My journey

I was diagnosed with High risk DCIS (Ductal Carcinoma In Situ) in March 2016.  I had a lumpectomy that successfully removed the cancerous cells and left me 100% cancer free.  I then completed a course of radiation and underwent genetic testing as my mother had died of breast cancer when i was 14.  Whilst wating for the results of the testing I started taking Tamoxifen daily.  

The genetic testing identified that I do have BRCA 2 gene mutations that are hormone receptive.  After many discussions with my oncologist I decided to have a bilateral mastectomy with immediate reconstruction and then hysterectomy.  

During the mastectomy and reconstruction I received a diarthermy blister (blister caused by using a heat implement near the skin) that left a hole in my breast the size of a 20c coin.  The surgeons attempted to fic the breast 6 times with stitchwork before deciding to remove the implant and allow the skin a chance to heal before reimplanting.  When the implant was removed it was replaced with a tissue expander that gradually increases the size of the implant over a few months.  Whilst my skin was healing I underwent a robotic hysterectomy and removal of tubes etc.  

The implant was replaced in November last year however my skin refused to heal and I leaked seroma in high quantities.  My surgeon decided to reduce the size of the implant by 70cc.  I had my last surgery just before Christmas and have had weekly appointments at the hospital since then with acute care nurses visiting me for two weeks post surgery (including Christmas day).  The wound is gradually healing and I should be able to return to lifting things and moving my arms above shoulder height in the next few weeks.

When I was diagnosed I thought it would just be a case of having the initial surgery and completing radiation then I would be able to return to what life was like beforehand.  Looking back at my journey I firmly believe that the diagnosis is the easy part, the hard stuff is the recovery afterwards that doesn't happen easily.  I am now unable to lift anything above shoulder height and not allowed to undertake any physical activity other than walking until my wound heals.  No one ever told me my skin would take this long to heal   

I


Comments

  • iserbrowniserbrown Regional VictoriaMember Posts: 1,839
    @Alisonc46 welcome to the forum!  Goodness you have done it tough by the sounds of it!  Our bodies are complex in their reactions aren't they?  I do hope that you get some comfort from the forum.  There is a wealth of information as you try and navigate your way through treatment and what it all means.

    I assume if you have found us you have received the resource, My Journey Kit, here's a link just in case:

    https://www.bcna.org.au/resources/my-journey-kit/

    We all have a diagnosis called Breast Cancer but from thereon it differs so much and our treatments are all so individual

    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    I am sure as the day goes on others who have a similar diagnosis to you will come along and give you some encouragement.

    Take care and I hope you are on the better side of treatment and improving every day

  • iserbrowniserbrown Regional VictoriaMember Posts: 1,839
    Oh BTW, at present there is a post up if you'd like us to know your birthday, link:

    http://onlinenetwork.bcna.org.au/discussion/15143/calling-all-network-members-when-is-your-birthday#latest
  • SisterSister Adelaide Hills, SAMember Posts: 291
    @Alisonc46 It sounds like you have had a rough time.  I hope everything goes right for you now.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,634
    hi Alisonc46 your post sounds like it has a been an absolute horror time.....
    Do you have the link to the reconstruction group? http//onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
    I am sure the ladies in there will be helpful with things I dont understand I am bilateral with no reconstruction. 
    @mum2jj
  • MollygirlMollygirl Brisbane Member Posts: 199
    @Alisonc46 what a terrible time of it. Big kudos to you for getting through all that. Big hugs and healing wishes to get that fully healed. Xx
  • primekprimek Broken HillMember Posts: 3,735
    What  a difficult time you have had. You've had an unusual experience  (and downright upsetting and frustrating I expect ).  In reality I doubt anyone could have predicted your lengthy healing time. They discuss risks but healing time has probably been as surprising and upsetting for the surgeon also. 

    Lets hope soon you can start getting a life back and stength in your arms again. The YWCA encore program could really help once you are allowed as well as seeing a physio or exercise physiologist to work out a recovery program for you.  Lets hope it's all smooth sailing from here for you. Kath. X
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,155
    Alison, that must be so disappointing. All we want is to get better and to have repeated delays is incredibly frustrating--it can feel like your body is out of control and there is nothing you can do about it. Keep going, you are doing the best you can under very trying circumstances. I hope things start to improve. Marg xxx
  • JoannieJoannie Member Posts: 337
    It can be a long road to healing and recovery, I hope things speed up for you soon. xx

  • onemargieonemargie queenslandMember Posts: 735
    Breast cancer can be so bloody unpredictable hey. Hope you are feeling better soon. Hang in there. Biggest hug. Margie.  Xx
  • jennyssjennyss Western NSWMember Posts: 67
    Yikes! You have taken a hammering. Hope you are feeling better soon. Best wishes from jennyss in Western NSW
  • Alisonc46Alisonc46 Member Posts: 2
    Sister said:
    @Alisonc46 It sounds like you have had a rough time.  I hope everything goes right for you now.
    Thanks :)
  • MollygirlMollygirl Brisbane Member Posts: 199
    Ouch. No wonder your arm has limited movement. X
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,744
    Sometimes it just takes what you think is forever for stuff to heal. I had single mastectomy with no reconstruction and an auxillary clearance but those healed up pretty quick. I had a skin biopsy on my lymphodema arm and it healed quick too but a skin biopsy on the back of my leg took flaming ages to heal and get the stitches out. You just never know.
    I feel for you with your wound during these hot summer days. Stay cool. <3
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,155
    Ouch! No wonder you are over it! Looks like the 'Foob' is a good shape though, so hopefully when everything settles down it will be worth the fuss. Marg
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