Newly diagnosed .. Glad I've found a safe place

Hils
Hils Member Posts: 55 ✭
edited October 2019 in Newly diagnosed
Hello everyone,
 Glad I've found a safe place where I  can vent and talk to others that understand.
I had a routine mamogram and they found a large mass or lump,  so I had to have a core biopsy and lymph node biopsy, boy I  dont want to go through that again, it wont hurt they said!😣 I've had my bone scan and now waiting to see the surgeon tomorrow.  Absolutely scared stiff of the results and the plan he has for me, I  want to know but it feels safer not to know.😐
I feel like putting a sign on the front door ...'The carer needs a carer'! For six years I've been carer for my husband who has kidney failure. He's now on dialysis after a failed transplant due to a quad heart bypass! We know the hospital nearly inside out, now we are going to get to know a new set of nurses and Drs. Luckily my daughter is very supportive and is going to come to appointments with us to take notes and remember what I dont.
I've had good and bad days since the diagnosis which I'm sure you will all relate to, what an emotional roller coaster, I feel so sorry for me ,scared of the pain to come and the disfigurement. This only happens to other people! 😢
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Comments

  • Sister
    Sister Member Posts: 4,961 ✭
    Welcome @hils - glad you found us.  In some ways, this is the worst time, trying to absorb the shock of the diagnosis and then waiting to know what the treatment plan is.  Treatment can be challenging but at least it's a plan.  And you're right - the biopsy can bloody hurt - mine sent me through the roof as the local hadn't worked over the whole area.  It's good that you have someone you trust to go to appointments with you as it's quite likely that much of it will go straight over your head at the moment.  Depending on your treatment plan you may want to talk to someone at the hospital about the possibility of accessing help with your husband's care and around the house.

    And it's absolutely okay to feel sorry for yourself - it's a monster of a disease but we're all here.
  • Blossom1961
    Blossom1961 Member Posts: 2,517 ✭
    Hi @Hils. Sorry you’re here, but welcome. As Sister said, in many ways, the beginning is the worst. And feeling sorry for yourself may came in waves. I found it easier to just roll with it. I made the most of the good days and hibernated from people on the bad. We all deal with it differently. My  biopsy anaesthetic didn’t work either the first time. I had to have two more on different days and the terror this brought on caused them to take extreme care. I hardly felt it in my two following procedures. Big hugs.
  • kezmusc
    kezmusc Member Posts: 1,553 ✭
    Hi @Hils,

    Welcome lovely.  I see you're up in the wee hours, as is expected, and tends to become a regular occurance.  The brain certainly likes to think of all the awful things it can come up with at night.  The start is just the pitts.  I remember being absoulutely petrified to find out the results of my CT.
    Once they have a handle on where it's at and the plan gets put in place you'll feel a little more in control.  Ask a zillion questions and remember this is your gig.  If you're not happy (stupid word in this situation) say so.  You tend to just get swept along a little at the start. 
    There is no right or wrong way to get through this shit show.  Just one hour and one day at a time.  Distraction is probably the best thing. Keep busy if you can.
    It's not called the roller coaster for no reason.  The up and down swing of emotions is completely normal.  We all get it lovely and everyone is here for you.

    xoxoxoxox
  • youngdogmum
    youngdogmum Member Posts: 250 ✭
    I stupidly went to work the day of my bone and CT scan results. Ha. Barely got anything done all day. I was on actual edge waiting for the appointment and then when he said they were clear I burst into tears. 
    We’ve all been there - you will feel better after today knowing a plan! Best of luck for the results 🤞🏾🤞🏾🤞🏾
  • arpie
    arpie Member Posts: 8,198 ✭
    Hi @Hils .. So sorry to see you here, but you are in the right spot for support and info from those who’ve gone  before you!    Yep, the waiting sucks bigtime.  You never really get used to it.

    You’ve got a lot on your plate - definitely see a social worker to make sure you are getting all the help you can with hubby specially once you see the surgeon and have an idea of the timeline!

    We all know the fears of the results ... but I told myself, “It is what it is and no amount of worrying will change whatever the result will be” ... so I went fishing every day whilst waiting!  LOL. Worked for me.

    I am glad your daughter is going with you To meetings etc .,... I recorded mine on my phone too, as it is easy to miss things, as you ponder what they’ve said .... and miss the next bit!  Grrr 

    Once you have your plan, it will be strangely comforting .... and I then found the surgery to be way less horrible than my overloaded brain had thought it to be!

    take care, big hugs .... and all the best for tomorrow.  Xxx

  • Caz1
    Caz1 Member Posts: 382 ✭
    Welcome to the club @Hils, also sorry you're here...but please know what a life support it is and how wonderful the sisterhood on here is! 

    Im relatively new, diagnosed in July after a routine mammo too. 
    lt'd be a cyst everyone said :#. So a couple of biopsies and cans later here I am. 
    The waiting bit really hard, once you have a plan and get more info, (from this page is safest and best, ) it's easier to deal with. 
    Hang in there. I find it best to just take one wave at a time. Sending hugs. X
  • Hils
    Hils Member Posts: 55 ✭
    Thankyou to you all for your kind comments. 
    Well my bone scan was clear so some good news to celebrate! 
    My cancer is 7cm stage 2, and the surgeon thinks it was there for 2 to three years....I nearly fell off my seat! So much for regular mamograms, two years is too long to wait! It may not have shown up as they said I have dense tissue probably due to HRT. I feel like I have done this to myself because I was on HRT. The cancer is also hormone receptive 😐. So it was recommended I had a full mastectomy and full lymph node removal. I wanted a recon at the same time but he kind of talked me out of that until all was finished...chemo and radiotherapy.  Still not happy with that but I suppose I'll get used to it. I feel like I didnt have enough info on recon then and the appointment was rushed. I'm thinking of ringing the breast care nurse to see if I can have a talk with her. I dont have the mri till next friday and the op is planned for the11th of the11th......wont forget that date!
  • Annie C
    Annie C Member Posts: 853 ✭
    @Hils
    Please don't beat yourself up over HRT. 
    My older sister was on HRT for over 10 years.
    She is 12 years older than I. 

    When I asked my GP for HRT some 15 years ago , she was definitely on the NO side. This was at the time when the link between HRT and Breast Cancer was all over the media and so I did not take HRT.

    Guess what?

    No Breast Cancer for my sister who had many years on HRT, but I was the lucky one. How ironic was that? My cancer was also hormone receptive.

    I guess what I am trying to reassure you with is that none of us really knows, not even the medical profession. 



  • Hils
    Hils Member Posts: 55 ✭
    Thanks Annie C, I  hope your doing ok now. Saw that you live in the Kimberley, been there a couple of times, its an amazing place!
  • kezmusc
    kezmusc Member Posts: 1,553 ✭
    @Hils,

    It's a common thing to try and find a "reason" that it happened to you.  What you did to yourself to get it so to speak.  All the scientists and medico's still don't know so please don't beat your self up.  There is no room for guilt in this little trip.  This thing does not discriminate.  I work in a hospital on the surgical ward.  I have seen everything from a 16 yo old girl to a 92 year old man deal with breast cancer.
    You did nothing wrong lovely.
  • arpie
    arpie Member Posts: 8,198 ✭
    Great that the bone scans are clear @Hils!   

    Do you know what type of BC it is yet?  Lobular, Ductal etc?  

    Where abouts are you - Town/Region - then members can point you towards specific support groups in your area.  You can add it to your profile.

    Definitely don't blame yourself re the HRT or any other reason for 'getting it' - I've always reckoned we've all got cancer 'in us' and it takes a particular 'event' to kick start the uncontrollable cell reproduction (like a knock, a broken limb, or a range of medical conditions - possibly even a reaction from drugs we've taken, or food we've eaten that has been sprayed by herbicides.)  They really don't know why any of us get any of the cancers - other than smoking definitely influencing lung cancer.

    Oh no - the 'dense breast tissue' issue again!  :(    I am currently at loggerheads with BreastScreen NSW as I have been demanding that they advise their clients if they have dense breast tissue - as they can see it on the screen then & there.  Not telling them that their mammograms are 'compromised' often results in the tumours being found much later, much bigger & possibly nastier than if detected earlier by ultrasound.  I've recently received a letter from them asking me NOT to post on their Facebook page as I frequently mention the need of ultrasounds - as well as pushing the 'Free from 40' aspect, as they continually keep advertising 50-74!!    I've been advised to contact  cancerscreening@health.gov.au as the best way to direct my concerns to BreastScreen Australia at the Department of Health - so will be doing so.

    I come from a family with absolutely no cancer history - and I also have dense breast tissue - my tumours were found 2 years ago by my GP just 4 months after a totally CLEAR mammogram.  So this year, I asked BSNSW to review my mammogram prior to the detection to see (if in hindsight) they could detect the tumours - and they gleefully told me that I didn't have cancer!  I couldn't believe it!  They copped a real blast from me regarding the wording of their reply to my review request!!

    Breast Screen WA actually advise their clients with dense breast tissue that they need to have an ultrasound as well as (even instead of) a mammogram, as dense breast tissue shows as 'white/occult' on the mammogram - as does the tumour.  So 'white on white' = non detectable!  :(  

    I am a carer too - my husband had most of his stomach removed due to cancer in 2010 and now also has dementia, diabetes and is an anaphylactic!  Never a dull day!  Yesterday he trimmed our orange tree almost back to the trunk  :( 

    Take care & all the best with your appointments xx
  • Sister
    Sister Member Posts: 4,961 ✭
    It's amazing how many women out there have had bc that you might not have been aware of.  I've had a few at work come up to me quietly and tell me they've been through it.  Lobular is a sneaky one and can be very hard to see on a mammogram or ultrasound.  Don't stress too much about treatment at this stage - you'll find out in due course.  There are many factors which influence the type of treatment that will be suggested.  For me, it was the lot but for others it hasn't been.
  • arpie
    arpie Member Posts: 8,198 ✭
    Gosh - shame that you weren't advised of the dense breast tissue & need for an ultrasound!  Had you had many previous mammograms before this one, that found the lumps?  Yes, most of us are now very vocal about telling everyone to  get checked at 40+ or as soon as a lump or different shape/pain etc is spotted - including male breast cancer as well - telling the boys to be vigilant too!

    The waiting really sucks - waiting for the scans, for the results, waiting to see the surgeon etc ..... try & keep as busy as you can as it keeps your mind busy as well (our minds can go ballistic with all this overload of information & general fear ....)  I went fishing most days in between initial detection & the scans, the between the scans & the results - I was out communing with nature - it worked for me.  

    We have some WONDERFUL members in WA @Hils  .... 2 that spring to mind are @JJ70 who is a fantastic lobbyist for ALL things BC and has a Facebook page called Can do at 40 https://www.facebook.com/Can40Do45/ and also @Annie C from up in the Kimberley region who goes to Perth for her checkups - and is a lovely lady - we met up in Darwin a few months ago & had a hoot together with her hubby Ian.

    LOL  Never a dull moment with my hubby - he left his 'jigsaw puzzle light' on all night last night & also checked something in the back yard before going back to bed & then left the back door wide open!   

    I am lobular as well, which is considered one of the trickier ones to find, even if you don't have dense breast tissue as it is hidden in amongst the 'grapes' that are the lobules behind the nipple! I was lucky to just have a lumpectomy, radiation and hormone tablets (and dodged the chemo bullet.)   Some people don't have side effects from the hormone meds - so fingers crossed you will be one of them!!  I was post menopausal, so was already 'depleted' of many hormones!  LOL

    It may surprise you - depending on the level of surgery that you will require - that it doesn't knock you around as much as you 'think' it will.  I know I was!  I even floated thru 4 weeks of radiation quite well (except for hubby falling off his bike & breaking a couple of ribs & HIM becoming the patient instead of me!  LOL)  

    Good on you for getting back to your craft group & finding some immediate support amongst it's members. You'll be able to raise many questions & issues with them (and us) and also get tips - that will  help smooth out the bumpy road.  I was the same with my uke group - I dreaded telling them, as I run the group - and like you - about 6 said 'Me Too!'  They've become my greatest supporters.

    I hope to get my 2 year results today ...... all the best with your hubby - I hope he gets the call soon & that his 2nd transplant 'takes better' than the first one xxx  I have a buddy in Tassie who had a transplant last year & he has a new lease of life - and another in NSW who's about to start dialysis.

    take care, all the best xx

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