Forum Discussion

itsjustmeuc's avatar
itsjustmeuc
Member
2 months ago

Just diagnosed IDC HR++ Her2 low mulitocal, still awaiting further tests and freaking out!

Hi all nice to meet you all but wish it were under better circumstances. I have just been diagosed earlier this month for a check up that I thought was going to show nothing so I was really thrown. I have a least two 1.5cm lesions and a number of smaller ones they are not sure about yet. 

Just met with the breast team yesterday for my first appointment. They were all lovely but not much info yet as they need to run more tests. They did two more biopsies of lesions not done initially and also ordered a bone and CT scan as well as an MRI. I was expecting teh MRI as I have Very dense breast tissue. I was not expecting the bone and CT scan, which they said are staging scans, as given the size of the lesions I thought I was considered early breast cancer. She reassured me this was just standard practice for lesions over 1cm but I have been in a tail spin since worrying it is already stage 4.

I have a 9 year old son, his dad is completely unreliable and probamatic so does not and will not be living with us anytime soon. I havebnt even told him about it yet as he's not in a potisiton to do anythign right now and it would just cause more stress. I am the sole provider for us and all I can worry about is what happens if I go down. Who pays the mortgage, who puts food on the table. I know this is all way down the line and I keep trying to bring myself back but it's so hard. I am usually a very rational person so this is killing me.

My next lot of scans are on Sunday and Monday and my follow up appointment will be a week after that to give them time to review the results and discuss my case before coming up with a plan. 

On one hand I am terrified it's going to be worse case senario and on the other I am terrified it if is bad news they won't wait until my next appointment and they'll call just before christmas and I'll have to manbage that on my own without ruining my sons day. He's already had to deal with enough of an emotional rollercoaster with his dad I don't want to add more to that.

I thought I was doing ok but I'm crumbling.  Every ache or pain has me over analysing. I know the waiting is the hardest part. I almost think I would be handling it better on my own as it would be ok to fall apart but I have to stay strong for my son. 

anxiety
children
emotions
invasive ductal carcinoma

5 Replies

  • Moomincorn's avatar
    Moomincorn
    Member
    2 months ago

    itsjustmeuc​ - I'm sorry to hear what you're going through. Those first weeks are incredibly difficult when there seem to be more questions than answers and the path forward is unclear. And this time of year adds to the complexity.

    I personally had a single 1cm lesion with a few lymph nodes involved and I was sent for CT and bone scans. It was daunting however I tried to remind myself that the more information they have the better targeted to my situation my treatment will be.

    Do you know who the scan reports will go to? I wonder if you can ask them to hold off providing the results until your appointment after Christmas. A few days is unlikely to make a difference to your treatment but it will give you a chance to breathe and spend time with your son.

    Do you have a Breast Care Nurse you can contact to discuss how you're feeling? I found mine very knowledgeable when I asked about why certain steps were occurring. Or the BCNA helpline - here's some information about their their holiday hours and alternatives if you would like to talk to someone: BCNA's 🎄Hours & Support Options

    Take care.

    • itsjustmeuc's avatar
      itsjustmeuc
      Member
      2 months ago

      Thank you! The results will go to the breast team I belive though they will probably copy in my GP. That's a good idea to go to the nurses, I didn't even think of that. I can ask them what the process is if they find anything and let them know I don't want to be called before christmas. 

  • Suki's avatar
    Suki
    Member
    2 months ago

    Hi itsjustmeuc​ 

    Sorry to hear of your diagnosis.  You are in the worst period for stress right now - it will get better once you have a treatment plan in place.  As Moomincorn​ suggested, talk to a BC nurse to ease your mind or ring the BCNA helpline.

    All the scans are normal procedure, so try not to think the worst (although I know it is hard).  Your team are just trying to get the most info so they can treat you in the best possible way and there are some excellent treatments available now.  Try not to Google (especially HER2+) - most info is very outdated and will cause you more stress.

    I was diagnosed on 9 Dec 2023 with stage 2 Triple Positive (HR+ & HER2+) - my tumour was 2.5cm.  After all my scans, I completed 6 rounds of TCHP neoadjuvant chemo/targeted therapy.  I then had surgery and followed up with anti-hormone therapy and Herceptin.

    I had two teenagers at home and worked part-time.  I continued to work through treatment, but took 3 weeks off for surgery.  My work was very accommodating and I had plenty of sick leave available, but found it was good to have something other than cancer to think about.

    All the best and let me know if you have any questions xx

  • Tri's avatar
    Tri
    Member
    2 months ago

    Hiitsjustmeuc​ sending you big virtual hugs for the ordeal you’re experiencing. Lots of good advice up there - this period when the data about you is being pulled together is the hardest because of the uncertainty about exactly what your treatment plan is going to be. Have you tried the BCNA helpline? Also, once we are past the Christmas NY inevitable closedowns you may be able to be put in touch with advisors who can support you with managing the financial impact that pausing or reducing your work hours might cause.

    https://www.bcna.org.au/resources/articles/financial-supports

    in my case I had triple positive ILC and the treatment was over 14 months, I remained working but only very part time.

    Sending you big hugs, it’s just not the news anyone wants to hear let alone at this time of year. Sending you encouragement to hang in there during this waiting - we feel your worry.  

     

  • Christina_BCNA's avatar
    Christina_BCNA
    Community Manager
    2 months ago

    Thank you so much itsjustmeuc​  for sharing what you’re going through. What you’re feeling right now is completely understandable. Getting an unexpected diagnosis, being sent for scans and then waiting for some clear answers while trying to stay strong for your son would shake anyone. 

    I'm so glad you reached out to the Online Network for support and have recieved so many replies already - that's what i love about this community! ❤️

    As we’re closed over the Christmas break, please continue to reach out to this community, especially over the coming weeks. You don’t have to sit with all of this on your own, and it’s absolutely okay to be vulnerable here. One step at a time, reach out when you need to chat.