Likely breast cancer after ultrasound - thread 2

[spartanrunnergirl]

Welcome. The original thread (linked here ) was started after I had a mammogram recall and was told at the ultrasound that it was likely I had breast cancer - before biopsies were taken, and before I was ready to hear that (if you are ever ready to hear that).

I drove home gulping down tears with no idea what to do and no idea how to get through the days until my biopsy results. So I opened Mumsnet and made the original post, hoping someone might read it, and they did! One full thread later we are still sharing support, experiences, and advice. We’ve celebrated breast cancer wins and thrown virtual hugs around those who’ve needed it. (We’ve all needed it 💗)

For anyone opening this thread because they’ve found themselves in the same situation I was in … this is a hugely kind and caring bit of Mumsnet - where we’ve all felt that awful fear waiting for scans, tests, results, or with an early and uncertain diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

I find it really frustrating. I was taking a huge dose of progesterone (prescribed) in the months leading to my diagnosis for peri bleeding. I queried it at the time as I was concerned about cancer risk and was dismissed. I hadn’t had any hormonal contraceptive in more than a decade. I was told to come off it immediately. My cancer was HER2 +.

I have since found peer reviewed research linking it to my type of cancer. I have tried and failed to discuss this with various consultants who insist it has nothing to do with my diagnosis. It’s frustrating beyond belief.

@spartanrunnergirl that’s fantastic news!

My cancers are both hormone positive and I was told at diagnosis to have my contraceptive implant removed asap. I haven't even needed it for a couple of years due to being happily single but someone had told me that it can help regulate hormones during perimenopause so I'd just left it in...

@cannaecookrisotto yes please let me know what they say.

I actually spoke to my BC nurse today (about something unrelated) but I did mention the fact that I had been told by my oncologist can carry on with the mini pill yet I know of other ladies who have been told otherwise. She didn’t really know what to say except that I need to trust my oncologist’s expertise 🤷‍♀️

I know exactly what you mean! I used to try and prop my arm around the pillow so I could still sleep on the picc side, but not often. It was too sore to sleep on that side the first few days anyway xx

@spartanrunnergirl
Amazing news for your clear mammogram! I imagine the worry leading up to it (I’ll be on the bloody ceiling) so it must be such a lovely huge relief xx

@TheFormidableMrsC
I understand your frustration completely, especially when you present them with peer reviewed science. They should at least have the conversation with you!

@PoptartPoptart
I’ll ask my Onc and report back, will be good to compare their notes on it for us both. The surgeon at my original diagnosis appt also told me to stop
taking immediately but all my sensible questions go out of the window and I’m a bit of nervous wreck. So I have to take a notebook in.

I posted here about my lymph node saga (they told me to expect biopsies to come back lymph positive due to enlargement on US, but the came back negative - so they suspected false negative and sent me for second lymph biopsies).

Well I had the second biopsies done. The radio consultant was aware of the purpose for the second biopsies, she located the enlarged node and took 4 biopsies from it. She also inserted a metal clip.

My BCN called today, those repeat biopsies have also come back clear.

Oncologist is a bit perplexed I think. BCN said that the Onc actually rang the radiologist and queried her “sampling placement”. The radios response was that she was absolutely certain of her sampling placement and took a thorough representative sample with 4 biopsies. And that the science has spoken basically 🤷🏼‍♀️.

BCN says they’re going to discuss again in this weeks MDT.

When the radio was doing my biopsies, she was explaining that lymph nodes can be enlarged for more reasons than just cancer, even a cold can cause them to look a bit suspect on a scan.

So I have to believe that I’m actually lymph node negative. Tossing lymph nodes giving me a
headache!!! 😂.

@TheFormidableMrsC it’s both frustrating and scary when we put our trust in the ‘experts’ and then something like this happens. The worst part I can imagine is that you cannot even get them to talk to have a proper conversation. Have you been to PALS or got any other advice at all?

@spartanrunnergirl It’s always great to hear good news - I’m very happy for you 😊

@cannaecookrisotto Also great news about your lymph nodes! You must be relieved after all the back and forth.

Brilliant news @spartanrunnergirl My first mammogram post diagnosis and treatment is coming up next month I think. I'm very firmly not thinking about it ....

Good news about the lymph nodes too @cannaecookrisotto

Popping in to wave at everyone before heading over to the new thread, where I will try to remember to revert to the name that people knew me on through treatment, dancingwhilstfacing the music!

Keep on buggering on, everyone.

@cannaecookrisotto brilliant news about your lymph nodes, must be such a relief!🙂

@PoptartPoptart thinking of you today, hope your first chemo goes well for you and you don't feel to poorly xx

@Lovewine1975 thank you so much for remembering x
However… they have pushed my start date back by a week, so I now start next Friday 31st (Halloween 😂)
I’ve had a couple of issues with my port dressing coming off and they were concerned about infection so they moved the date just in case 🤷‍♀️
It’s frustrating because I had geared myself up for it today, but at the same time I did feel mild relief because I’m dreading it so much. It’s always such a rollercoaster of emotions all the time, as everyone on this thread knows all too well!

@PoptartPoptart oh god how annoying, like you say get yourself all geared up for it to be cancelled. I suppose they were just being cautious, but didn't you say on one of your previous posts they weren't going to use it. Sure it will go ahead next Friday and enjoy a week of some kind of normality, because if your like me nothing feels normal at the moment x

@Lovewine1975 no they weren’t going to use it but they were worried about infection as the wound had become exposed 🤷‍♀️
I’ve got a letter now stating I’m definitely booked in next Friday (and a bit earlier this time too which is good!)

@PoptartPoptart good luck for tomorrow - hope it all goes smoothly and is not as bad as feared.
That will be me next friday, so I have the nerves already god knows what you are like. Probably gets easier when you are there rather than anticipating it.
Anyway wishing you well.

Hello all. I had a message yesterday that linked to a letter with an appt at the breast clinic next Tuesday to follow up my recent mammogram and biopsy. Nothing else on the letter. I’m on holiday though till the Wednesday so will need to change the appointment.
feeling a bit anxious now

Your experience is exactly the same as mine.
Ive got to go in for the results Monday.

The breast nurse said she was very concerned with my lump and they were all straight faced from the ultrasound/biopsy onwards checking I had someone with me.

My brain isn’t being my friend since the appointment. The anxiety is awful.

The anxiety is really crippling me now. I’m terrified

did you see your mammogram image? I could see a lump on mine

Yes I did see the lump, I really wish I hadn’t. I saw mine when they did the ultrasound.

Im terrified too.

I know that this thread is about diagnosis but just to add a positive to the pot, I was diagnosed 4 yrs ago, had surgery followed by radiotherapy. The Oncotest ( gene testing) result on the tumour suggested that chemo would not reduce the risk of recurrence or spread so I didn’t have to go through that nightmare.

I had my 4 yr rev last month and my results came back me back on Monday with no evidence of disease. This is the up to date terminology for remission.

We only really hear about the negative outcomes, but many women are treated successfully and go on to live for many years without the cancer coming back. With more and more treatments being developed to treat secondary breast cancer, even if it does return it may be possible for it to be treated as a chronic condition in the future.

Over 90% of women diagnosed with breast cancer will survive at least 5yrs. Most of us go on to enjoy a life after cancer and don’t really look back so often have no reason to broadcast the fact. But it is incredibly difficult to be positive about this statistic when we only hear about the sad stories.

Just coming back to say that mine is scar tissue from the biopsies & placement of the measure back in March so it’s go away, keep checking the girls and go back if anything else pops up (feels like a weird game of whack-a-mole at the moment tbh) with mammograms all scheduled.

Hope everyone else is doing ok.

@Angrymum22 thank you for sharing your story and its good to hear positive stories, I'm about to start preventative chemo followed by radiotherapy, I'm scared about the future and so your story makes me feel more hopeful

My biopsy results meeting is tomorrow morning. I’m so nervous.
I doubt I will sleep much tonight

All the best tomorrow @LoudSnoringDog at least you’ll have a plan if the news isn’t what you’d wish. That makes things more manageable but I wish none of us were in this pickle.

there’s a thread three on the go - pop yourself over there for some company when you’re ready to 💐

I've got to go back to the breast clinic on Monday because I feel a bit of a lump right at edge of my breast against my ribs. The breast nurse said over the phone it was most likely muscular given the position, and to ask the breast cancer physio to look at it at my upcoming appointment. Physio couldn't say 100% that it was nothing. So back I go.