Newbie - not the 2024 I was hoping for!

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Paris_24
Paris_24 Member Posts: 24
I was diagnosed just before Christmas 2023 with invasive lobular cancer - a journey that just keeps unfolding.  Initial diagnosis scans showed the ILC was 3.3 cm, then MRI 6 cm and the pathology results ended up at 7 cm and another 1 cm LCIS spot in a totally different area.  I had two surgeries- a mastectomy and a positive sentinel node, followed with an axilla clearance. I have some cording post surgery which physio is working on.  Next week, I start chemo (AC and then Pacilitaxel) followed by radiation and then endocrine treatment. Not what I was hoping for the year I turn the big 5-0. I really appreciate reading other’s experiences, and the Q&As available here.
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  • arpie
    arpie Member Posts: 7,742
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    So sorry to see you join our select little group, @Paris_24 ..... the club no-one ever thought they'd join :( 

    We have a Private Group for ILC members where specific info re ILC is put up - jump on here & click 'join':
    https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

    I hope you've recovered well from your surgery - that is a bugger about the cording tho!   Maybe put up a separate query about that? I know that it can be quite restrictive when it is bad ..... I hope the physio is helping.

    Have you been assigned a Breast Care Nurse?  You can also put any queries past them as well - as they'll have lots of tips & tricks from their other clients xx

    Feel free to jump onto this thread & read up a bit more on what else is available to you on the forum - you can show off your garden, art & craft, your fur kids - any thing you like, really!!  ;)  We even have some 'funny' posts, for you to have a giggle, too!!
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Wishing you all the best for your chemo next week - drink lots of water, and rest up when you have to. xx  Eat lots of small meals rather than 3 big ones - maybe cook up some of your favourites and freeze them this weekend, so you have some choices 'ready to go' ;) 

    take care 
  • Coastiejas
    Coastiejas Member Posts: 40
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    Hi @Paris_24
    My 50th present was a cancer diagnosis and my Christmas present was losing my hair, not quite what I was hoping for either! I've had 4 rounds of the AC chemo and started the paclitaxel today....
    I've also had axillary clearance and have some cording.....keep up the physio and massage..I'm finding qigong helpful too. They have online sessions through look good feel better.
    Stay strong and be kind to yourself....try to treat yourself each day with something nice, even if it's just a bit of cake or a lovely soap etc...

  • Abbydog
    Abbydog Member Posts: 485
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    I'm sorry about your diagnosis. Similar story to mine. Although I was 61 at diagnosis. I recommend trying the Cold Cap. I didn't lose my hair. Thinned a little on top. Not very noticeable. I was very lucky. I had some side effects, to Chemo but they were all manageable. Always ask questions and report any issues to your Oncology Nurses or Oncologist. They have lots to offer. Have you got EviQ information sheets for all of your treatments? These sheets can be handy, to be prepared for possible problems. They are also from a reliable Australian medical source. Better than google. I hope that you get on well. My story is in my profile. Click on my name or Emogi
  • MrsMorrisey
    MrsMorrisey Member Posts: 83
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    It’s pretty crap isn’t it. Not exactly what you want as you go into your 50th year. 
    I’m 50 as well. IDC with no nodes so no chemo for me but I’ve had two surgeries so far and my follow up is Monday to see if she got  clear margins this time. Bloody hope so!
    Invasive tumour is gone but  DCIS is remaining.
    50 seems to be an awkward age to be diagnosed because all tests are based in younger or older than 50. 🤷‍♀️
    Best of luck with everything and remember to keep posting so you know you’re not alone. 
  • Paris_24
    Paris_24 Member Posts: 24
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    @arpie thanks for the info.  I am lucky and can access two breast care nurses who interchange care and have a fabulous treatment team.  When I was told before Xmas not to be surprised the results would show I had cancer, I remember one of nurses telling me you can do this physically, bc is a mind game.  Holding on to that as I move forward and knowing many before have walked this path.  Love the garden, fur baby and art - so very peaceful.
  • Paris_24
    Paris_24 Member Posts: 24
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    @Coastiejas thanks for sharing and can imagine losing you hair could be distressing. I am going to go on the front and shave my head this weekend - the team said I am going to lose it by week 2 or 3.  So glad to hear that you are progressing through your treatment stages and finished with the AC.  The physio did some laser which has helped, more massage and I have an arm sleeve for the next 8-12 weeks to help reduce lymphoedema. Thanks for the online session tip.  I will definitely prescribe to the treat regime - sounds like a great plan.  Keep up with your mojo and wish you all the best.
  • Abbydog
    Abbydog Member Posts: 485
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    Dear Paris_24, I don't believe that you will definitely loose your hair with the Cold Cap. I don't know the percentages. I had EC and Taxol, almost the same as your plan. I had very good success. It is very individual. You won't know until you try. All the best regardless.
  • Paris_24
    Paris_24 Member Posts: 24
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    @MrsMorrisey good luck for Monday with your results! 
  • Paris_24
    Paris_24 Member Posts: 24
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    @Abbydog thanks for sharing and glad to hear the cold cap worked for you and your side effects were manageable.  My emotions swing between you got this and be kind because it will be rough.  I guess time will tell.  I will check out your story. 
  • Coastiejas
    Coastiejas Member Posts: 40
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    Hi @Paris_24
    I lost my hair pretty much at the 3 week mark, but everyone is different.  I still have a bit of fluff left!!!
    It did clog up my vacuum cleaner when it fell out  :open_mouth:
    I've also got the sleeve but the good news is it reduced my lymphoedema readings to their lowest ever after a week of wear so all that heat and discomfort is worth it in the end!
    Good luck with the AC I found it pretty brutal (again everyone is different!) but you will get through it and the paclitaxel is a bit easier so far....
  • Abbydog
    Abbydog Member Posts: 485
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    Dear Paris_24,
    How are you going? Hopefully managing OK. Thinking of you.
  • Paris_24
    Paris_24 Member Posts: 24
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    @Abbydog thanks for checking in and the thoughts.  It gives me hope knowing people care and have been out the other end of this. One AC brew down, lots of nausea, extreme fatigue and other side effects (awake at night, mouth care and bowel mainly) no doubt compounding each other.  Managed a small walk today.  Just generally feeling frustrated with the situation and the road ahead.  
  • Abbydog
    Abbydog Member Posts: 485
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    Well you are on the way. You will settle into a routine. And know what suits you along the way. Report the nausea to your treating team. They may increase or change your anti nausea medication. You will have a rhythm of ups and downs. I'm sure you will be fine. It is about acceptance of the new you, but it all takes time. 
    I was in a most unusual position of knowing a large number of women with BC, before I got it. So none of it was a surprise to me. This is not common. I'm a nurse and worked with a very large number of women.
  • Coastiejas
    Coastiejas Member Posts: 40
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    Hi @Paris_24
    I was also wondering how you were getting on. Sounds like pretty much what I had. It does get a bit easier as you navigate through it. I had good and bad days.... you just have to accept the bad ones and know that they will pass and you will feel a bit better. I had some insomnia too and found meditation helpful after a suggestion from my McGrath nurse (I'm not usually all new age!!) Look good feel better have some online sessions. Staying vigilant with the mouth wash has been working for me for any mouth issues. Agree with @Abbydog re the nausea,  your team may need to tweak your meds a bit. I hope that things are starting to get a bit easier for you and don't forget to keep up the treat regime. 
  • Paris_24
    Paris_24 Member Posts: 24
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    @Coastiejas half way through week two of the 3 week cycle it was like the fog lifted in my brain and I have started to feel like my old self, including appetite returning.  So much so I booked a staycation for the weekend near the beach to give me another view to sit around and look at from inside and hopefully some morning or twilight walks.  I am so up with the treats suggestion, fresh blackberries, and my favourite plain Jatz.  Hope you are going well.