Triple positive invasive lobular carcinoma

HiDonna_B I’m sorry to hear about your diagnosis - a roller coaster couple of months for you. If you join and then re-post your comment in the private Triple Positive Group there might be someone with a similar treatment sequence.

I did not have surgery first but I was wondering if your Triple Positive Invasive Lobular Cancer (ILC) presented as a lump. ILC is usually described as presenting in a line of single cells through breast tissue (string of pearls) but in my case (unusually) my ILC showed up as a lump, so neo adjuvant treatment was recommended to observe the lump’s response and reduce the size of the 3.8 cm lump, this in turn would reduce the amount tissue that would need to be taken in surgery (I was recommended a lumpectomy).

It’s a good question to ask your surgeon or oncologist why your treatment was sequenced with surgery first.

I had 6 doses of a combination of drugs “TCHP”, then surgery, then 15 consecutive days of radiation therapy. After radiation I had 11 doses (each 3 weeks apart) of the targeted treatment + chemo called “Kadcyla” (not everyone needs the additional chemo, usually they have Herceptin instead). I was started on my oestrogen suppressing therapy (an aromatase inhibitor tablet called “Letrozole”) after radiation.

It’s fair to say there’s a huge range of responses that vary for every person depending on their circumstances. For me the first 6 treatments with TCHP were rigorous, in terms of hair loss, appetite and fatigue. After that the next phases were more manageable but I was glad to be doing very part time work. It’s also different for everyone but for me it felt like a long haul of active treatment with over a 14 month period between the first IV infusion and the last (I think that’s typical for HER2+ folks). How I pulled through was probably more accident than design but a couple of things on reflection were important - getting a port a cath inserted (instead of having a canula and big search for a vein each treatment), signing up to an oncology exercise rehabilitation program and learning to plan and adapt my expectations of myself and aligning them with my known pattern of recovery after a treatment (dose). You will be able to do this depending on how you respond after a few treatments. Do be gentle on yourself and prioritise yourself, it’s okay to hold friends, family and activities at bay at the times when you need some space to just “be” and say “yes” to all offers of help, freezer food, dog walking etc. 

I hope this gives you a bit of context of why someone might have been recommended Neo adjuvant treatment and also the treatment ahead. It is almost 12 months now since I finished my active treatment and I am grateful to be well and relieved to feel like my energy and physical wellbeing is restored. Sending you big virtual hugs for the next phase.