What a bummer that you should join us when you’re so young.
If you don’t have anyone to bring with you, the BCN will probably sit in on the meeting so she can explain everything to you afterwards if you need that, and that may well be the reason for her asking whether you’re bringing someone with you, not a signal that there’s anything particularly nasty to come.
Coping before appointments? I stuck my fingers in my ears and sang “la la la I can’t hear you” until the night before the results appointment, then spent that morning climbing the walls. I took OH’s dog out for a loooong walk on the common, as I could rant and scream and cry without having to worry about people hearing me. Other people do housework and end up with their houses absolutely spotless!
Without doubt the waiting is the worst, but let’s look at some of the things they MIGHT be telling you.
Firstly, when you have a core biopsy you are given a preliminary diagnosis - type of cancer, grade, size, that kind of thing. After surgery, when they have the whole thing there rather than just pictures and samples, these things can change. For example, I was told initially that it was Grade 2 IDC, 16mm, hormone positive, but after surgery they discovered it was Grade 3, had bits of DCIS and LCIS in it as well, and was HER2+. But it was only 13mm and not 16mm. That meant that where I had first thought I’d get away with just rads and hormones, I ended up needing that plus chemo plus Herceptin.
I was also told before surgery that because of the nature of the beast around 20% of people don’t get clear margins. This is where they take out a rim of clear non-cancerous tissue all around the tumour, to make sure they’ve got it all. In this instance they may need to go back in and whip out some more. Had that one too! Sometimes when people are told the margins weren’t clear the surgeon may even recommend mastectomy rather than a re-excision (going back in to take some more), but I couldn’t tell you how many or what your own surgeon will say because it is a very individual thing and depends so much on what they found when they went in.
Depending on your surgery, you may get the results of the SNB. I was fortunate in that they knew those results while I was still under anaesthetic, but that technique isn’t available everywhere, so you may also get told those results. The nodes that were taken will have been examined under the microscope very thoroughly to see if they had traces of cancerous cells in them. If they did, then you’re almost certainly going to be recommended chemo, and from what I’ve learned on here and in the NICE guidelines that will be something you might read on here as TAX. It’s a gold standard treatment, but it’s pretty tough to go through for many people.
If nodes are positive, depending on how many they took and how affected they were, you may be offered further surgery to remove more nodes, and possibly scans to check other parts of your body.
But it is ALL manageable. Absolutely crap, but manageable, even if you get the full works.
I think I’ve covered most of the options. I don’t want to scare you, it’s all scary enough as it is, but I think that lot above is generally what happens. Other ladies will no doubt jump in if I’ve missed anything.
In order to prepare for your meeting, I suggest you get hold of a notebook and write down a list of questions that you want to ask, leaving space to write the answers. Some of the questions might end up being irrelevant, but at least if you plan what you want to ask, you will feel like you’re doing something worth doing in the run-up to the meeting. It also helps to write down all the answers you are given, so that you can refer to them afterwards and also to help to “pace” the meeting, as sometimes it can feel completely overwhelming.
THERE IS NO SUCH THING AS A SILLY QUESTION. If you’re concerned enough to wonder about it, it’s a valid question and can be asked. Either on here, to the helpline, your BCN or your surgeon.
If you’re looking for things to keep yourself busy, take a look at the Look Good Feel Better website, so you know about something nice that you can do during the next lot of rubbish that cancer throws at you. Also make sure you’ve got your prescription exemption form from your GP’s surgery, so you are entitled to 5 years free prescriptions for anything, not just stuff associated with cancer.
Some people have gone to their GP to get help with sleeping. Your doc will probably prescribe you a couple of days’ sleeping pills just to help during the waiting, as lack of sleep can be another torture and the middle of the night can be the worst time.
Think that’s about it, but most importantly, have a huge virtual hug from me, this is a horrible disease that none of us wanted, but we’re here for you at any time for you to offload on.
CM
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