Three plus years on herceptin and perjeta

This is my first post on this site. I haven’t needed to ask any questions as I’ve usually found answers and comfort within the forum.


Just over three years ago I had a mastectomy, chemotherapy (2 sessions only, bad reaction with 2nd dose), and radiotherapy, and have continued having Herceptin and perjeta via IV every 3 weeks since then. I have had yearly check ups with my consultant and quarterly clinics with my oncologist. Initially, I was told my cancer was not curable but treatable. 


A year ago I was seen by a professor who was covering for my consultant who was on holiday. He asked why I was still having treatment. My scans show no change. When I queried it with a stand in oncologist, she was not pleased and said she couldn’t understand why I was still seeing the consultant. I accepted the explanation that the cancer (HER2) could spread. 


Two weeks ago I had my annual check up with the consultant, who discharged me and added he suspected the oncologist would do the same the next time I saw him as scans showed nothing has changed in 3 years. 


Whilst I am not asking for my treatment to be stopped, I am equally as concerned that I’m taking chemo drugs unnecessarily. Has anyone taken the combination of drugs as long as I have or had similar experiences?


Thanks in advance, Lil

Hello Lil, 

Hopefully someone will come along and give you a more knowledgeable reply. I just had the standard (uk) 18 Herceptin treatments over a year (stage 2 tumour).

As you say you were initially told that the cancer was not curable but treatable, then I am assuming you were diagnosed at stage 4, Her2 positive.

As far as I know, herceptin can be used as a long term treatment (for as long as it working/as long as the potential side effects are tolerated).

So if they are now all going to discharge you/querying why you are still on treatment, are they saying that the initial diagnosis was wrong?  If  your tumour was classed as stage 4, then even if you had a break from treatment, surely you would still have regular input and checks from Oncology?

Is the Consultant/prof you saw part of a surgical team rather than Oncology? I could understand the Breast Team/surgical team discharging you but not Oncology.  Hopefully you can clarify things at your next Oncology Appointment. If tgat is not for some time, then maybe you have a nurse contact who you can discuss things with.

Sorry if I have not been of much use. 

Take care Lil,

Chick ?