Such a scary learning curve

Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 831
edited February 27 in Newly diagnosed
Hi all,

i am just starting to through this process. 3 years ago I found a lump and went for an ultrasound, they found 4 and said they were just fibroadenomas so no further action required. Fast forward 3 years and these lumps had grown and they found a new one so recommended just testing 2 of them. Went and saw a surgeon and he said to just remove them all and that would be it, might have to have some HRT therapy and stop taking the pill. Got the results and the pathologists thought was mucinous carcinoma but had to confer and then came back with papillary carcinoma. Had to have breast sparing surgery and it is now invasive ductal carcinoma and there are areas of DCIS in there too and it is hormone receptor positive which I believe is a very good thing. End result is today is a right sided mastectomy with lymph node removal. The surgeon has told me most likely HRT and radiation afterwards. I’m so scared when the results come it is going to be worse than expected since that is what has been happening since the start and I’m worried about getting lumphoedema. I’m also so angry that this was most likely cancer 3 years ago and I was told there was no need to do anything about it. This is all so scary and new and just trying to work out what everything means (I work in the veterinary industry but trying to figure out the pathology report was a mission). Luckily I have a very supportive husband and great friends and I am trying to be so positive but you cant help thinking worst case scenario every now and then.  Sorry about the lengthy rant - thanks for reading
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Comments

  • onemargieonemargie queenslandMember Posts: 1,022
    Hi there @Kiwi Angel I totally get you beimg pissed off as the year before I was diagnosed they found a fibroadenoma in my left boob “at 3 o’clock” and I asked to get it out and was told it was harmless and not necessary then my tumor was found in the same spot but I was told it was behind the fibroadenoma and if it was cancer previously it definately would of spread in that time so who knows. I took the affected side off then took the other boob off as well as I didn’t want any further uncertainty with my l “cysty” boobs. I’ve had no issues with lymphode,and had 8 lymph nodes removed that were all clear.  It is a daunting time that’s for sure but at least once you get the boob off and get all the results you will know for sure exactly what’s going on and your plan of attack.  Keep us posted. Big hug Margie   Xxx .  
  • brightspacebrightspace Member Posts: 245
    Hi Kiw big huggs sorry you had to join us
    Yes its a crazy time early days yet.....hope all goes well with surgery..remember that final pathology will be after the surgery 
    All the best
    Bright in hope
  • AfraserAfraser MelbourneMember Posts: 1,462
    Wondering what if can bedevil us all - but it's also possible that things might have worked out differently. Some precancer cells never develop. Cancer is so variable - it's possible of course that something was missed, but it's also possible that the outcome you have now seemed very unlikely.  I had the left side mastectomy and axillary clearance over 5 years ago.  All good to date. Lymphoedema is also highly variable - some get it some don't. I did and it's proved very manageable, doesn't really alter anything I do, and preventative care is relatively simple. DON'T look at websites, particularly overseas ones - will just scare you and it's usually not relevant to treatment today and in Australia. Stats are on the side of you not getting it - but you have other treatment to think of first. As @onemargie says, things will look less daunting and frustrating once you have a plan in pace. Great that you have good support. Best wishes for your surgery - that is usually remarkably painless. 
  • SisterSister Adelaide Hills, SAMember Posts: 1,446
    @Kiwi Angel As afraser says, what-ifs can drive you crazy. Unfortunately, we can't go back in time and have to deal with what is.  She's also right in that surgery is relatively easy.  I had a wide excision and sentinel node biopsy just before Christmas and was back in after New Year for mastectomy and axillary dissection.  That was hard getting the call to say I had to have more surgery but the outcome was manageable.  I've now started chemo and will have radiation after, then probably hormone therapy.  One step at a time and trust your team (and if you don't trust your team, think about a second opinion).
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 831
    I am just in the hospital room now. Surgery went well, no nausea post op since the anaesthetist changed the protocol. Had a small dose of endone post op which seems to be keeping pain under control and just having some fruit salad. Met the breast care nurse before surgery and she gave me mi little doughnut pillow and will order my bra and take home prosthesis. Thanks for all your kind thoughts. ❤️
  • AfraserAfraser MelbourneMember Posts: 1,462
    Good for you! Onwards and upwards.......
  • SisterSister Adelaide Hills, SAMember Posts: 1,446
    Don't be scared to ask for pain relief and take the opportunity to ask all the questions you need to - and make sure you have clear exercise instructions.  Apart from that, enjoy having nothing else that needs to be done!
  • onemargieonemargie queenslandMember Posts: 1,022
    Rest up now love and keep us posted how you go. We are all here for you remember that. Margie xx
  • socodasocoda LeumeahMember Posts: 1,653
    Hi @Kiwi Angel wishing you a speedy recovery, don't be surprised if you get a bit teary as prior to surgery everything is so rushed you don't have time to process it all and it is scary stuff!!! Just remember you've just ticked off a huge step so that's one less thing to worry about! Big hugs. Xx Cath
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 831
    Thanks everyone. Didn’t have the best sleep but managed to doze abit - the little armpit doughnut is good. Pain not too bad but I did really gently try and put my hair in a ponytail and got a shooting pain in the affected arm. Learnt a position I can’t move in!  Didn’t realise I would have to have the drain in for 1 to 2 weeks - that will be interesting carting that round in my little bag. Will have to remember to carry my handbag on the opposite shoulder too.
  • SisterSister Adelaide Hills, SAMember Posts: 1,446
    With the drains it will probably depend on how much they're filling. It may be up to two weeks or you may get one or all out before you go home.
  • socodasocoda LeumeahMember Posts: 1,653
    @Kiwi Angel when you have a shower you can hang the drain bag from the shower taps but remember to put it back in its bag before you walk away (ouch) and if you find your drain swinging around a bit get some micropore tape from your nurse and add extra tape to strap it down as it makes a huge difference!! Xx
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 831
    Just saw the surgeon and he said he can see lymph nodes so now I need chemo and  CT scan to see if it has metastasised. F**k, F**k - the news just keep getting worse and worse.
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,634
    OK, the CT is pretty standard--nerve wracking but it, unfortunately, a necessary evil. It's a terrible time for you, wishing you the best of luck. Mxx
  • SisterSister Adelaide Hills, SAMember Posts: 1,446
    Seconding Zoffiel - CT scan is standard just to check.  And it is nerve wracking but painless.  Best wishes @Kiwi Angel
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