Likely breast cancer after ultrasound - thread 4

[spartanrunnergirl]

Hi all!

Thought I’d start thread 4. I’ll put links to the previous threads below.

Welcome.

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).

Three 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💗

Sorry -only just seen this. It was a session every day for five days which seems fairly standard. Each session took about five minutes.

Waving to @Lovewine1975 and @PoptartPoptart , good to hear of progress. I’m now just over a year out of chemo. I’m a bit rickety thanks to the anastrozole but glad to have whatever extra protection against recurrence available. It’s amazing what you get used to, eh? I’ve definitely got a better balance of things life-wise now and really appreciate being out and about after an enforced few months of meh at home thru the worst of the chemo.

@dibly the same happened to me. I knew that I had got through the first op and thought, well, have at it for the second. It’s not good though, having got over the big hurdle and thinking that the next stage will be along, then having a hold up. Glad your surgeon is able to delay radiotherapy. A break is a good way to clear the mind and to gather strength (as much as the mind can be cleared with everything we’ve had going on).

Waving to @dancingwhilstfacingthemusic I finished active treatment in April last year (4 x EC 12 x Paclitaxel, lumpectomy, 15 x radiotherapy). @dibly please keep up your physio, as you need decent mobility for radiotherapy, and it might be worth seeing a physio for the cording as they can massage it away (I had cording and the physio sorted it out). Sorry you have to have more surgery.

@BatshitCrazyWoman waving back. So many friendships forged in adversity - blooming incredible women and their back up teams.

To those of you newly or still in the trenches, keep going.

@BatshitCrazyWoman good to hear you’re doing well.
it is crazy what we get used to. The unwanted lingering side effects are just part and parcel of life now. But it’s a small price to pay I guess
It’s also good to hear you have a better life balance now. Big events like this do make us stop and think about what’s important I guess.

@dancingwhilstfacingthemusicgreat your doing well and enjoying getting out! I’ve got a few aches and pains the worst thing is not being on HRT anymore but it’s definitely a small price to pay.

This whole experience has made me realise how resilient I can be, how resilient we all are on this group and have helped each other through such difficult times ❤️

Hi unfortunately it looks like I am joining this thread but appreciate all the support it seems to offer . Just been diagnosed with grade 2 invasive ductal carcinoma , oestrogen positive today I have two tumours on the right breast the location of which means recommending a mastectomy (one is 27mms the other 20mms)
I have very dense breasts apparently so I am awaiting a MRI with contrast to make sure there is nothing else .(they better not find anything else I started this process with one lump and collected another at the biopsy stage so not sure my nerves could stand them finding anymore!) I had a clear mammogram in December too so it’s a bit of a shock to now have a diagnosis although I was advised at the biopsy it was likely
Hoping to avoid chemo so hoping for a low number on the oncotype test
I think my biggest concern at the moment is how I will cope without my HRT and the thought of 5 years of hormone suppressants. I was a nightmare to live with pre HRT so my DH is slightly scared those dark days may return

Welcome @Puravida23 . I was also told I had dense breasts and had to have CT and MRI. It was very nerve-wracking. They didn’t find anything else in these scans, although the sentinel lymph node biopsy done at time of mastectomy showed some cancerous cells in one node so need chemo, which starts this Thursday.
Re the stopping HRT-this was what scared me most, the idea of coming off it. I’ve been on it for years. I came off it around the time of the first biopsy which would be back in late Jan/early February. I found I have gone back to horrible night sweats, especially now in this heat, but the mood swings and grumpiness have not returned, thank goodness. I’m not sure what age you are but I am 63 so at a different stage from when I originally started HRT.
i believe there are non- hormonal drugs that can be taken to alleviate night sweats but really for me no point to look into that til chemo is out if the way. I was very happy on HRT but it is what it is and am managing ok on the whole.
Also not keen on the idea of 5 years of drugs. We all have a lot of mental adjustments to make as we find out what the treatment involves. One step at a time though.
Good luck with your MRI scan and try to keep busy while you wait for results.

Hello @Puravida23 and sorry you find yourself here too. I haven’t posted since my inital posts since diagnosis a couple of weeks ago.

It sounds like we are starting out in very similar boats. I too have grade 2 invasive ductal carcinoma (er and pr positive, her 2 neg), with two masses in the right breast (second one seen during biopsy). Due to the locations the surgeon is recommending mastectomy. I have to have an MRI on Thursday to check everything first though. Are you thinking of having reconstruction? I meet with the plastic surgeon in a couple of weeks.

Wow @Stumbleineit does sound like we are on a similar journey
It will be lovely to have some support and someone to share it with at the same pace.
I am looking at reconstruction probably using an implant
As much as I would like to lose some of my stomach fat it sounds too invasive for me .
I guess my main concern with implants is the risk of having to have implants replaced in years to come if needed .
What are other posters thoughts and are you pleased with the choice you made?
I left the meeting today with loads of literature so I am just trying to wade my way through it and trying to find that balance between being informed and not freaking myself out

@Puravida23yes, it will be good to have the company as we deal with this.
Apparently implants aren’t a good option for me (not keen regardless) so it would be DIEP flap if I go for it. The recovery feels like a scarily daunting prospect though…I’ve had a few operations over the years, and up until my hysterectomy a few years back I felt kind of invincible. That one really wobbled me though and tapped into a physical and psychological vulnerability I hadn’t felt before.
I’ve surprised myself by leaning towards reconstruction at all to be honest. But, I guess nothing about this shitty journey will be predictable!

@Stumbleine i do relate to the vulnerability. I have always prided myself with being extremely fit and exercise and run at least 5 times a week . Up to now other than HRT ( which may have been my downfall) I have taken no regular medication and never see a doctor other than checks and felt confident in my body.
I was also not expecting a cancer diagnosis as I felt I would have felt something off with my body.
The lump I found was extremely high on the chest above the breast so thought it might be muscular from over exercise , it is on the edge of the breast tissue I only got it checked out because it just wasn’t going away. And was fairly confident it wasn’t cancer as had been given the all clear in December
So this diagnosis has really made me doubt myself and wonder what else could be going wrong unnoticed particularly as they found another lump at the ultrasound
i am beginning to learn that cancer is equally a mental challenge as well as a physical one

Hello @Puravida23 , welcome to the club.
I had a lumpectomy and sentinel lymph node biopsy 2 weeks ago. Follow up with the surgeon was today and he got clear margins on the tumour. The lymph nodes were clear!
For me that means some radiotherapy and then tamoxifen for 5 years. In the grand scheme of things this seems a positive outcome!
I am not that worried about the radiotherapy, but not looking forward to tamoxifen.

Sorry to those who newly find themselves here. I had a mastectomy/ reconstruction nearly 2 years ago. Recently, my breast nurse has said that the newer implants may not need changing after ten years, so it’s worth talking with your team.

Hello,

Thank you to everyone who has shared their experience, I’m sorry you have gone through it. I noticed a large lump in my breast, which seemed to appear from no where, my heart sank.

I went to the doctor who was concerned, he referred me on the 2 week wait. I had a horrible feeling during the 2 weeks but tried to be positive. That positivity quickly evaporated after the scans, ultrasound, then mammogram, then biopsy. The surgeon told me he was very concerned and that it was very likely breast cancer and he would love to be wrong, but doesn’t think he is. They sent me for a CT scan to see if it’s spread as they are concerned about my lymph nodes.

Im 36 with two young children, I don’t have a diagnosis, but my mind is going to very very dark places. I’m not coping, I’m barely eating, retching, crying, but holding it together in front of my kids.

I am so so scared, I want to be brave but I’m not. I’m so lost, I’m just coming out of postpartum depression.

Sorry, bit of a brain dump.

Welcome @Imtiredthisyear . I’m sorry to hear this . Your story sounds very similar to mine even down to the words that the surgeon used. For me, the wait was awful but in hindsight I see that they needed to get all of the tests done before they could confirm the diagnosis. During my wait I went from periods of doom to thoughts of apathy due to the time wait ( eg if it was serious they would have said ) in reality it was because they needed everything to make an informed decision with me . Once I found out that it was cancer on the 14th May everything happened very quickly. I had my op to remove it on the 19th and now at home recovering from a lumpectomy. They also took a lot of lymph nodes as they believe it’s spread to some but I have my appointment next weds to find out more plus treatment which is likely to be a combination of chemo and radiotherapy. The more I go through it all the more I hear of this being so common amongst women and as my surgeon told me it it’s caught early enough there’s treatment for it so please hold on in there . Do you have anyone to talk to ?

Oh bless you, that’s such a hard place to be. It really is the worse when you don’t have any clear diagnosis or plan. And holding it together for others takes all the energy you have. I hope all is fine, but if it is cancer, there are many on this thread who have walked this path and understand what you are going through. Most will say that things get easier once a plan is in place. Sending you strength and permission to cry those tears, because you need to. Do you have real life support?

You’re both so lovely, cue the tears. Thank you for taking the time to respond, I’m sorry you can relate.

I have wonderful support I'm very lucky. I have a pain condition, so pain is normal for me, but I do feel the back pain has been worse, I’m so worried it’s spread.

During my postpartum depression I developed a really deep fear of death and leaving my children. I managed to get it under control, and felt like I was coming out the other side. I’m quite strong in lots of ways, but I have a really weakness when it comes to health (past trauma) and I’m spiralling.

Im very private and only 2 people know I’m going through this.

thank you for your kindness.

@Imtiredthisyear I am so sorry you are going through this.
The waiting for results part is the worst because you don’t yet know what you’re dealing with. I think everyone that has experienced what you are going through will recognise the sheer terror you describe.
You will imagine every worst case scenario and it’s just horrible. So in a way, this part you’re in the middle of now is the worst bit emotionally. Once you have a formal diagnosis and a plan, things feel a lot more manageable.
I know it’s so so hard, but try really hard to distract yourself while you’re waiting (kids are a great help with this!) Read books, watch mindless TV, keep busy.
Make sure you come on here and post again when you have your plan going forwards. So many of us can relate to what you’re going through and can give practical tips for whatever treatment you may face.
I’ve just finished 10 months of surgery, chemotherapy and radiotherapy. It wasn’t nice, but it was no where as horrific as what I had imagined in my head. It was all manageable, even though it felt so bleak at the beginning.
Please take care and the best of luck for your results.

I just saw your update after I posted.
Just to say, I have chronic back pain. I’ve had prolapsed discs in the past and all sorts of issues.
When I was diagnosed with breast cancer I was convinced that it had spread to my bones and that was the reason for my increased back pain. They gave me an MRI and CT scan and thankfully it hadn’t spread, even though I had convinced myself it had. The anxiety and worry makes everything worse and I was working myself up into such a state and making myself worse.
Mention your concerns to your team and hopefully they can help put your mind at rest.

@Imtiredthisyear I had awful post partum depression too, although a long time ago now, and also have issues with chronic pain that predate my cancer. I have a neurodivergent diagnosis and think that makes me more susceptible to hormonal stuff. I thoroughly agree with previous poster that finding distraction will help. Anything mindful like art and colouring works well for me, plus audio books and podcasts. I have been doing a course on the headspace app. You will get through this awful time. Just remember is is also ok to feel all the feelings x

You’re all so kind and generous to reply to me, especially with everything you have all had to deal with.

I think one thing I’m finding quite hard is that everything triggers it, looking at my children, talking about birthdays and holidays, so I’m finding it hard to distract myself.

A festival pass arrived this morning and I started crying, because I was so looking forward to it a few weeks back. It sounds so ridiculous I’m sure, I know I need to get things under control but I can’t seem to.

I always knew that a diagnosis/suspected diagnosis like this would make be mentally very unwell, it preys on my biggest fears.

I haven’t really left the house, It’s early days, 4 days since I was at the clinic. I feel physically sick, Im terrified.

Thank you for sharing your experiences, I know I shouldn’t jump to conclusions, it’s definitely making it worse.

I logged in to the NHS app, the mass seems to be 7cm which is huge, I have a really horrible feeling it’s advanced.

Thank you again for your kindness

Mine was just around the 6 mark so quite big too. Try not to worry about the stage just by the size. Mine was big but in one place so able to scoop it out and it’s stage 2 and told early . Yours sounds v similar to mine. When do you have your appointment to discuss your results and plan ?

Thank you, I’m sorry to hear you have gone through this. I’m glad they were able to remove it at stage 2.

Trigger warning

I started having some really dark thoughts, about not wanting to be here, because I just feel in allot of emotional pain. My family are aware, I won’t hurt myself, but I just don’t feel I can deal with this. I know I have too, I know I’m lucky to have access to treatment.

I so greatly admire those that are so positive, I just feel very afraid.

Thanks again x

please keep talking on here … I felt it so helpful when I was at my lowest … there are so many people here who are living with it and have come out the other side so please don’t get down . I tell you my first world problem currently just to show u how fickle I can be in light of all of this … I’m annoyed that I can’t get my hair coloured due to the wound healing and this had to be the year I decided to go blonder!!! Before all of this happened 🙄