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I’m a new member to the group

Lbazz230281Lbazz230281 Melbourne Member Posts: 8

Hi there, 

I’ve just joined the group. I was diagnosed with stage 1 breast cancer at the end of November, I’m 40 years old & in good health & there is no family history. Thankfully I caught it early. As positive as I’ve tried to be about it all, I knew that this lump had felt different to the two previous benign lumps. I’ve had the tumor removed & I’m thankful it hasn’t spread further. My surgeon performed a lumpectomy & a wide local excision, to form a clear margin which then showed pre cancerous cells - this has been detected in two procedures that he has done. I now have the decision to make to have another wide local excision or to have a mastectomy. 

Has anyone experienced either & if so I’d love to hear back from you & your experience?

Comments

  • June1952June1952 Regional VictoriaMember Posts: 1,413
    Welcome to the club none of us really wanted to join.  I am sure someone with a similar diagnosis will come on to respond to your request.  I will send you a private message - look at the top right near where you sign out.  💖
  • AfraserAfraser MelbourneMember Posts: 3,850
    Dear @Lbazz230281

    I had a clearly developed tumour and one malignant node, so no real decision - a mastectomy. I found it relatively painless and so far, nine years, no further cancer (no
    family history). It’s a hard choice but depends a lot on your own capacity for further surgery if required, and tolerance for monitoring of any more pre-cancerous cells. You haven’t mentioned any other additional
    treatment post surgery, you may want to factor in any major difference to your thinking. Best wishes whatever you decide. 
  • Julez1958Julez1958 SydneyMember Posts: 346
    Hi there
    I had a 5.5cm lobular tumour ( I assume yours is ducts which is the more “ regular” breast cancer)  that didn’t show up on mammograms.
    I also had no family history of breast cancer.
    initially we thought it was 4.5 cm and at the first consult with my ( very experienced) breast cancer surgeon he talked about a choice between a lumpectomy and mastectomy.
    I had E cup breasts and was going to get the other one reduced at the same time.
    When it turned out that the tumour was 5.5cm after the MRI and added to that the fact that lobular is more like a spider web than a nice neat  lump , my surgeon said that the likelihood was if he did a lumpectomy he wouldn’t get clear margins and I would need a mastectomy in any event.
    I did actually talk to a lady who was a friend of one of my good friends who had two lumpectomies and the surgeon couldn’t get clear Margins and she actually opted for a double mastectomy and DIEP flap reconstruction which is the path I eventually took.
    Everyone is different and these  are intensely personal decisions, my breast cancer surgeon said if I wanted to go the lumpectomy route he would give it a go but I needed to understand the risks.
    As it turned out the cancer was spread right up to the top of the breast and he said a mastectomy was the right choice after the surgery,
    I was lucky it had not spread to my lymph nodes so I didn’t have chemo but did have radiotherapy ( mainly due to the size of the tumour) .
    It’s a shitfest that’s for sure but now I’m 5 months post my reconstructive surgery with C cup breasts I am very happy.
    Well as happy as I can be in the circumstances ( I’d rather this had never happened).
    I did talk to my ( amazing) female GP as well as a breast care nurse to help me make my decision .
    All the best with whatever course you decide.
  • jennyssjennyss Western NSWMember Posts: 1,438
    Dear @Lbazz230281,

    from jennyss in Western NSW
  • FLCloverFLClover Sydney Member Posts: 1,426
    Hello 🙂. 
    Happy New Year 🥰. 
    I was diagnosed at 39, also quite healthy physically and no family history. I’d had a breast ultrasound in 2016 which came back clear. I asked for another one in 2018 but was denied. I was diagnosed Feb 2020, but found my lump in Dec 2019. 
    It was thought to be DCIS initially, and surgeon said if I had a mastectomy I could avoid chemo and radiation. I had an MRI pre surgery to help me decide, which showed more changes than first thought. I also had 2.5 lumps in right breast, and one lump in left breast, with suspicious changes. I therefore opted for a nipple and skin sparing double mastectomy with expanders inserted, at the advice of my surgeon. Post op, it was confirmed that it was IDC, stage 1, grades 1 and 2, with a micromet in 1 node. The suspicious changes in the left breast turned out to be DCIS, so I had to have the left nipple removed as well, as it was affected. I had issues with my surgeon, so changed to another one and she removed my nipple under local. She and my rad onc also confirmed that my first surgeon left unclear margins, despite the mastectomies, and so I also had to have bilateral radiation. When I confronted my first surgeon about it, he denied it. Anyway, it’s almost 2 years later now and I’m all healed, and just waiting for my exchange surgery. 
    My advice is, listen to your gut. It always knows best. And there’s plenty of great doctors out there, so get a second opinion if you think that’s best. Don’t leave room for doubts when it comes to your body. Also, a mastectomy is not that frightening as there’s options for different types of recon, and fantastic surgeons who can give you your confidence back. 
    All the best darl 🍀♥️
  • melclaritymelclarity Member Posts: 3,470
    @Lbazz230281

    I'm sorry to hear of your diagnosis, it certainly isn't easy no matter what your results are. 

    I had my first diagnosis at 43 DCIS left breast, lumpectomy wide excision, radiation and tamoxifen. 4 years later in 2015 I had a recurrence in exactly the same spot inspite of all those precautions 2.5cm IDC Stage 2 Grade 3 aggressive.  I had another lumpectomy with wide excision, sentinel node biopsy, chemo and put onto Arimidex and now Aromasin. Even after all of this my Oncologist recommended I at least do a single mastectomy. I really struggled with this psychologically, my genetic testing was negative, so I decided on a single with a Diep flap recon in 2017. 

    Whilst Im really happy with the amazing job of the recon, I struggle mostly now with the lack of help I have received especially in regards to the side effects of treatment. Being thrown into menopause the biggest issue has been weight, I have asked everyone for assistance and received very little. I was told it would settle back down, it hasn't, I also requested at the time of reconstruction for a reduction and was denied. Now with the weight, my breasts are just too large and im struggling with zero options. I do exercise but it is limited as I have lung side effects from radiation. 

    It is a massive decision, I do know in hindsight for me, I would have chosen a double mastectomy as in doing so I would have gotten a big reduction in both breasts. 

    There are no guarantees and I agree the importance of listening to your instincts is so important. I also believe too we all make the right decisions at the right times for ourselves.

    It really is underestimated the physical, mental and emotional impacts of not just the diagnosis but the treatments. So know that every step you take how incredibly brave and courageous you are. Love you through it. 

    I am so happy to hear of your very early diagnosis, so please know you will absolutely be ok as you navigate each step. I never thought Id get back to any sort of normal, but I work full time and am I would say back into life more than I ever thought. There absolutely is light at the end of the tunnel, so be kind and nurture you through it. You will be ok.
    Hugs M x

  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    I am so sorry to see you here @Lbazz230281 - and so sorry that you need to have further surgery to get clearer margins.
     It has happened to a few members .... what has your surgeon recommended?  Do you have a Breast Care Nurse that you can talk to as well?  Do you have a date for the next surgery yet? 

    I was lucky and only had the one lot of surgery, then rads & tabs ..... but I'd always told myself that if it had been a worse diagnosis, that I would have gone 'flat' ... 

    The girls have given you an insight into their experiences ..... is your surgeon also a plastic surgeon as well?  Not all recons end up as good as they thought they would be .... not all breast surgeons are fully trained as plastic surgeons - just one. more question to put to your surgeon xx

    As the girls have said - be kind to yourself - have a rant, a rave, a meltdown, a cry - we have all been there. xx. This disease mucks with your brain even more than your body, I reckon - so if you start feeling sad - make sure you get referred to someone who can give you coping skills to help you thru this shit fight xx

    For a bit of 'light reading' whilst you wait for your results - check out this post, that has info on a lot of other areas on the forum - and some 'tick sheets' down the bottom, that may help when formulating questions for your medical team xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    All the best with your decision making xx Take care, and wishing you all the best for your ongoing treatment xx

    Gosh, @[email protected] - what a hard slog you have had.  I find it unbelievable that you were denied a reduction at the same time as your surgery - it is not as if it was 'enhancing' surgery ie increasing!....It was just the mental blow as well as the physical blow on top of everything else, that was totally avoidable. xx


  • melclaritymelclarity Member Posts: 3,470
    Hey @arpie, the thing is a Surgeon and Plastic Surgeon will only do what is required, they won't deviate or go above that. My Surgeon worked closely with my Plastic Surgeon so he told me to go public as I would get them both, I did and had no out of pocket. Otherwise I would be $10,000 out of pocket through private health? really? none of this is 'cosmetic' yet it is treated far and wide as such. I don't think I've had a hard slog, yes its been 10 years of endless things, but I refuse to let it dictate my each day and new beginning. ;) Is it hard? for anyone? absolutely, but its not what happens to us, it's how we rise I say!!! :) Hugs M x
  • Lbazz230281Lbazz230281 Melbourne Member Posts: 8

    Thank you to everyone for responding back & for all your support, advice & encouragement. Never thought that this was something I would have to face or a decision I would have to make. I’m just thankful the cancer hasn’t spread or spread into my lymph nodes & it’s been taken out. My surgeon has been amazing & very supportive through all of this. He’s been informative & has guided me through all the options & possibilities that there are. I’ll be in contact with my care nurse to discuss my options further. I’m wish all of you the best of luck on your journey & once again many thanks for your advice & support. It too is comforting & reassuring to know that there is a community out there for us all♥️♥️

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