Forum Discussion

EllieEmu's avatar
EllieEmu
Member
2 months ago

Settling of the scars from my double mastectomy

I’m not sure where to start with what I want to ask,  I was recently diagnosed with three different cancers in my left breast and chose to have a mastectomy but before proceeding my surgeon decided an MRI should be done which showed another mass in my right breast, so without further testing I opted for a double mastectomy.  This all happened in two weeks.  It’s now five weeks since surgery and I’m wondering about the tightness that’s in my breasts (a bit like I still have a tight fitting bra on) and the small amount of fluid that is also in both flat sides and wobbles from side to side when I walk.   I’ve finished with my surgeon and her nurse and I don’t know if I need to have my chest checked again or if it is just par for the course.  I start treatment for HER 2 positive cancer from the right breast in two weeks.  my how quickly things have changed,  

surgery

6 Replies

  • brightspace's avatar
    brightspace
    Member
    2 months ago

    Hi Ellie Iwas lucky live close to a city breast clinic and to have instant relief as I saw my surgeon twice in a few weeks after surgery to have fluid build up removed from chest wall and  underarm

    Always check with care team and follow up discomfort

    All best Bright

  • Christina_BCNA's avatar
    Christina_BCNA
    Community Manager
    2 months ago

    Hi EllieEmu​ thank you for sharing your story with our community - I am so sorry to hear about the roller coaster you've experienced over the last 5-7 weeks.... that’s so much to go through in such a short time, and it’s completely understandable to feel uncertain right now. The tightness and fluid you describe can happen after a double mastectomy as your body heals, but it’s always okay to check in with your care team for reassurance. You’ve already faced so many big decisions with such courage, and starting treatment soon is another big step. Be gentle with yourself -you’re doing amazingly in the middle of so much change! 

    Please do take some time to check out the helpful resources  Mez_BCNA​ has provided, including the My Care Kit, and please reach out to us on the Helpline at 1800 500 256 if you feel like chatting about anything. Sending you strength and as you move forward. 💛

    • EllieEmu's avatar
      EllieEmu
      Member
      2 months ago

      Thank you Christina, I had to have an iron infusion today to get my iron levels back to an acceptable level and I saw my GP while I was there and she was more than supportive and I came away feeling quite a bit happier with myself after nattering to her.   
      thank you for all your help too. 

  • netney's avatar
    netney
    Member
    2 months ago

    Definitely worth checking in with a nurse sooner rather than later depending on what comes next for you. The 'jiggly' bit sounds like my ongoing seroma I got and still have 8mths later. Although potentially not problematic and may resolve by itself over time, depending on what treatment you have next it might be important to get it some attention before you start, e.g. I had to have mine drained and let it settle a little before they took my radiation treatment chest mapping. Your situation could be completely different to me though so worth talking to a nurse - be it a breast cancer navigator/Glen McGrath nurse, your surgeon's nurse you had available previously or ask to chat to one where you are doing treatment to see if it could pose any issue.

    • EllieEmu's avatar
      EllieEmu
      Member
      2 months ago

      Thank you Netnay, maybe I’m just sticking my head in the sand, I’ll make an appointment with my surgeon’s breast care nurse and make sure all is well before I start my chemo in ten days time.   I guess I’m still having trouble coming to terms with my barren landscape of a chest and all will come good with the goodness of time.  Thank you for your kindness. 

  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager
    2 months ago

    EllieEmu​ Thankyou for starting the conversation. It must be uncomfortable at the moment and we hope you continue to heal well.

    While we wait for others to share their own lived experience, we thought you may find the below resources useful: 

    BCNA provide the free My Care Kit which you can order through our Helpline 1800 500 258. It includes a specially designed Berlei bra and soft form(s), provided through a partnership between BCNA and Berlei. The bra is suitable for the post-surgery period of up to 12 weeks and can also be worn during radiation treatment.

    You should still have access to your nurse post two weeks surgery? Given that they know your medical history and surgical procedure, it would be helpful to chat with them.