Forum Discussion

Taiter's avatar
Taiter
Member
3 months ago

Recently diagnosed and have no idea what's in store

Hello there,

I was diagnosed with High Grade DCIS in mid June this year. So far it is only in my right breast. It's on the right side of this breast, but a recent MRI showed an unknown area on the left side. I am having a US/MR biopsy on this side next week. I am in the public system and extremely grateful for the treatment I have received this far. I still have no idea what's in store. I am very mindful that time is precious to our medical staff and there are other patients who need treatment now, I haven't asked too many questions on the basis that my treatment is undecided. I was informed by the surgeon that there's two paths, lumpectomy, radiation and hormone blockers or mastectomy. When I asked about the radiation it was explained that you go get it, for a small amount of time each day for a few weeks, then you go about your normal life. When I asked about the hormone blockers,  (I am post menopausal, but suffered, and lived with, as you have to, quite severe symptoms through perimenopause for the last 10 years) I was told the dose is really small and I will be fine. Okay, sounds good, too good to be true, but I will take that on board. I am terrified to have a mastectomy.

I am very aware that I am luckier than a lot of people and having access to all of these services is amazing. I do have frustration, I look normal and feel normal, but that will all change soon. I feel guilty that I have stage 0 breast cancer whilst others are so much worse off. I work, I have good support around me. I have only told my immediate family (husband & 2 kids who are in their 20s and my brother) and my 2 bosses, they have all been very supportive. I guess I also feel a bit confused and stupid because I really don't know what is going to happen and don't have answers to questions they have. I don't go down the Dr Google path as that just messes with my brain. I am lucky that I've never really been sick in life, so navigating the hospital appointments and communication is a new challenge for me. I also try and distract myself, not ignoring it, it's always there, but I can't let it consume me.

Sorry for rambling, I know I will be okay, just writing something down and getting stuff off my chest. I've been a bit scared too up until now. Thank you if you read this far. Onwards and upwards šŸ˜˜

Confused

6 Replies

  • Eeb's avatar
    Eeb
    Member
    3 months ago

    Iā€™ve also just been diagnosed with High-Grade DCIS in June. Iā€™m currently receiving care through the public system, but things had been delayed due to the MRI report not being completed on time. When they finially got the results the MRI showed that the mass was significantly larger than what the mammogram detected, so Iā€™ll be having a double mastectomy next Wednesday and also preparing the breast for reconstruction. I'm really scared that they might find something more during surgery next week, as I truly hope to avoid radiation or chemotherapy.

    • May2024's avatar
      May2024
      Member
      3 months ago

      Hi Eebā€‹ Have you joined the private reconstruction group? The ladies in the group are incredibly supportive and with the various types of reconstruction available, I'm sure there would be someone who has had the type of recon you will be having, if you wanted to ask questions.  All the best for your upcoming surgery and recovery.

    • Muccilli's avatar
      Muccilli
      Member
      2 months ago

      Sorry to hear of your diagnosis.  I too had a bi lateral mastectomy 5 weeks ago and my understanding is that chemotherapy is a natural progression after this.  I certainly donā€™t have a choice.  Iā€™ll be starting in two weeks with chemo as tomorrow Iā€™m having more surgery to fix a spot thatā€™s not healing properly from the bilateral mastectomy.  Itā€™s a roller coaster ride thatā€™s for sure.  

  • May2024's avatar
    May2024
    Member
    3 months ago

    Hi Taiterā€‹ I too was diagnosed with high grade DCIS toward the end of last year.  I opted for a double mastectomy and immediate recon.  The DCIS was on the right side of my right breast however when they sent the breast off to pathology, they discovered a larger amount of DCIS on the left side of the right breast, so I was ever so thankful I had the mastectomy.  (My breasts were very dense which apparently makes it incredibly hard to detect cancer) My sentinel node showed no sign of cancer so I didn't require any further treatment which was great.  There are two private groups you could join - the reconstruction group and the remaining flat group to get a better understanding of what is involved if you do need a mastectomy.

    All the best with your journey

  • Muccilli's avatar
    Muccilli
    Member
    3 months ago

    I felt like I was reading my story. To help with some advice I have just had a double mastectomy after to lumpectomies couldnā€™t find clear margins. Just take one step at a time. Listen to your doctors.  Speak with the breast cancer nurses they are wonderful and comforting. I was supposed to start chemo today but tomorrow will have more surgery to fix a site on my left breast that is not healing so chemo has been pushed back two weeks. Just go with the flow. Every discussion the doctors make is in your best interest. I too will need hormone blockers but Iā€™ll cover that when I need to. Letā€™s just take one step at a time.  Lean on your friends and family.  My two adult kids have been amazing but itā€™s also hard on them. My daughter especially who is scared for her own future too.  Slow down your life and just breath and relax. Itā€™s a ride.  

  • Tri's avatar
    Tri
    Member
    2 months ago

    HiTaiterā€‹ I am sorry to hear about your diagnosis- sending you hugs and positive energy. Also, you didnā€™t ramble at all but if you had, no apologies needed here ā˜ŗļø.

    Thereā€™s some really good tips outlined in the comments. I am sharing a link to a guide that is published by Breast Cancer Trials with input from this Breast Cancer Network Australia (ie itā€™s from reputable sources). 
    It outlines the most common treatment pathways and compares them, and foreshadowing what to expect, depending on the breast cancer type you have.

    https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOopxFP6QgD4iJ9LmOoDP4p6DuY837YXoaQBO72pIbn-JDq2EgtMd

    I didnā€™t have a mastectomy, but itā€™s great this network does have a private group you can ask to join and it has many wise and supportive members. In my case my surgeon and oncologist recommended immunotherapy and chemotherapy,  lumpectomy and radiation treatment followed by hormone blockers. Anyway, itā€™s nearly 18 months since I completed all that treatment and I want to share with you I recovered and I am feeling very energised again.

    A couple of things to consider include wellbeing options - I went private but I know our public hospital has an ā€œintegrated cancer centreā€ which offers a lot of allied healthcare links. 

    Once your treatment is underway, and in discussions with your doctors, you might also consider an oncology exercise rehabilitation program if one is available. It was a game changer for me - really lifted my spirits. 
    Wishing you and the other contributors on this thread all the very best.