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nmrobbo's avatar
nmrobbo
Member
5 months ago

DCIS - normal feelings?

Hi everyone, I was diagnosed in April this year with non invasive DCIS. I had surgery to remove growth, the radiation which finished in August. I worked mostly through the surgery and radiation treatment. But now I am feeling like I am having a breakdown. I am so angry and emotional and this is not me. I am post menopause (I went through early menopause due to surgery to remove an ovary) and I not on any hormone treatment. Is this “normal” to feel angry and emotional? I am seeing a psychologist. But I feel like my whole world has changed and no one quite understands or get what I have gone / man going through. Since April I have had only one week where I have had no medical appointments. I am completely drained. And guidance greatly appreciated. Xo
dcis
emotions
side-effects

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  • Afraser's avatar
    Afraser
    Member
    5 months ago
    @nmrobbo

    I had a different and longer course of treatment, but it’s not at all unusual for an emotional response to cancer to surprise you when reactions catch up. Seeing a psychologist is a good idea. It’s also quite likely that a brush with a potentially lethal
    disease can stimulate any old, unresolved emotional baggage. Your world has changed, your certainties about what life offers and will bring may have changed too and all without any say-so or consultation. Anger is a perfectly understandable reaction.

    But it’s not a helpful one - it can feed on itself, rarely provides helpful insights or ways forward. I didn’t experience such an intense reaction but I went through a period of confusion about who I now was and could be - a really good counsellor helped me find my way through and, more than a decade later and after a short period of treatment, her methods are still useful. The mind and emotions get affected by this stuff too, not just the body. Persevere, be kind to yourself and you can find your future path. Best wishes. 
  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager
    5 months ago
    Moved from activity section for @Jenmcd

    Hi nmrobbo. I am hearing you loud and clear and putting my hand up to say “ yes, this has to be a normal reaction because I am feeling it too”. 
    I was diagnosed with high grade DCIS comedo necrosis in February this year, partial mastectomy in March, and radiation in May. It was a whirlwind of chaos and out of control emotions. Once active treatment had finished, all
    of a sudden it was like a WTF, slam into a wall, what have I have just been through moment. It was a definite post treatment slump I fell into and no one around me could understand how emotionally mind destroying this actually was for me. Months of specialist appointments etc were suddenly over and the expectation I had of myself and others had of me was that I was back to “normal” and then comments started,  “you are lucky it was only DCIS and not invasive cancer”, “ well it wasn’t really cancer you had was it, just DCIS”, “it’s better than the alternatives “ etc etc. I was angry! I am still angry and emotional and post menopausal. I see a Psychologist as well (I am a psychologist and believe me it’s been a tough journey being the client!) and she has been the one person to validate my emotions and say tell me it’s perfectly okay to feeling all this, that I am not and never will be the same person I was pre DCIS & that too is okay. I wish I had some wise words of wisdom for you but I don’t 😢 Just know you are not alone and there must be so many others like you and I with our own unique story to tell that are silent. My DCIS journey continues to unhinge me some days, especially the phantom nipple pain and discomfort from a seroma and swelling that is still lurking. I am sure time will help with my acceptance of what this year has been and how it is shaping the  new version of me, whatever that may look like. Go gently and look after you. ☺️
  • terrianne's avatar
    terrianne
    Member
    5 months ago
    It's completely normal to feel whatever way you feel, and that includes angry or drained or sad or any other emotion - or a mix of them.
    I had a similar diagnosis, high grade DCIS, but slightly different treatment; I had the lump removed, but no radiotherapy because I'll be having a double mastectomy.
    Even if you get the "good" news that "it's only DCIS" (I had a couple of meetings with a surgeon who kept using this phrase, and I wanted to slap him, seriously :s ), it's still a huge upset - suddenly your focus is wrenched away from your regular life to dealing with this thing that just landed on you. You're trying to juggle work, family, friends like usual and then add in medical stuff, which can be unforgiving in its scheduling, all with the spectre of cancer hanging over you.
    And yeah, it often feels like nobody else understands exactly what you're going through.Even other people who've been there - I have a colleague who's had a similar diagnosis a few years ago, and she's lovely, but she's insisting that, because things went a certain way for her, I'll follow the same path - and it's not so.
    I don't have any guidance or advice except to echo @Jenmcd above and say be gentle with yourself I hope you click with your psychologist and that they're helpful for you.  I hope you find space for your thoughts and emotions, and comfort for them and yourself.


  • Frenchbee's avatar
    Frenchbee
    Member
    5 months ago
    @nmrobbo 
    @Jenmcd 
    @    terrianne 

    I felt a bit teary reading your posts.  I was diagnosed with Grade 3 DCIS in February this year four days after my 53rd birthday. 

    I've had what felt like endless mammograms, ultrasounds, MRI's, biopsies, MRI guided biopsies.  I have had three surgeries (so far) since March including a lumpectomy, nipple delay surgery and finally a DMX with diep flap reconstruction.    

    Plus just recovering from a fourth surgery (unrelated unexpected shoulder issues).  I have phase 2 reconstructive surgery still left to go.

    Lumpectomy found 60mm of grade 3 DCIS with comedo necrosis, plus LCIS and no clear margins.  I have a strong family history (mother and sister).  It was strongly recommended to me to have a mastectomy due to the size of the lesion and the high grade rather than another lumpectomy and radiation to clear the margins (which was my preference - if there is even such a thing!). 

    I ended up eventually having the double mastectomy with a huge amount of reluctance, emotional distress, grief and pain.  Mastectomy found another 40mm Grade 3 DCIS (total of 100mm of the awful stuff) plus bilateral LCIS.

    I am still having so so much emotional distress.  I have lost 10 kilos and don't sleep much.  I find I am quite fragile and teary a lot of the time - although it just pricks behind my eyes.  The tears don't actually come.  I wish they would.  I have withdrawn socially and have lost a lot of confidence.  No one at all seems to understand how I feel, so I've just stopped talking to anyone.

    I now don't even feel like I belong in breast cancer support groups because of the whole "DCIS is not REAL cancer" situation.  Even though nearly every major cancer centre website lists DCIS as "earliest stage/pre-invasive/Stage 0 breast cancer".  I don't log in much anymore - I feel like I shouldn't be looking for support in a breast cancer group if my condition is not considered to be cancer.  So that's left me feeling incredibly alone.

    I was never assigned a breast nurse for support, which has increased my feelings of isolation.  I'm so confused why not when I've had such a massive surgery.  I can only assume it's due to the DCIS label.  I've had to navigate this surgery and recovery by myself.  I didn't know where to reach out to get someone assigned to me and have assumed I don't qualify for one anyway.

    I have been left with no breasts, no nipples and I'm still going through a very big reconstructive surgery process.  I'm completely devastated about the surgery. It's not a small thing and even harder to face when my diagnosis is dismissed and invalidated.

    I completely understand that the DCIS prognosis is substantially better than invasive cancer and I want to be very respectful to patients who are facing that much scarier invasive prognosis.  I don't ever compare myself or my prognosis to what they are facing with an invasive diagnosis. 

    My mum died from metastatic disease, so I have a first hand experience of how awful it can actually get.  I will never consider myself "lucky" that I had to have my breasts amputated - however I am grateful that it was identified at such an early stage that I have avoided chemo and a worse overall prognosis.

    I am seeing a wonderful onco-psychologist who is a breast cancer survivor herself.  She said a lot of DCIS patients feel the same way.  She is quite frustrated with the medical world and how clumsily DCIS patients are sometimes dealt with.   

    Quite possibly, the medical staff who refer to the condition as "only" DCIS think they are being comforting, instead they are minimising and invalidating our experience whilst simultaneously recommending very drastic treatments (surgery and/or radiation).  It just doesn't add up for the patients and adds considerably to emotional and mental distress instead.

    Anyway, please excuse the rant - you are not alone at all in your feelings and I hope knowing that is at least of some help.  Very happy to chat (via BCNA messaging or otherwise) if you think it would help to talk to someone else who feels the same way.  Sending you gentle hugs and a lot of empathy and understanding about your feelings xxxx