Everything seems to be wrong

lovemoon Member Posts: 38
I was diagnosed with DCIS on 8 April. Due to the size of the calcification, a double mastectomy was recommended. And surgery is now scheduled on 20 May. The waiting is hurting me. I have been having some pain in both of my breasts and also under my left arm pit. I’m really worried that what I’ve got is not just DCIS. Suddenly, everything seems to be wrong with my body, I have ringing in my ears, my legs are having pins and needles... 


  • Afraser
    Afraser Member Posts: 4,328
    Anticipation can do really odd things. You’re anxious, probably a bit scared and your body is acting it out. Do you have a breast care nurse you can talk to? 
  • lovemoon
    lovemoon Member Posts: 38
    Thank you @Afraser I don’t, do you know where I can get access to a breast care nurse?
  • Afraser
    Afraser Member Posts: 4,328
    Your surgeon or GP may be able to refer you - or the hospital
    you will be attending may be able to assist too. May be difficult to
    get tomorrow but Monday should be possible. In the meantime remember that while this is all really new and terribly worrying for you, your medical team know what they are doing and will not delay if there is a risk in doing so. Have you got family or friends to talk with? 
  • Cath62
    Cath62 Member Posts: 1,239
    Hi @lovemoon waiting is hard. Our brains can play a few tricks on us too and add to our stress. Can you phone your dr and let them know about the pain you are experiencing. It may be ok and they are comfortable still doing surgery on 20th. With surgery you will have pathology tests too. If there is anything further happening those test results will reveal that. If you have the dcis diagnosis you must have had some pathology results to give that diagnosis. Try not to over think it. It's very hard I know but keeping busy helps, do things that give you joy. Seek support from family and friends. Don't use Google. It just causes stress which you don't need right now. Take in a bit of exercise like walking. It's good for many reasons but also helps with the stress of all this. Take care 💐
  • Julez1958
    Julez1958 Member Posts: 1,088
    Hi there
    yes the waiting is hard - I felt like I had a radioactive beacon inside my breast the moment I was diagnosed!
    My Dr said my cancer was very slow growing and a few weeks wouldn’t change anything but that didn’t really allay my anxiety.
    Also I had a core biopsy and that did hurt for a few days after.
    Once I was being wheeled into the operating theatre I felt a lot calmer .
    Good luck and try and keep busy 🌺
  • arpie
    arpie Member Posts: 7,451
    Welcome to our 'exclusive club', @lovemoon .... so sorry to see you join the club. xx   Where abouts are you (town/region) as we may have members nearby who you could catch up with for a coffee & a chat (covid willing!) CLick on your name, then (left hand side) click on the profile & add the bits.

    Yep.  The waiting really sucks.  And at the start, there is SO much waiting, especially after diagnosis xx  I just went fishing every day in my kayak (one of my favourite hobbies) and it really helped not stress too much.)   This disease mucks with the brain even more than the body, I reckon.  I was a train wreck on the day I went to hospital - and couldn't believe how RELIEVED I was the next day, knowing it had been taken out!!   

    Try not to get ahead of yourself and definitely stay away from Dr Google!  Your medical team will be doing their best to have the best outcome for you ..... Your mind is going a million miles an hour - worrying about the 'what ifs' ...... As the girls have said - try & keep busy doing stuff you love, as it takes your mind off things.  

    I have had tinnitus for decades & it is SO annoying!  Like a canary in each ear, both singing different notes!   grrr. 
    I think maybe you are just more 'aware' of aches & pains & tingles just now, so noticing them more - tho the biopsy site definitely hurts for quite a while (even more than the surgery site in my case!) ..... but make a note of them & tell your surgeon or breast care nurse (they are often the first people you should talk to with any concerns ...) 

    I hope you have good family & friend support as it really helps you thru it all.  Make sure you have someone at all your early appointments too, specially with the surgeon & Rads/Onc - for moral support as well as an extra set of ears too as it is easy to miss bits on the day.  I recorded all my early appts on my phone too, so I could go over them again later if I needed to.

    Feel free to jump onto this thread - we have lots of other areas on the blog that you may like to look at - we love seeing people's gardens & hobbies .... even your pets!!  Down the bottom is a link to what to take to hospital with you .... and questions to put to your medical team xx

    take care & all the best 
  • lovemoon
    lovemoon Member Posts: 38
    Thank you @Afraser @Cath62 @Julez1958 and @arpie Thank you for all your kind words. I have talked to my surgeon about 10 days ago and she has kindly organized a CT Scan for me tomorrow. She was confident at our appointment that I just need to do the surgery and the test afterwards will tell if there’s anymore surprises. But given a 4 weeks’ wait (from the appointment to surgery), all kinds of dark thoughts come up. So, I called the surgeon up and told her I wanted to do something,  and hope that I’ll be more relaxed going  into surgery.
    I’m still working full time, my supervisor and colleagues are all very supportive and working helps to take my mind off silly thoughts. But by weekend, especially on Saturday when hubby has to work (and I’ve decided after the diagnosis that I don’t work on weekends), then, all dark thoughts keep flooding in.
    @Afraser you are right, I need to trust my medical team.
    @Cath62 I had my distress with Dr Google the first two weeks, I no longer go there now😅
    @Julez1958 That’s exactly how I feel, radioactive beacon inside me! Mine is intermediate to high grade DCIS, that’s why it’s also causing me distress. Hope I’ll be calm like you after the surgery.
    @arpie good to know that I’m not the only one with this tinnitus problem. It’s so annoying especially at night when you try to relax. I’ve been doing exercise after work to help me relax (I do hot yoga but am hesitant to go to the studio since the pandemic). My husband is very supportive as well as my family. But in a way, this journey is still very much a journey of my own. I will check out more resources on this forum!
    Will keep you all posted of my CT scan results (another few days of anxious waiting for the results).
    Thank you for the love and support❤️

  • Afraser
    Afraser Member Posts: 4,328
    Not every one can do it, but I worked right through treatment and, like you, found it a terrific help in keeping my mind on the wider world and not dwelling on cancer or treatment. Best wishes for your test. 
  • Locksley
    Locksley Member Posts: 903
    Sorry to see you here lovemoon.   Take deep breaths and one day at a time.   All the ladies have given great advice.   Just wanted to say welcome to the club no one wants to join.   Making some meals for the freezer so you just have to heat them up after surgery is a great idea.  Your hubby can just heat them up and dinner is done. 
  • arpie
    arpie Member Posts: 7,451

    Terrific that you have good support at both work and home!   Well done on the exercising too ..... there will be some reduction of arm movement after surgery - but just follow instructions & don't overdo it too early .... Wise not to attend the studio just yet ..... the 20th will come round quickly enough .... and when you're fully recovered, get back into it.

    Absolutely, night time is the worst for tinnitus ..... with everything going on during the day you don't notice so much - but at night time, it is like the volume has been turned up 150%!   grrr   

    All the best for your CT tomorrow @lovemoonxx. That should give you peace of mind (after the bloody wait! ;) )
  • lovemoon
    lovemoon Member Posts: 38
    Thank you @Afraser yes, work does help!
    @iserbrown thanks, I’ll check out the links
    @Locksley yes, it’s a club no one wants to join, but so good to know that you are all out there! And thanks for the tips!
    @arpie thanks for the good wishes!
  • jennyss
    jennyss Member Posts: 1,935
    Dear @lovemoon,

    from jennyss in Western NSW
  • lovemoon
    lovemoon Member Posts: 38
    edited May 2022
    Thank you @jennyss