like that even without cording. Much of that likely improves for most and some will likely remain - that is big surgery. I chose no reconstruction as well for reasons you'll see in other posts. I go flat as well. After being fairly large for so many years I love the freedom - I actually rarely even think about being flat anymore - it just feels "normal" at this point I suppose..... Please keep us updated on your process.

  • SuQu31
    SuQu31 Member Posts: 160
    edited December 2020

    Danavice,

    Please, please do not feel guilty for your thoughts. This is a major change in your life, so it is normal to be a little overwhelmed. As you will see from my signature, we have a somewhat similar diagnosis. I say somewhat, because you will find that there are so many individual differences in the cancer itself, but also in the women who are diagnosed, and not just physical- we all carry our prior health issues, emotions, family situations and history into this, and it impacts every part of our lives.

    I was in a daze until my surgery. My MRI showed reasons for concern of spread (which was fortunately not the case), but when you read the word “metastatic" in your MRI report related to lymph nodes, or have to get an ultrasound for a cyst on your liver (mine was benign), you are just plain scared. And even in the best case scenario, it's new, frightening and you just want to get on with it and get it out of your body!

    One of the things that surprised me was that I didn't realize my extreme need for control until this happened. I joke that I would have performed my own surgery if I had been qualified! I tried to channel that into preparing myself for the surgery by reading and doing what I could to understand the outcomes, but more by doing things like getting the house ready, preparing my family for what was coming. It gave me something to do. And I caught a nasty cold that turned into a sinus infection that I thought might delay my surgery even more, so I was terrified that it would not happen as planned. I was a basket case and had difficulty concentrating on anything.

    All that to say, please don't feel alone. I am typically a rational, reasonable person (although an emotional one), but my reaction surprised me. My husband and I agreed that during the diagnosis and waiting for surgery, we finally began to understand the people who seem to be wandering around Walmart (or wherever) in a daze- maybe they are waiting for test results, or just received them, waiting for surgery, waiting, waiting. We became those people, and now we have much more empathy for what they may be going through.

    Try to find something you enjoy and immerse yourself in it- reading, movies, music, exercise. Please keep us posted on how you are doing

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2020

    It's possible that if you take time off work, you'd worry more because you'd have fewer distractions. Try to do some fun things! It's tougher with Covid restrictions and possible bad weather, but you can still watch silly movies, or get tickets to live-stream concerts, or, if the weather cooperates where you are, go to a park for winter walks. It'll help the time pass and relax your mind.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited December 2020

    I am sorry you are going through this I agree with everyone else. It is so hard we all at especially during the "waiting" phase" of things. Try to do something you enjoy, read, do a craft, exercise any way you can. (indoors at home if cold outside). Sleepless nights are not good for your mental health or physical health. Best wishes for an easy recovery.



  • Danavice
    Danavice Member Posts: 14
    edited December 2020

    Thank you so much for your stories and kind words: after reading your similar experiences I feel less scattered, more "normal". Feeling pretty isolated already with the COVID lockdowns and this just sort of compiled onto it all, making it so easy to get lost in my head. This forum really breaks me out of that woman-as-an-island feeling.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    You're definitely not alone here so post as you need to... plenty of support here...

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