Forum Discussion
Newbie - not the 2024 I was hoping for!
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.
22 Replies
- @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.
- Dear Paris_24,
How are you going? Hopefully managing OK. Thinking of you. - 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 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.
- @MrsMorrisey good luck for Monday with your results!
- 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.
@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.- @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.
- 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. - 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
