Hi @Mez_BCNA
I would have found a triple positive breast cancer group very helpful.
Main benefits -
*understanding the commonly used HER2+ targetted drugs and hear how others have experienced their different side effects
*different subsidies for one or two of the treatment drugs (eg pertuzumab aka Perjeta)
*typical timelines, decision points and potential for deviation over the course of treatment
*the usual treatment duration (generally 14-15 month timeline)
*the duration of the treatment itself by drip (in my case 4 hours initially and later 1 hour) and pros or cons of a port-a-cath
*The different ways the drugs can be given (some people have IV and others may have injections)
*Understanding the way oestrogen is also taken into account and at what point the aromatase inhibitor treatment (usually) comes into focus
*whether to pause (or not pause) the second part of the immunotherapy treatment for radiation therapy
*If you’re also a person, as I am, with Invasive Lobular Carcinoma it’s helpful to know about ILC, even though HER2+ is less common in ILC statistics.
*In the early days after initial diagnosis (based on a biopsy) there’s often a couple of weeks whilst getting a raft of tests done (MRI, 3D mammogram, PET) and it would have been helpful to have a group during this period, before a treatment plan is worked up, to help appreciate the breadth of experience and different elements associated with being triple positive.
It would help work related decisions, financial decision making and help to set expectations for family and friends if we better understand the treatment and its duration.