HER2+

Hi, I wonder if they are doing CT staging instead or combined with PET scan? I’ve been diagnosed in January with invasive ductal carcinoma grade 2, HER2+. I am in my 40s, pre menopausal, felt the lump. No evidence of spread on CT and bone scans. Because of the largish size of my tumour and it’s medium aggressiveness and receptor positivity, they suggested chemo first (neoadjuvant) with targeted biological(herceptin) followed by surgery (mastectomy). They said radiotherapy is not yet on the cards but will see post op . The aim of the chemo is to prevent any microscopic tumour cells embedding elsewhere in the body  and shrink the primary tumour (I’ve not got any evidence of lymph node involvement yet). I didn’t ask about PET as seemed they had a pretty good idea about staging from the CT scans I had (and maybe there isn’t a PET machine at my hospital). I am giving my details because I know that everyone’s treatment plans are different as our cancers are different but they generally have specific NICE recommended  treatment pathways for each type of breast cancer. So you should be able to find out the pros and cons of options and the hospital team should help you make a joint informed decision. Your breast care nurse should be able to answer these questions and if not, ask that the  doctor call you back. I’m from a medical background but it still takes time for me to process, reel, freak out, process again,  and then  know what questions to ask (and invariably I fluff up asking the question so have to ask again). But I will keep asking until I understand, as should you. Some clinicians aren’t the most natural “people” persons but don’t be intimidated or put off by their “this is absolutely normal” or “ we do this a thousand times.” It is reassuring that they do- being the experts in charge of your care- but  you are an individual patient who needs their attention and is allowed to ask questions and expect informed answers. 

That's really helpful, thank you so much for replying. They gave me a booklet to read which seemed to suggest most people have surgery then chemo. After I'd decided to go chemo then surgery I then had a panic.  I think I will try to make a list of questions ready for the oncology appointment. Still processing the whole thing!!!!! It's also weird to think that I am about to take actions that will make me feel ill when currently I feel totally well. It's all a bit surreal.

Hi there,

I was also given the same decision as you. Because I’m HER2 positive too they did advise chemo first, for me they hope it will shrink the tumour enough that I can have a lumpectomy rather than mastectomy but I’ll have to see how the chemo goes. 

The ultrasound didn’t show any spread to lymph nodes but the truth is they won’t know until surgery. I just hope that the chemo might stop it if it has got that far. I do wish they would give me a scan though. 

I’m into day three after my first chemo. Feeling a bit rough but it’s been manageable so far. It’s such a difficult choice to have to make so I really feel for you. My oncologist said that doing chemo first gives me more options after surgery if they’re needed. 

Ruby xx

Thanks Ruby, that's reassuring. Good luck with your chemo.

Hi Iblodwin,

Not sure if I can help as I’m not in the same position. My cancer is inflammatory, stage 3 with lymph node involvement (HER2 +). I wasn’t given the option of surgery first as the cancer is too locally advanced. CT scan showed no distant mets, thankfully!

Chemo hasn’t been too bad (so far) and I actually feel that my breast has changed. It’s not so hard, swollen and red. My BCN says this is a good sign.

It’s difficult to take in and process all the information. I planned to write questions down prior to my appointments but didn’t actually do it! My BCN has kept in touch and has answered questions though. I was a bit to keen on Dr Google but have decided to stop that now!

Hopefully you can come to the right informed decision for you. I felt so much better when I actually had a treatment plan and felt a little bit more in control. I found the not knowing to be the actual hardest part.

Bluebell xx

Thanks everyone. The oncologist was great and answered all my questions. Just need to actually start the chemo now. Anxious to get going so I feel I am making progress but nervous about what the chemo will actually do. One step at a time. Need to tell a few close people my diagnosis too. Tricky conversations ahead.