Invasive lobular breast cancer 70mm

Hello , i am new to this journey ,  am 49 years old and at the beginning of this year I was diagnosed with invasive lobular breast cancer 70mm , ER 8 Pro HER - 2 low , I  had a full right hand side mastectomy 4 lymph nodes taken 2 of which compromised with disease .. I started chemotherapy last Monday E C my 1st time , 2 more to go and then 3 x T  and then radiation , so I have a bit of a journey , I am trying my hardest to remain strong but find some days more of a struggle .. 

is any one going through similar or can give some sort of reassurance .. would be nice to have a little light … x

  • Hi there, this is my first time posting but felt I had to! Like you, I was 49 (now 50) last Sept when I was diagnosed with ILC ER+ HER-, and had right side mastectomy and full node clearance. Path results showed 3 large masses and 17 of 19 positive nodes… I’ve had intense 4xEC and 12x Abraxane (was allergic to Paclitaxol), and recently finished x15 radiotherapy. Am now on Leuproelin, Letrozole as was peri menopausal, and started Zometa (for bones) and Abemiciclib (biological therapy) with aim to reduce risk of return. 

    All I can tell you is I’m doing ok! Initial shock over, surgery ok, chemo wasn’t as bad as I’d expected once we got on top of anti sickness meds and steroids. Lost my hair and totally embraced beanies, and am a positive person so just threw myself into the experience knowing it’s not forever: that said, there’s always sad days, duvet days, lots of fatigue and even a stint of covid and sepsis at Xmas, but I do what I can on the days I can - including gym sessions to strengthen shoulder and keep moving, and now booking holidays! There is definitely light not just at the end, but throughout the journey…hang in there and surround yourself with love and positivity. Take opportunities to rest but also get out even if it’s just a walk in the park. And happy to talk if you’d like to… 

  • Hi, I was diagnosed with invasive ductal carcinoma in January and have been on EC-T chemotherapy. I have completed the three cycles of EC, have had one cycle of the T ( which for me is docetaxel), with three more to go. I am triple positive so have now started phesgo injections along side the docetaxel, which will continue for a year. I am due to have a mastectomy after I finish chemo, then radiotherapy. I will also go onto hormone blockers for 5-10 years. Although not quite the same, your journey is similar to mine. I wish you well moving forward. Xx

  • Hi pippin ,

    thank you for your reply , very similar as I have just started E C , I have 2 more to go then the same as you 3 x docetaxel then radiotherapy then hormone blockers 5- 10years 

    I wish you well too moving forwards .. x

  • Hi Hunnie,

    thanks for sharing. I was diagnosed with ILC at the beginning of the year and have been through 2 lumpectomy. I am waiting to hear if the margin is clear this time. I am 50 going to 51. My consultant suggested tamoxifen because of perimenopause and concern over bone damage. I read a medical paper that suggest Letrozole is more effective. What is your experience on the drugs and side effect? Many thanks. Izzy xx

  • I’ve been on Letrozole for almost 3 months now, and the side effects are strong…lots of hot flushes and night sweats, super emotional in first month and quite bad joint ache. Have a review with my onco in a few weeks eho said we might consider changing to Anastrazole if these don’t improve! 

  • Offline in reply to Hunnie

    I also have Zometa (Zoledronic Acid) aneed calcium/D3 tablets to help with potential bone issues. 

  • Offline in reply to Hunnie

    I really hope your path results for lumpectomy are good, ILC is sneaky and tricky to get margins. 

  • Thank you very much, Hunnie. This is very helpful. I think there is an FB page for people to discuss the side effect of tamoxifen, letrozole and Anastrazole. I haven’t joined it but I may soon so that I can see how they cope with different side effect and longer term effects. Wish you all the best. xxx