Likely breast cancer after ultrasound- thread 3

[SpartanRunningGirl]

Welcome. Previous threads :

Thread 1
Thread 2

The original thread 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).

Two full threads 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 💗)

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 breast cancer diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

Sending love - I’m at about your stage (well, decision appointment on Monday - I’m bracing myself). It’s hard. I hope you are better than me at not googling, I’m slightly losing it. Have been speaking with friends who did / didn’t have reconstructions, and implant vs the various acronyms. It’s a lot.

It’s a whirlwind isn’t it? I can’t remember the person I was before all this. Everything seems so consumed with this diagnosis. It’s good that your Trust is moving quickly. I am on day 7 post op. Still sore and feeling sorry for myself.
welcome to the club that no one really wants to join……I have found the support here to be invaluable ❤️

Afternoon everyone! Finally have a bit more information so my cancer is ER &PR -tive and HER2 +tive, with the plan being chemo first with a mid-cycle check to see if it is responding then surgery and a further plan tbc. I totally forgot to ask stage and grade 😣. I have an oncology appointment on Tuesday to discuss chemo. Despite having all my questions written down my mind went blank on the call. Anyone else got a similar situation or any advice? Feeling a little discombobulated.....

Odd question from me: I'd asked my consultant about grade and stage, grade 2 but he said "We don't think about stages anymore" (or similar as though that was passe terminology) - ring any bells for anyone? I thought grade and stage were both still very much in use, and now I'm assuming the worst with his comment.

Have been going private for all this which I expect is broadly ok but it means that all my conversations are with a (cancer specialist) breast surgeon and I feel like oncology is missing a bit.

My cancer also wasn't staged, I was just told Grade 3 at diagnosis. I'm also private, and have regular appointments with my oncologist?

Thank you. I have the follow-up (and hopefully treatment plan) on Monday, and may query it again. I understand that he has spoken with an oncologist, but I haven't, which feels odd. BUPA, when I rang up for a mammogram when this whole thing began, assigned it to a consultant and I did find it odd that mine was a "Mr" (surgeon) rather than Dr. I understand that breast cancer diagnoses often entail a surgery, I'd just like a little more oncology I think. Or to know his oncology credentials possibly? No idea. I may go for a second opinion before we start down whatever path, for my peace of mind.

I'm trying not to be too hung up on Stage/ing given what I hope is early and treatable cancer, but his reticence made we worry he was hiding something.

@JustGoClickLikeALightSwitch I asked about stages and was told the same, although my consultant said if he had to give a stage it would be 3.

I didn't speak to an oncologist until I started chemotherapy, the diagnosis and everything before that was dealt with by my surgeon. Your case will have been discussed with at oncology at the multi disciplinary team I would have thought x

Thank you - that’s reassuring. I like facts, is my problem

I’m under the NHS for my treatment.
After my initial biopsy when they confirmed the type of cancer (triple negative in my case) they told me Grade 2. The grades are 1-3 I believe and it refers to how quickly or aggressively the cancer is growing.
I was also told they don’t ‘stage’ the cancer at this point.

I only saw a ‘Mr’ too - a surgeon - up until this point, and a breast care nurse who was lovely and far more informative about practical things than the surgeon.

After my surgery I saw the surgeon again. I asked about the ‘stage’ again and he said in my case, it was a grade 0 - because they had fortunately managed to completely remove the tumour, so technically I didn’t have cancer anymore.
I imagine if the outcome of surgery had been different they may have been able to ‘stage’ it at this point maybe 🤷‍♀️

After surgery is when you will be passed to oncology.

I hope this helps reassure you a bit.

Thank you @PoptartPoptart , it does .

Getting ready for the holidays here while the kids are out and a bit of a mess, but off for a walk with a friend in a bit.

Love to everyone here.

I was told I didn’t need a post surgery bra for a lumpectomy and they were only needed for mastectomies by my bcn.
I’ve been told soft crop tops with pads out from primark or Asda?

Can I join?
diagnosed 4/12 with grade 1 NST, dcis in situ, er7 + her -
mri was 8/12, another appointment 18/12 and lumpectomy booked for 22/12.

radio likely with hormone therapy 5-10 years.
I have a tendency to have very catastrophic thoughts and this is making me highly anxious and terrified of the unknown and uncertainty

My doctors only really talk about stage if I mention it.

@ohdoriswheresthesalad I’m so sorry about your recent diagnosis.
It is completely understandable and normal to be feeling this way. I think every single person on this thread has felt exactly the same at some point. The uncertainty and unknown and the waiting is always scary, but the good news is that the reality is almost never as bad as you imagine.
Sending love and positive thoughts 💕

Thank you ☺️
yeah you are right. I think the reality won’t be as bad as my thoughts but they overtake me sometimes and I cat get out of my own head.
I’ve convinced myself I’ve got to have a mastectomy now 🤦‍♀️

@ohdoriswheresthesalad some cancer charities offer complementary therapies and counselling services. It might be worth looking into what’s available in your area.
I had three hypnotherapy sessions for heath anxiety and it did help. The sessions were completely free, but I did make an appropriate donation each time I went.
Maybe have a look online what you can find near you or ask your BC nurse if they know of any services in your area.

@PoptartPoptartthank you that’s helpful advice. One bcn did mention referring me to psychology to help me but nothing more has been said.

Keep asking and reminding them.
One thing I’ve learnt is that you really have to advocate for yourself and what you want/need.

Has anyone had any experience of their plan changing from diagnosis to procedure? Or the diagnosis changing to worse?

@Lovewine1975 how are you getting on? Haven’t heard from you for awhile? Hope all is going ok with your treatment x

Does anyone know whether the unit will provide you with a surgical cap if your hair is thinning in a patch and you want to carry on cold capping?
or link to something thats suitable to buy

i think i have a spot thats gone very thin and am annoyed if this stops me continuing to try to save my hair.....

thanks

@PoptartPoptart Thanks I am ok, this time round has been quite tough and I'm still feeling tired 10 days later, also my hair is a mess which is annoying me. I have quite a bit left still but as your not meant to brush it or use products etc its just gross so wearing a hat to cover it up!

Hope your doing ok though? x

Mine did.

Glad you’re doing ok. I can sympathise with the tiredness, it’s very frustrating.
I also know what you mean about hair, although I was told to give it a gentle brush each day to free any loose ends.
I’m trying to only wash it once a week using a really gentle shampoo and conditioner but it feels gross as I’m used to washing it every other day.

My next lot of chemo isn’t until the 2nd Jan now, so I get a lovely 3 weeks off instead of 2, which feels like the best Christmas present ever this year!
I’m also now going to be having weekly Paclitaxel (9 cycles) instead of fortnightly. This was at my request as all the research I did suggested that the side effects are slightly less with weekly infusions as the dose is lower. My oncologist was happy with this so we’ll see I guess!

Stay well x

Had my follow-up consultant appointment today. Again foiling my expectations - I expected a date for surgery, like, now, but actually:

He'd like BRCA testing, which takes three weeks to come back
Still waiting on HER2 results (any day now)

My eleventy billion extra biopsies came back. One extra DCIS in addition to the Grade 2 cancer in the same breast. Lymph nodes seem clear but he's suggesting a sentinel node biopsy during surgery.

So for now:

• BRCA testing

• January time, mastectomy (as it's now looking).

• May need chemo before surgery depending on HER2 (hope I understood that correctly), may need chemo after depending on sentinel lymph node results.

Told my parents who were VERY tearful, told a cousin I'm close to. Close friend came along for the call this morning which I was grateful for. My work is a whole other thing, because I effectively run a charity which means I have a whole lot of volunteer support but no paid backup - so I've told my trustees for now, and key people.

Did my taxes, did a heap of work admin this weekend.

I'm off to see a plastic surgeon in the Shard later this week, definitely not on my bingo card for 2025 but there you go.

Quick question: at the moment I feel like I have to/am leaning towards reconstruction if it's a single mastectomy - because it'll be a faff with prosthetics, bras etc otherwise - but if double is recommended I'm very much - nope, don't need 'em, just surgery please. Is this ringing a bell with anyone or have I lost my mind?

Sending a lot of love to everyone here, especially if you're having a hard time with treatment and intervention.