Newly Diagnosed Locally Advanced Breast Cancer

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kirstiekoala
kirstiekoala Member Posts: 15
Hello Everyone
I recently got diagnosed with what they thought was DCIS but after all the ultrasounds, MRI, CT, PET scan, and biopsies, the diagnosed me with stage 3, Locally Advanced Breast Cancer. I am 37 years old (hopefully reach level 38 in January), and in June 2023, I found a lump in my left armpit. Not very big. About the size of a grain of rice. I didn't think much of it until a month later, I found a lump under the areola of my left breast. I had found those kind of lumps before in my right breast and got them checked straight away but they all came back as benign cysts. But I did the right thing and went to my GP. Rather than telling her about the breast lump, I mentioned about the lump in my armpit instead. She had a feel and thought it was just a gland until she asked if I had found one in the breast as well. I said yes. Straight away she gave me referrals for a mammogram and ultrasound. But I was so convinced that it would just say it was a benign cyst again, that I put the referrals up on the fridge and left them there....until November. By the beginning of November, the lump in my armpit was big. But the one in my breast didn't feel like it had grown. But I went and got the mammogram and ultrasound done and a few days later my doctor called me back in. I still remember, very clearly, my doctor starting to cry and apologising to me. I should say, my doctor is a strong woman and I have never seen anything phase her but she was crying and I knew straight away the results. Fast forward to now and I am currently waiting to meet my surgeon and oncologist. I'm not expecting to see them until the new year, despite being a priority 1 with the hospital.

My official diagnosis is Stage 3, locally advanced Invasive Ductal Carcinoma. It is ER+, PR- and HER2- (as far as im aware unless i read it wrong). The weird thing is, every female on my mother's side that has had breast cancer (my nanna/mum's mum, nanna's 2 sisters, my aunt/mum's sister) have all had it in their left breast but none of them have had it spread to the left armpit lymph nodes like i have. They were all stage 2. I'm currently trying to get my mum to go and see the doctor because when I got my diagnosis, my stepdad quietly told me that mum hasn't had a mammogram done in 16 years and 18 months ago she noticed the nipple in the left breast has become inverted.

Sorry for the long introduction to my story. I still haven't fully acknowledged what is happening. I hear everything they say and I have read all the reports, looked at the imaging. But I feel like I am numb right now. Nothing is fully registering and I have had some people ask me why its taking me so long to feel something. I honestly don't know.
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  • Mareealso
    Mareealso Member Posts: 30
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    Hi Kirstie, Sorry to hear about your diagnosis! You will find lots of support and information with this group. Like you, I am relatively new having had my mastectomy in Nov 22. I did have to push to get things done in a timely manner though in the public health system. Like you, my treatment choices werent going to be decided until Late Jan or early Feb next year but I pointed out the timeline that had already lapsed.. My appointment has now been moved forward to before Christmas. Please stay in contact as there is lots of wisdom everyone here can share with you!!
  • kirstiekoala
    kirstiekoala Member Posts: 15
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    Hello @Mareealso and thank you for the kind words. I am wishing you all the best on your journey.

    When my GP sent my urgent referral through to the Breast Clinic at the hospital, they emailed her back saying they received it and then told her my first appointment wouldn't be until the end of January (this was at the beginning of December). I don't know what happened, or if I have my doctor to thank, but 3 hours after she got that information, the Breast Clinic called me in and said to come in the next day. so all the tests/biopsies/imaging got rushed through but because of the Christmas break, the hospital is currently on skeleton staff. I can't be angry or annoyed because I understand. Most businesses will close down over the break and I understand that medical staff also want to spend time with their loved ones. But i also know that there is 12 of us, including myself, that have been listed as priority 1, to see the surgeon oncologist. I'm guessing its just a case of finding a spot open. I was warned i will probably only get about 24 hours notice via phone. I was told I would have to have neoadjuvant chemotherapy before anything else but I actually don't know what that is. I have already told my Breast Clinic physician that I want a full mastectomy as all the women in my family that have had breast cancer, only had lumpectomies and it kept coming back until they did a mastectomy. the physician has been trying to talk me out of because of my age. wait and see, i guess.
  • Cindi
    Cindi Member Posts: 134
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    Hello @kirstiekoala,

    First I'm so sorry, I understand how you didn't rush into getting checked out when you found the lumps, I also had cysts removed from my breast and was told I had lots of benign cysts there, it made me "not too concerned" about keeping up with mammograms etc.

    When I did find that a lump ( in fact 3) were cancers it was hard to take in, I also felt "numb" like you.

    My specialist also tried to put me off have a double mastectomy, so I had to go through lumpectomy's which breached the margins anyway so after all that he agreed to do double mastectomy. I should've been more insistent to begin with.

    Please be pushy with them, get on their backs about getting in quickly, ask your GP to again contact them. Push, push ,push. Soon it will be January and specialists, nurses and doctors will all start filtering back to work, so surely they can get you in if you have the energy to keep at them.

    Also after Chemo when the surgery discussion comes up, be insistent that you definitely want a double mastectomy.

    Sending you a big hug <3
    xx



  • kirstiekoala
    kirstiekoala Member Posts: 15
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    @Cindi unfortunately my GP is away until the 2nd January so I can't even get her to find out. But i plan to call the Breast Clinic today and find out if they have heard as they are the ones that put in the referral to the surgeon/oncologist. As soon as I found out I had breast cancer, I have told everyone: my husband, my parents, my GP, the Breast Clinic....anyone I would talk too, that I wanted a mastectomy. I don't want to give this cancer a chance of coming back. It feels like everyone, except the Breast Clinic is on board with it, and my husband is good and pushing the subject when I am too exhausted to do it. He has my back.

    How are you going now, on your journey @Cindi ? Also, can I ask and I hope I'm not being intrusive. Did you end up having implants after your mastectomy?
  • Mareealso
    Mareealso Member Posts: 30
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    Hi Kirstie, again very similar story.. had first occurance of breast cancer at 38.. had a mastectomy left breast. Tried to get the right breast off as well but was told it was healthy and the medical team felt it wasn’t required… so I left it at that. Have since found out (due to strong family history of breast cancer) that I and 5 of my sisters carry the BRCA 2 mutation.. and the cancer is back in my right breast. If at all possible and considering your family history, ask for testing to see if you are positive for BRCA 1 or 2 or any others (there are several). If positive-you won’t get any argument as it is now medically recommended. Ovaries and Fallopian tubes are also removed as a cautionary treatment..Stay in touch and let us know how you go..Thinking of you!
  • arpie
    arpie Member Posts: 7,742
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    SO sorry to see you join our select little group, @kirstiekoala ....

    I hope that you do get to see your Oncologist at least as many patients have chemo before and after surgery - as The idea behind Neoadjuvant chemotherapy is to attack not only the cancer cells in the primary tumor but also to destroy any cells that may be circulating in the rest of the body. It makes sense to do this first then remove the primary tumor, which will now be much reduced in size.   Often the tumour/s are also reduced in size, making it easier to get good clear margins too.

    Most medical professionals have at least a 3 week break from the end of this week til mid January .... and hospitals try & get as many patients 'home for Xmas', so they can just operate over Xmas/New Year with skeleton staff ... it is a mongrel of a time to be diagnosed xx

    My own diagnosis finally came thru in early Jan (the lump was found the previous Oct!!!) I ended up having a biopsy in between Xmas & New Year .... then I was lucky to get my surgeon's appt on his first day back at work in mid Jan ..... Sentinel Node test the next day & surgery the day after.  Once it 'starts' .... it usually 'flows quite quickly' ... but the waiting just SUCKS BIGTIME! :(

    Feel free to check this thread out too, with lots of info on the forum in 'other areas' & suggestions on what to take to hospital with you and even 'tick sheets' as to how you are feeling mentally & physically as you go thru this shitfest xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Whack up any questions that you have & we'll do our best to answer them - as we've 'been there, done that' xx

    take care & all the best 



  • kirstiekoala
    kirstiekoala Member Posts: 15
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    Thank you all for your kind words. I read some where that this is "select but invisible group" that absolutely no one wants to you join but membership is forced upon you: Breast Cancer. i think its a very apt description. The clinic has already said that they will test me for the BRCA gene or anything else that might indicate a possible family connection but they have asked me if I know whether anyone else who has had breast cancer in the family, got tested for it. I would assume they have but no one can remember if they had the gene. All the women in the family that have gone through breast cancer, were over the age of 60, the first time they had it. I don't know it that makes me more convinced its a genetic thing or not. Trying to remain positive for my kids over the festive season but its hard some days. But i hope you all have as good a Christmas as possible and im thankful that i decided to join the online network
  • Cindi
    Cindi Member Posts: 134
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    Hi @kirstiekoala,

    You're not being intrusive at all, I don't mind.

    NO I didn't have implants, I decided in the end I didn't want to put my body through the extra healing and stress, but that's just me, maybe if I was young I would do it.

    Medicare covers prosthetics for you if you decide to go flat, and I wear a sports one at my gym, it's quite light and easy to wear ( they fit in a bra) I also have heavier ones for if I want to wear them but have found I like the sports one best. I just look like I have nice breasts  :D

    Medicare pays for a set of two,  every two years I think (if you want more).

    I just go flat around our house and garden and sometimes when I go out.
    VERY nice in this hot weather.

    After the double mastectomy I took about six weeks to heal really well, but didn't have too much pain after the  op, at least it was bearable with the drugs they give you.

    I was in for 4 days, then home. BUT if you do this, DONT come home and be tempted to do house work, I did and suffered for it :( it made my healing not as quick.

    Hope this helps a bit, thinking of you and sending a big hug


  • kato79
    kato79 Member Posts: 2
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    Hi @kirstiekoala,
    It is such a hard time of year to get a breast cancer diagnosis. I too fully understand the need for staff to have time off but when you are newly diagnosed it is an anxious time.
    I have recently been diagnosed with Grade 2 DCIS and am waiting for surgery in the new year.
    Im feeling so many different emotions from Numb to sad to fight mode.  It is a true roller coaster.
  • Mazbeth
    Mazbeth Member Posts: 199
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    Hi @kirstiekoala
    Firstly, I am very sorry you are going through this, it is a tough time. It is completely understandable that you are feeling numb. Many of us here can relate to that feeling. This group is incredible and the collective knowledge and support is amazing.
    I was diagnosed exactly 4 years ago. I had neoadjuvant chemo and both my surgeon and oncologist said that it made no huge difference whether I had chemo before surgery or after. However, given it was Xmas they said we could start chemo immediately. They also said that having chemo first would mop up any rogue cells and it would mean I wasn’t delaying chemo while I recovered from surgery (and if I had an infection post surgery, chemo would be delayed). They may be suggesting neoadjuvant chemo to shrink the tumour for breast conserving surgery or a lumpectomy. This is something to really discuss with your doctor. 
    I knew from the start I wanted a double mastectomy (DMX) as I had very dense breasts and had many benign cysts over the years - I was 53. Even though I had made my decision, having chemo first really gave me time to work through what I wanted post treatment in terms of reconstruction. I was able to think about what plastic surgeon I wanted etc.
    Whether or not to have reconstructive surgery is a very individual choice and there are some excellent resources that can help you with your decision. I had a DMX with immediate reconstruction with implants.
    I found the delay in surgery was tricky to navigate as I wanted to ‘know’ the pathology of my BC which, until it is removed, you do not know the exact details. My BC was invasive lobular cancer (ILC) and it is tricky to image and is known to be ‘sneaky’. I did my treatment and 6 months later I had the surgery. The benefit was that the pathology actually shows your cancer’s response to chemo - kind of like a report card - which can help inform doctors whether there is a need for further treatment.
    There are some excellent videos on the BCNA site which I think you may find helpful. 
    I also did genetic testing which was clear. I had family members who had been diagnosed when they were older so the doctors did not think there was a genetic link, but as I have daughters, I wanted to know. This is also an area that is evolving and there are quite a few genes they test in connection with BC. 
    This is the most challenging time and as you know, the waiting is hard. It is great that your husband is advocating with you and for you. Gather your team and take it one day at a time. You will get through this.
  • cactusk
    cactusk Member Posts: 59
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    Hi @kirstiekoala,
    I'm sorry you're going through this - I'm amazed there are so many of us on here with such similar but still so different 'journeys'. I too am feeling very alone right now, as I wait (waiting, waiting) for my latest test to come back, to see if my New Year will start with chemo. As echoed by others, the rollercoaster is real - except sometimes on a rollercoaster you squeal with glee and not fear.
    Some days I feel really confident and positive, and then other times i'm almost catatonic with the whirlwind of the past 7 weeks.
    Every chat I've read on here has given me a little bit more confidence, whether it be through information, or clarity, or just knowing that someone else right now is dealing with this and getting through it. 
    Sending hugs to you - we WILL get through this,
    Kelly (cactuskelly)
  • iserbrown
    iserbrown Member Posts: 5,579
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  • GorgyS
    GorgyS Member Posts: 83
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    Hi  @kirstiekoala, We have the same diagnosis and story, but I am much older than you at 64 years old and have no history of breast cancer in my family. I also noticed a large fatty mass on the left side of my left breast. Since I've had a history of breast cysts in the past that were never alarming through mammograms, I thought this might be the same thing. I waited for 2 weeks to see if it would shrink before going for a mammogram. After the callback and an extensive assessment, I was diagnosed with invasive breast cancer stage 3, HR+, PR-, and HER2-. Similar to your diagnosis.

    The breast surgeon told me it was urgent and immediately sent me for an MRI/CT/PET scan, which was done after one week, and thankfully, it was all clear. However, everything thereafter was slow. My lumpectomy and removal of involved lymp nodes, initially scheduled in 4 weeks, ended up taking place in 6 weeks due to the public health system. As the margins were not clear, I was scheduled for another re-excision, which I underwent yesterday. I'm still recovering from the anesthesia as it makes me quite sick.

    My next appointment to find out if the margins have been cleared after the re-excision is in 2 and a half weeks due to the Christmas holidays. However, my first appointment with the oncologist since the diagnosis on September 29th is scheduled for January 17th. I'm trying to save my breast from a mastectomy, but I'm heavily informed about the possibility in the future. This website has been immensely helpful in understanding my condition and asking the right questions.

    I must mention that my GP did not cry. If she did, it would upset me as I don't want anyone to cry. I need positive and brave people around me

  • GorgyS
    GorgyS Member Posts: 83
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    Hi  @kirstiekoala, We have the same diagnosis and story, but I am much older than you at 64 years old and have no history of breast cancer in my family. I also noticed a large fatty mass on the left side of my left breast. Since I've had a history of breast cysts in the past that were never alarming through mammograms, I thought this might be the same thing. I waited for 2 weeks to see if it would shrink before going for a mammogram. After the callback and an extensive assessment, I was diagnosed with invasive breast cancer stage 3, HR+, PR-, and HER2-. Similar to your diagnosis.

    The breast surgeon told me it was urgent and immediately sent me for an MRI/CT/PET scan, which was done after one week, and thankfully, it was all clear. However, everything thereafter was slow. My lumpectomy and removal of involved lymph nodes, initially scheduled in 4 weeks, ended up taking place in 6 weeks due to the public health system. As the margins were not clear, I was scheduled for another re-excision, which I underwent yesterday. I'm still recovering from the anesthesia as it makes me quite sick.

    My next appointment to find out if the margins have been cleared after the re-excision is in 2 and a half weeks due to the Christmas holidays. However, my first appointment with the oncologist since the diagnosis on September 29th is scheduled for January 17th. I'm trying to save my breast from a mastectomy, but I'm heavily informed about the possibility in the future. This website has been immensely helpful in understanding my condition and asking the right questions.

    I must mention that my GP did not cry. If she did, it would upset me as I don't want anyone to cry. I need positive and brave people around me