The waiting game

Hi all, first time poster here.

A bit of background, probably a little over a month back I came back from an exercise class and happened to catch a glance of my boobs in the mirror as I was removing my sports bra. I noticed a bit of dimpling which I initially put down to my sports bra being too tight and digging in. Of course I did also cop a feel of myself to feel for lumps but couldn’t feel anything.

After monitoring things for a few weeks (now regretting waiting) I did then feel what seemed to be a smallish lump so got myself in at the GP and got a referral. On the day I was supposed to get my screening done…I got COVID! So had to postpone my appointment. The anxiety got the better of me so as soon as I was testing negative again I called the screening team and managed to get a cancellation appointment a little sooner than the rearranged appointment.

Yesterday I attended the appointment and well, it turned out not as I’d hoped. I’d been telling myself I was paranoid because I’d unfortunately had a friend who succumbed to BC at the age of 33. I’d also had a fibroadenoma in the past too so had been convincing myself it would be nothing. However at the appointment it went from you’re too young for a mammogram (39) to being called straight in for one. Then I was called back for another mammogram so they could get a better view of the whole breast by getting the machine moving around the area. I understood that didn’t sound good. Followed by ultrasound and biopsies where I was told there was not one lump but two (sounds like I’m talking about sugar cubes haha).

Went in to the registrar after all of this in a bit of a daze to be told that the lumps do look suspicious. One of them is apparently about 2cm and the other just in front is much smaller. Apparently they were quite impressed that I’d even spotted the lump in the first place because of its size. There doesn’t seem to be any sign of lymph node involvement at this stage.

So now I’m waiting. Next appointment is scheduled for the 7th June providing the results are ready then because of the upcoming bank holidays. I was asked if I had any questions yesterday but I was shell-shocked and it’s only now that I’m having lots of questions popping into my head. Not least of which is how high are the chances of lymph nodes becoming involved during this wait?

On a lighter note, while sat in bed this morning still trying to get to grips with what has happened, I’ve had a letter from my GP practice to say I’m due for my cervical smear. Timing couldn’t be worse but couldn’t help but laugh when my husband showed me the letter. I mean talk about timing . I’m still going to get myself booked in of course. If this experience has taught me anything it’s definitely to not delay!

So yeah, that’s me. Not sure where I was really going with all of this but I guess I’m hoping to connect with anyone else who is in a similar boat right now or anyone who just has any pearls of wisdom

Hi KChest

Without wishing to sound patronising, well done for taking action. Your initial situation sounds a bit like mine - I spotted two small freckles on my areola. GP could only find what she thought was scar tissue from a fibroadenoma removed a long time before but she referred me anyway. I had 5 different diagnoses from that to post-surgery. I too had two lumps (one of each type), one buried between the ribs, and was old enough to just say take the damned thing away please. 

Bearing that in mind, I don’t think anyone could say to you that it will be fine, there will be no node involvement. A sentinel node biopsy might provide the answer but, even then, you wouldn’t know the extent of the spread till after surgery. But think about what the lymph nodes are there for - to capture and contain nasty cells. So if there is some node involvement, it means they are doing a good job. It doesn’t mean the disease has spread elsewhere in the body. You will have an MRI, a CT scan and bone scan at some stage and you’ll know if it’s spread or not. Usually ‘or not’. Between now and treatment time, the risk of spread to the lymph nodes can’t be high or your consultant would have you straight on chemo (for instance, if you had the triple negative form of bc which is very aggressive and hard to treat). Since they are in no rush, presumably your bc is hormone-receptive, which will be good news.

We rarely think to ask the questions we want answered. In pre-Covid days, it was normal practice to take a partner or friend to take notes about what you’re told (it will go in one ear and out the other, no matter how hard you concentrate). Ask if you can have someone with you (probably yes for a consultation and no for a treatment) and have a list of questions written down. But be very sure about how much you want or need to know and how much you can handle. Unfortunately once you’ve heard something you didn’t wish to hear, it can’t be unheard. So work out if you are the forensic patient who needs to know everything, peruse every report, view every scan image in order to feel in control of treatment, or if you’re the ostrich patient who just wants to get through it all with only the minimal information - or are you somewhere between? I was an ostrich, by the way. It suited me fine.

You will find this whole experience involves a lot of waiting. If you’re wise, you will use that time well, focusing on building up your fitness and resilience for whatever treatment pathway is decided on. Don’t Google. It feeds our anxiety, is usually way out of date and certainly isn’t tailored to your unique cancer. Worse, it doesn’t give a toss about emotions. It is incapable. Practise relaxation, meditation, mindfulness, anything that will be of use IF you have to undergo one of the tougher or longer treatments. Above all, be patient and kind to yourself. If you feel crap, lie down. If you feel angry, warn those around you and don’t push it down. If you lose appetite, go for snacks, a handful of something every couple of hours, rather than regular meals.

I think in the early stages, most of us picture these nasty little cells running rampant but actually most forms of breast cancer develop slowly so you’re probably not at risk. If you learn that one of your tumours is triple negative, the picture may change, it may not. When I bemoaned the fact that my TNBC went undiagnosed for 18 months because of Covid, lack of GP support and the sheer unlikelihood of developing a secondary tumour in the eye socket/behind the nose, my oncologist said it wouldn’t have made any difference to the treatment I’m having or its effectiveness - and I’m doing rather well.

Sadly there are no guarantees in this. Each breast cancer is unique. It’s not just different types, different locations, it’s also different mutations, genes, DNA (how much more unique can you get?)… But now is not the time to learn those things. Stick with things you are comfortable with, keep your feet firmly on the ground and don’t think about the bad stuff for now. It might never happen - but what misery you will have experienced for nothing! Wishing you all the best,

Jan x