Scared!

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13

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  • Jenny004s
    Jenny004s Member Posts: 11
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    Thank you Kiwi Angel
  • Eastmum
    Eastmum Member Posts: 495
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    Hi @Jenny004s - this is the most difficult time. The ‘unknown’ is so much worse than anything else. 
    Everyone said that to me when I was at your stage and they were absolutely right! 
    Once you’ve seen your dr and you get some information you can start working on a plan to deal with whatever it is that you’ve been diagnosed with. 
    All the best for your appointment tomorrow and don’t leave until all your questions are answered. If you don’t have anyone going with you, take notes or record the whole conversation on your phone so you can play it back and re-absorb it all when you get home. 
    Let us know how you go! Xxxx
  • Eastmum
    Eastmum Member Posts: 495
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    That’s awesome @MaryB83! All the best for Friday! Xxx
  • Jenny004s
    Jenny004s Member Posts: 11
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    Thank you Eastmum. That’s great advice. All I can think of is my daughter and staying around for her. I’m so determined to come out the other side. Still can’t believe it tho. No history in the family. Not sure why cancer chose me. Might be a rough nights sleep I think. 
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @Jenny004s. No history for me either but going by the new advertising campaign that appears to be very common. Thinking of u xoxox
  • Jenny004s
    Jenny004s Member Posts: 11
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    Saw the surgeon today. It’s aggressiveand reasonably large but it is contained in the breast tissue and not present on the lymph nodes which is good news. Off to Perth next week for a full mastectomy. It’s a bit frightening but I’m glad I have a plan. 
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @Jenny004s at least it is contained. Thinking of u and sending big hugs xoxox
  • Eastmum
    Eastmum Member Posts: 495
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    That's great that you have a plan @Jenny004s. I had a full mastectomy nearly 5 weeks ago and I was back at work and driving after 2 weeks. No family history - same as you.
    Who knows why this bugger of disease picks us - but hey, we're in excellent company with an incredible support network and the beneficiaries of decades of research.
    Don't hesitate to jump on here at any time and ask whatever you like. I asked some questions that really seemed quite trivial but they were things I wanted to know, and there was always an angel on this forum who was happy to give me their incite. 
    Best of luck with it all and please let us know how you go! xxxxx

  • arpie
    arpie Member Posts: 7,600
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    All the best for your surgery next week @Jenny004s .. you will be in good hands.   xxx


  • Jenny004s
    Jenny004s Member Posts: 11
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    @Eastmum did you have Chemo as well? They mentioned it today. I’m just wondering if it’s necessary. 
  • Eastmum
    Eastmum Member Posts: 495
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    Hi @Jenny004s - I start chemo on Tuesday next week but my cancer was very different. It was an invasive lobular carcinoma, which is incredibly hard to detect and usually very big by the time it rears it's ugly head high enough for someone to find it. It spreads through the breast like spiderwebs and I had 10cms of tumour spread in my left breast and 16cms in the right - and the one in the right was not actually detected at all - even by MRI - they were all shocked when they got the pathology after my surgery. I also had some nodes involved on my left side. So even though all my staging scans were clear and I have no metastasis, given the nodes and the size of the cancer, they've recommended chemo and radiation and then I'll be on hormone therapy as my cancer was highly hormone responsive. Take one step at a time and don't make any decisions about treatment yet. After your surgery, when you get your pathology results, you and your drs will have much more information on which to base any recommendations for treatment. Sending you lots of hugs! xxx
  • Jenny004s
    Jenny004s Member Posts: 11
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    Thanks @Eastmum. That’s awesome advice.
  • kmakm
    kmakm Member Posts: 7,974
    edited May 2018
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    @Jenny004s That is wonderful news about the no spread. This whole wretched thing is frightening but as your treatment plan forms and gets underway, it all gets more manageable, and mostly less scary!

    I had a double mastectomy (and reconstruction) two weeks ago tomorrow. With no lymph node spread it sounds as if you won't be having an axillary clearance. That will make recovery easier and you'll be less likely to have complications like lymphedema.

    Whether chemo is required or not is best discussed between you and your doctors. You said your cancer is very aggressive, so that sounds like it's Grade 3, meaning those little buggers are very busy multiplying in there. It will all become clearer once the pathology from your mastectomy comes back.

    I had no lymph node spread. I have a bad family history and so did an oncotype test to see if chemo would have a curative value should any cells have wandered off to find somewhere else to roost. It came back with a clear yes so I did chemo.

    Chemo is not pleasant by any stretch of the imagination, but for most people it's manageable. Try not to anticipate any side effects, we are all different and react differently to the same drugs. 

    Ask lots of questions, listen to your gut, work with your doctors. Do you like them? I really like my breast surgeon, he's very intuitive and sussed me out pretty well, and so I trust him and the advice he gives me.

    Hang in there Jenny! You've got this, and we've got you. Big hug, K xoc
  • Jenny004s
    Jenny004s Member Posts: 11
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    @kmakm yes it is grade 3 and The team has been very responsive which I am grateful for. Did you have cancer in both? I am keen to do both just not sure if they will. With such an aggressive cancer taking both would give me some piece of mind. 
  • kmakm
    kmakm Member Posts: 7,974
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    @Jenny004s I had a tumour deep in my right breast. When it was removed my surgeon did not get clear margins so a week later he did a re-excision. The tissue removed this time had 4cms of what they call "occult" cells, DCIS that had gone undetected in all the mammograms and ultrasounds I'd had by then.

    My sister died from BC and my mother had it at my age. My breast surgeon said "One is bad luck but not unusual. Two is really bad luck and maybe a coincidence. Three is no coincidence at all." So genetically there is something going on in my family.

    My breasts are dense. This makes detecting cancers & DCIS more difficult. The jury is still out on whether it predisposes you to developing a breast cancer in the first place, but it looks like it could .

    I am raising my own two children and my sister's two. And looking after my 85yo father-in-law. Responsibilities!

    Plus you know, I want to live! My chances of developing a new breast cancer in my other breast were 25%. There were some other reasons on the list, and going with my surgeon's advice, I had the bilateral mastectomy. The histopathology on the right boob discovered another previously unseen 8cms of DCIS, just under the nipple, a skip lesion. I would never ever ever have trusted any mammogram or ultrasound I would have had. For me, two weeks after taking them both off, it was the right decision.

    It's about the most personal choice you can make. Get some counselling, talk it through with your doctors, you partner, know what you're heading into as best as you can. K xox