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💗

Did you have radiotherapy, and when? I am so swollen and bruised so starting to worry about how long it will take to settle and I can have my radiotherapy

Yes, I had radiotherapy about 8 weeks post op. Had 5 sessions of radiotherapy, thankfully didn’t need chemo.
I am about 4 months post op now, things have settled, boob still feels lumpy but significantly better.

@BlueGirl123 I had a three month window between lumpectomy and starting radiotherapy (15 sessions). You are right, it needs to be precise. On the other hand you might be able to avoid the tattoos that were compulsory for me a few years back. Do ask.

@Devastated99 So sorry you've had to check in. It's a rubbish club to join but the members are amazing and if it is as suspected, you will find you are much more amazing yourself than you ever imagined. We all know that feeling of devastation but once your clinical team have identified what they are dealing with they will swing into action, you'll have a treatment plan, and you will be able to start along the road. It's not easy and we are not 'lucky it's only BC' but you will manage.

Hey everyone! Diagnosed in July 2010 (at 37 yrs old) with triple negative, grade 3 b/c. Wide excision lumpectomy, 6 rounds of T/C, and 25 blasts on the rads machine. Left with pain and yucky lymphoedema in my arm. Had yearly mammogram till 50, then 3 yearly surveillance mammo. Had a scare 2 years ago, luckily 'just a cyst'! And now here I am on a fast track referral for suspected cancer, again. This time it's a hard lump that has grown within my original site. It's hard, and as it's grown from a tiny pinhead size, to I would say, a tiny baby Brussels sprout, all this in the 3 months I've been keeping it under observation. Hoping it's either a harder cyst, a calcification, or a piece of the scar tissue from what the shoved back in it at the time of the lumpectomy. I got my appointment today by phone, was offered Saturday 14th June. Sooo. Fingers crossed 🤞 lol.

@quietmaelstromthanks for your reply. My husband came with me to the hospital so he's up to date on everything and looking after me, bless him. How are you doing now?

Thanks all. I’m going to change my username as I’m kind of over it already. Took 24 hours to cry a lot but now feel ok about things.

Welcome @BlueGirl123 @Tiredandtiredagain @DollyPartonsLeftnip

@DollyPartonsLeftnip you will know the drill from before but the waiting time is still horrible - be good to yourself

@7catsisnotenough glad that your husband is able to support you. It made such a difference that we could discuss things and decide how and when to tell others.

I'm doing fine, thanks. Finished with all the hospital stuff, just trying to find the best ways to deal with the tamoxifen side effects (primarily sleep disturbance)

Good morning everyone! It’s sad this thread is so busy yet so vital. I hope everyone has as good a day as possible.

@AlwaysALargeSauvignonBlanc the appointment with oncologist wasn’t required but having scan on Saturday for the possible affected lymph node in the neck. Hope you are ok.

I had the PowerPoint presentation in the McMillan suite about the chemo which was really useful, I didn’t go into the actual ward as I had an appointment with Breast services, where they mentioned the neck lymph node. It’s all a bit confusing to be honest but meeting oncologist on Monday so can discuss it all then.

No appointments today so having a cleaning day!

@mightneedalargesnifter I'm glad you found the presentation useful. Hopefully Monday's meeting with clear some things up for you.

I am also confused. My BCN just called me about my unexpected apt next week. Answer is, they should have my genetic results back and discussed with the MDT and then we can agree on surgical procedure before my surgery the following Monday.

I'm struggling with being told I need to make decisions. I just want them to take the bloody cancer away. I don't care how they do it. I've told them this. But still, it's for me to decide because 2 surgeons have differing opinions on what is needed.

I've got a letter today stating that what was thought to be grade 2 is now grade 3 (no-one has told me this) and I have high grade DCIS (also, not been told this). Close anterior and posterior margins, I was only told anterior.

What would you do ?

1 - Oncoplastic Surgery with Central Resection - recommended by Surgeon 1 (the surgeon who did my first surgery)

2 - Central Excision / Nipple-Areolar Excision (Surgical removal of the nipple and areola) - recommended by Surgeon 2 (my consultant since initial referral)

3 - Mastectomy - Not recommended as such but I'm wondering if I should be considering ? Obviously, if genetics come back positive the other options go out the window anyway.

Obviously I will do my own research and digesting but I am interested in what you ladies have done / were you given choices etc

Apologies for the awfully long post !

@Skap thanks so much for your response. You’re right, I will most likely throw the kitchen sink at it but I was just totally bamboozled in the moment!

@DollyPartonsLeftnip fingers crossed for you! Thanks for sharing your journey.

@Tiredandtiredagain i sound very similar (grade 3, no nodes) but behind you by a couple of months. How did you find the first rounds, was it EC?

I’m so sorry that you’ve gone to grade 3 @AlwaysALargeSauvignonBlanc.

Sorry for the potentially stupid question but is the test you refer to the oncotype or something else?

The decisions are the worst when you’re under stress!

It seems strange that one surgeon wants to remove your nipple and not the other. What’s the rationale? Mine has been removed but I didn’t have a choice (a blessing as we’re learning!) as I had an area of DCIS immediately underneath. My surgery was called a therapeutic mammoplasty, recovery was fine, and we’ve discussed things like symmetry revision and nipple tattoos once active treatment is over.

@AlwaysALargeSauvignonBlanc How are you feeling? I’m surprised the professionals are giving options, we’re not the experts!!
I have my recall appointment Monday afternoon, can’t believe my life could be upended at this point, i have such nice plans for summer too! Feeling more intermittent aches in my left breast and obviously with the recall I’m thinking the worst.

Puts everything into perspective, I’ve never been so scared, can quite imagine me collapsing or vomiting in there, I don’t like my breasts being touched at the best of times.

Can I join you please? I got a diagnosis on Friday morning. Stage 2 bc. I have to have an MRI next week to ensure it's not spread. The tears won't stop, I feel devastated. Telling my teenage son was the hardest. It's hard to breathe at the moment. I'm sorry for all of the other posters going through this.

@Kottontail I’m so very sorry. It’s all very traumatic, let the tears come. Life was so bloody carefree just a few weeks ago. I appreciate the mri is the next scary hurdle for you.
i hope they gave you support at your appointment. The Breast Cancer Now forum and website is very good, with good podcasts too. Hope you’ve been getting some sleep. xxxx

Do you take it in the morning or at night? I'm taking it in the morning to try to avoid sleep disturbances but my sleep is so disturbed anyway I'm not sure I'd notice the difference. I haven't slept well since biopsy day.

My oncologist said that 1 in 10 women will get breast cancer at some point in their lives. 1 in 10! I had no idea it was so common, and the rate is increasing. We're going to need a bigger thread!

Hi @Kottontail, so sorry you are here. You will find lots of support on this thread and a lot of useful information. Big Hugs 💐

Hi @MonOncle , sorry, I wasn't very clear in my ramblings. The tests results that should be in today are my genetic test results. I'm 40 so was offered this.

Both surgeries involved removing the nipple. My understanding is that the original surgery was trying to avoid it (which I also said I didn't care about at the time) whereas it definitely needs to go now as the unclear margin is that side.
I believe it's a case of deciding whether to go for something quite straight forward and again removing a minimal amount or something a bit of involved, removing more, requiring some reconstruction. I believe this one is also a therapeutic mammoplasty - my weekend reading suggests that the general term for these types of surgeries that involve an element of reconstruction.

@Peachslice I'm feeling better today. I was pretty worked up over the weekend at the prospect of the decision being put on me. The concept just seems bizarre to me. Surely the people who have studied for years and see this day in and day out are far better suited to decision making than I am. But... it's where I am so I just need to get on with it.

I hope your appointment goes as well as possible today and there is no vomit involved !

Sorry you find yourself here @Kottontail . You will find lots of support and reassurance I'm sure.

@mightneedalargesnifter how was Saturday's scan ?

Hi @AlwaysALargeSauvignonBlanc
scan in neck area was clear so that means I can go on trial for single lymph node removal which is good news. Just waiting at the hospital to see oncologist think just to sign chemo paperwork which starts 27th June. This is my chance to request a port instead of a picc line. I’m going to try to be assertive… 🤞🏻

Amazing ! That's great to hear.

Channelling all of the assertive vibes over to you

Thanks @MrTiddlesTheCat - I take it in the morning

Best wishes for the appointment @Peachslice

Welcome @Kottontail - sorry you need to be here but it is a very supportive place

Good news @mightneedalargesnifter

@AlwaysALargeSauvignonBlanc it doesn't seem very helpful and sounds like they haven't communicated the options very well if you're having to do a lot of reading around them.
Usually if there are options and the professionals aren't giving clear guidance towards one it's because there genuinely isn't evidence that that one is better than the others - but they should sit and explain that and take you through the process of making the decision, helping you to work out which aspects of each option are relevant and important for you.

Thank you all, back from Breast Clinic. An area on my left breast has shown calcification 7mm, Dr who did US said it looked ok but only biopsy can show if it’s pre cancer or early cancer, so core punch biopsies done with marker inserted that they said unfortunately is quite close to surface and appointment for next Monday morning for results. Feel exhausted now, headache and sick of having fingers crossed. Hope you have all had an ok day xxx