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Newly diagnosed with Invasive duct breast carcinoma last Friday

LuliLuli Central CoastMember Posts: 3
Hello,
I was given the links this forum and website by Breast Screen NSW. 
I am not sure what to think right now to tell the truth. I think I am still in shock. Doing a bilateral breast US and CT tomorrow before I see the surgeon on Wed.  Pathology report shows ER and PR positive and from what I understand I will have surgery with lymph notes checked. After surgery depending on what is found, radiotherapy and hormone therapy. I am not looking forward to hormone therapy, really scarred about the side effects. 
I have dense, large beasts and worried that something is getting missed. I would like your feedback. Lumpectomy only or would one consider mastectomy of both breasts to be sure?
Thank you kindly for your feedback. 

Comments

  • Cath62Cath62 Brisbane Member Posts: 895
    Hi @Luli sorry you find yourself here. It is such an overwhelming and frightening experience to find out about breast cancer. 

    Decisions about your breasts and whether to have a lumpectomy or mastectomy are difficult but these ultimately are your decisions after weighing up all the information along with your dr advice.

    I had a grade 3 aggressive growing cancer in my right breast. My surgeon said he could do either lumpectomy or mastectomy but he seemed confident that he could get my 1.8mm cancer out. I decided on a lumpectomy. I have large dense breasts. I had my surgery and my lymph were ok. Relief on some level there. I then started 4 months of chemo, 1 month radium and now hormone suppression. 

    Because of my grade 3 cells and my pathology had a high risk of return my hormone suppression is actually 60% of my treatment. I was diagnosed in April 2020. I had surgery in may 2020, then chem from June to September, radium in October. In Nov 2020 I started tamoxifen. That was ok until this yr when side effects kicked in. My oncologist gave me a 6 week break and then I started on Letrozole. So far not too bad. 

    I know it scary but just get through one step at a time, day by day, decision by decision and go with that. I share my story to show you can change hormone treatment if needed. 

    Our cancers are all unique to each person and treatment is designed just for you so it's hard to compare and advise. Trust your medical team. Don't read Google. Try some exercise and keep busy so your mind doesn't play too many tricks on you. 

    This forum is excellent and I can't recommend it enough. It sure helped me and still does. Best wishes.


  • LuliLuli Central CoastMember Posts: 3
    Hi Cath62,
    thank kindly for your feedback and advice. I hear what you say. I think the waits gets to me.....Seeing the surgeon on Wed will give me more info. Just want it done and know lymph notes are fine. I am not very patient.......LOL.
    Thank you for sharing your story.  Very helpful what you said about being able to change hormone therapy too.
    I will hang on do the tests tomorrow and work to distract me.
    I agree the forum s excellent!!!
    Kindest,
  • Julez1958Julez1958 SydneyMember Posts: 551
    Hi @Luli
    Being in shock is very normal - when  I received  my diagnosis I had an “ out of body” experience where I was actually looking down on myself and the Dr.
    I sleep like a log ( small mercies!) and for a number of days I would wake in the morning and it would take me a few moments to remember things were not  as I before and yes I DID indeed have breast cancer. 
    The waiting is hard but the medical team have a process and when they have gone through it they will have a plan.You will feel a bit more settled then.
    My tumour was ER and PR positive, grade 2 with a low ki67 but was quite large ( initially thought 4.5 cm turned out to be 5.5cm).
    I had E cup breasts , dense as well , my breast cancer surgeon initially talked about a choice of lumpectomy and mastectomy but when the size of the tumour was revealed he strongly recommended a mastectomy.
    I was lucky nothing in my lymph nodes but decided on a double mastectomy for a number of reasons - it’s a very personal decision.
    I followed all the advice of my medical team and am as happy as I can be in the circumstances.
    Not everyone has bad side effects from the hormone therapy and I am grateful there is a drug that can help prevent a recurrence.
    Try and take it on day at a time, avoid “ Dr Google” and have a look around this website there are a lot of great resources on here.
    Take care🌺
  • LuliLuli Central CoastMember Posts: 3
    Thanks for sharing your journey with me. So helpful. I think I thought I could keep 'dodging the 'bulet', I had many recalls after mammograms in the past and all repeat were fine. I felt also that I was a bystander and it was happening to someone else. I will feel much better once I see the surgeon on Wed and book in for the surgery. 
    thank you for your kind words, so helpful. I am sensitive to medications and hope I will tolerate AI or tomoxifen......
    Patience!!!!!argh
    Amazing you had to have a mastectomy! Much to think about.
    Many thanks, <3
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