just joined a couple of weeks ago after diagnosis. After waiting a bit, ive only just got my HER2 result today, meaning my planned mastectomy has now been put on hold, with the plan now being chemo before surgery.
I have my first appointment with my oncologist on Friday but have no idea what to expect.
Will i get a full treatment plan? how soon is the chemo likely to start after the appointment? is there anything i should be doing to prepare/plan get sorted?
Seems to be all manner of drugs and treatments.
Just like to try and find out what is likely to happen
I started chemo within two weeks of the initial oncology meeting. (Mine was after having surgery first.) If you need a CT or MRI before starting chemo that might delay you a few days — I only had a CT and then a heart scan. But usually it’s within two weeks I think.
They will tell you which chemo drugs you’re getting, and how many “cycles” or “rounds” of the drug, and the gap between each cycle. You have blood tests before each cycle, usually 48 hours before, and the results of the blood tests determine whether you actually get the chemo as planned — if your white blood cells (specifically neutrophils) are too low then you have to wait until they’ve recovered for example. Sometimes they’ll recover enough in 24 hours so a re-test clears you for chemo as planned, but sometimes you have to delay for a week. The neutrophils usually only start to misbehave once you’re a few cycles in though.
They’ll go through the potential side effects of the chemo with you, but it’s unlikely you’ll get all of the side effects they mention! They just have to tell you just in case. If you come back here once you know your drugs then someone will be able to offer advice.
EC for example will turn your pee red for 48 hours and unless you cold cap you’re pretty much guaranteed to lose your hair, and even if you do cap you might still lose a lot or even all of it.
If you want to cold cap to try and save your hair, ask if they offer it. Not everywhere does, and some places stopped offering it during the first peak of the pandemic.
I don’t remember much else from my oncology meeting other than signing the consent forms.
Be ready for more leaflets, more appointments, consent firms and hopefully not too long to wait. Like you I was her2+ so replaced plans for surgery. I had oncologist appointment on Monday and first chemo the following week on Thursday but had to fit in blood tests, CT scan heart scan and appointment with chemo nurse first.
oncologist set out treatment plan and explained drugs etc. measured height & weight (as prescription is personalised). Appointment lasted about 20 mins. Asked me to sign consent form. Follow up appointment with chemo nurse(by phone) went through a lot more of the practical details of what would happen on the day, how they would support me, what to bring etc and how the treatments in the cycle would differ. Also gave me the chance to ask the questions I had forgotten to ask the oncologist.
Will probably ask you about cold cap if available to you as need to know to plan your appointment for treatment as you will need to stay for longer on the day. I didn’t have to make firm decision immediately and could confirm with chemo nurse call.
I was also told to shield because of covid once treatment starts so just be aware you might need to - ask your oncologist - so if there is anyone you really want to see or do get in quick (local lockdown permitting!) before treatment but stay well.
Agree don’t let the list of side effects scare you. Best advice I had was don’t think about them as a list of what you WILL get - just be aware you MIGHT get SOME of them. Also join the monthly chemo starter thread on here so you can talk to people in the same place as you.
If you haven’t already had one try to get a flu jab from your GP before your treatment starts.