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💗

Thank you, I really appreciate that. I remember reading somewhere that at this point, your “risk” is no different to people who have never had breast cancer. Or something along those lines. I will post about risk and other things soon as my story is probably something worth discussing here. I agree that even post treatment, you feel a bit like you’ve lost a security blanket and the whole process somehow leaves you feeling protected and then it’s gone! However, I’ll save that post for another day as I’ve just woken up on the sofa and it’s 2.30 am 😆. It’s been a long week. Again, thank you for your good wishes ❤️

Sending positive thoughts @TheFormidableMrsC and I hope you aren't waiting too long for the results.

@BatshitCrazyWoman hope you're feeling ok today!

@TheFormidableMrsC fingers crossed you aren't waiting too long

I haven't started the yearly mammograms yet as I only finished treatment in March but here's one thing I do know about the recurrence risk. Whatever the statistics, I have a massive advantage over others because I will now be extra vigilant - as will all of you. That has to be a positive right?

Thanks @SunnyValemin - I feel okay in myself, but I ache literally all over, I'm freezing cold and my skin feels a bit tender (I always get this feeling if I have some sort of virus). And I didn't sleep well at all, so I'm on the sofa under my heated blanket 😬 Hopefully it will pass quickly 🤞🏻

@BatshitCrazyWoman hope you’ve managed to get some rest and are feeling less grim today.

Don’t want to be a misery but for my type of cancer (hormone driven) I read the the risk doesn’t reset to background after 5 years but increases. I would really love it if someone could give me the evidence that it does reset - would love that.

@Yamyamabroad thankyou for the positivity there. X

@BatshitCrazyWoman fingers crossed it passes quickly!

I forgot to take one of my tablets yesterday for the first time in 6 months of taking them! I'm taking that as a sign I feel a bit more relaxed about it all, but have upped the reminders on my phone so it doesn't happen again 🤣

I’ve even got reminders for the dog’s daily steroids on my phone! Glad no longer to need the two pages of alarms from during chemo.

I’ve still got bruising / discolouration from my filgrastim injections 6 weeks after the last one. The final jab gave me a bruise as big as my hand. It looks like a huge birthmark - anyone else had this?

Hi all
Liz O’Riordan’s recent vid - I think is v good.

I did the first part of the BCN Moving Forward course last week. Absolutely balled my eye out at the beginning. Thought I’d be ok but then I started taking about fear of recurrence and worrying about my daughter’s risk and that set me off! I was in two minds about it as I tend to power through stuff, but actually that release of sharing my worries and the impact of the cancer was good therapy for me, recognising that whilst I’m ok, it’s also ok to be not ok and to recognise the change in you.

It was really good to be with a group of women who have all had BC and sharing stories questions etc was priceless (I did the in person course- don’t think online would have worked for me). I am fortunate to have a good network of friends but there’s only so much they can understand or support. Being with a bunch of women who ‘get it’ was priceless. Got part two next week which is about looking forward.

@MrTiddlesTheCathope you are recovering well now post op.

@TheFormidableMrsCall good wishes for Monday. A big milestone and I can’t imagine what that is like - hope you cope ok with the emotions of it and the wait for results is not too draining xx

@Bimblesalong I too have read that hormone sensitive recurrence is more likely post five yrs ☹️. My mum and aunt both had hormone sensitive and both had recurrence + 10 yrs after. With my positive hat on - I’ll take that, but fuck sake when I’m feeling anxious I just see years of worry! Luckily that’s not often. I was out running today and remembered I’d had cancer, which was a great feeling because for much of the day I hadn’t though once about it 🎉

I'm doing the BCN Moving Forward course in June @spartanrunnergirl - I'm a great believer in peer support, so I hope I find it useful. I'm sure you weren't the only one to cry.

@Bimblesalong I really pressed my oncologist about recurrence, as I had triple positive cancer. He told me it would be less likely to recur once I got passed five years. Don't really know what to think, tbh 🫤 I really can't do this again, it's been so hard to do it on my own, basically.

Goodness, I didn’t know that there was a higher risk with hormone positive cancer. I remember asking the surgeon if it would come back and he said no. The onc didn’t say a thing. There is a bit of background to my cancer that I believe was entirely triggered by progesterone meds. If there was anybody here who knows me irl this will confirm it as I have spoken about it often but it’s important I think.

In the year before my diagnosis, I was on a clinical trial which involved regular mammos and ultrasounds. At the very beginning of 2019 I received a letter stating two healthy boobs. A couple of months later I started bleeding heavily (peri). I had a copper coil and the gynae GP said I needed to swap for a Mirena. I didn’t want to do this as I had avoided all things hormone but the bleeding was awful and I felt I had no choice. It actually made things worse and made me feel ill. It was removed after approx 3 weeks. GP then put me on Desogestrel (progesterone only mini pill). That didn’t stop it either. She she told me to take two a day. She also prescribed Norethestrone to top it up. At this point I said I was unhappy with this and what was the breast cancer risk. She dismissed me with “negligible”.
However, the bleeding was disabling and I had a young SN child so I did as I was told (should have listened to the voice telling me this was a bad idea).

So throughout 2019 I took this combo. Had my 50th birthday in the Autumn at which point I started to get pain in my nipple. Couldn’t find any lumps but the dull ache continued. Fast forward to Feb 2020 and moving awkwardly to pick up a cup, I felt a weird pull in my boob. Went and had a look and feel and there was a hard lump under my nipple. I had not felt this before. I immediately went to GP, saw the practice nurse who said she thought it was a cyst and I said it wasn’t because it felt tethered. She reluctantly referred me to the breast clinic. A few weeks later I was diagnosed with Grade 2 HER2+ IDC. Fortunately it was completely contained and no lymph involvement. It was also at the beginning of the pandemic!

I remember the surgeon looking very surprised when I said it had been just over a year since I had a mammo (indeed several). I produced my meds and told him how much I was taking and he said “stop them immediately”. He was also surprised at the dosage. It has been impossible to get anybody to talk to me about this except the BCN who agreed the meds overdose was the trigger. We have no breast cancer in my family. No history at all and I have searched extensively. However, nobody else will enter into a discussion about it. It has been yellow carded.

Latterly, I found peer reviewed research which directly links the drugs I was taking with IDC. The dose I had was huge. Over a long period. I believe it’s unlikely I would have got BC if I hadn’t taken that drug combo.

I have a friend who is a Macmillan nurse who suggested I go to Clinical Governance for review. I have yet to do this. I had one consultant tell me that my tumour would have been there for between 4 and 7 years but could not explain why that cancer was not picked up on either mammo or ultrasound. He just got irritated and dismissed me.

I have wondered how many of you have been on any of those drugs prior to diagnosis. I have talked myself into believing that it was a one off event for me and and I hope that’s the case. For most women it is. Recurrence rare is around 30%. That means it won’t happen to 70% of patients and I think that is worth keeping in mind. It was also a relief to find that my own daughter is not in any way at risk because of what happened to me. She doesn’t use any sort of hormone and will continue that way. While I am aware that progesterone only meds now have leaflets that say “can cause breast cancer”, the same risk with Mirena is not widely publicised.

So that’s my story and I’m sorry I typed an essay but I thought it was worth sharing!

I hear you. I was also alone, lone parent, 7 year old SN child, one parent with Alzheimer’s, during the pandemic. It was a tough journey even with really amazing friends who rallied. I literally cannot imagine doing that ever again. I’m manifesting that never happening 🤞

That’s interesting @TheFormidableMrsC . I guess it’s just impossible ti know for sure if the medication triggered it. Mine is both Er and PR positive but I have not had any hormones recently. I was on the pill for about 13 years but been off this for a good 15 years (before kids) now.
I don’t really have strong family history (one very distant relative, but she was quite young) but just had a genetic consultation to do a test next week for breast cancer genes (plus a whole load of others they test for too). I have a daughter so would like to know for sure, although my doctor thinks it’s unlikely genetic.

Absolutely there is no way to know for sure, but it’s a massive coincidence. I have taken a lot from the avoidance of discussion and the dismissal whenever I’ve raised it. I would just like to know. It’s very frustrating. Similarly with the huge amount of women (including my ex MIL) who are diagnosed within a year of starting HRT. Yet it is minimised.

@CheerfulcharlieWhere did you go to get genetic testing? This is something that interests me. Onc said I didn’t need it. I was a bit concerned about Lynch Syndrome as we have a few cases of colorectal and one of uterine cancer. My mum died of oesophageal but she was an alcoholic.

I took HRT oestrogen and progesterone for four years prior to diagnosis (IDC +ER8/+PR7). My GP at the time stressed that the risk of BC was minimal before 10 yrs taking HRT.

When I was diagnosed with breast cancer, I asked my BC consultant if the HRT had caused it and she said not, however of course once the cancer developed I believe I was fuelling it with the increase in hormones. I do often wonder if without HRT it would’ve developed beyond a pre-cancer or stayed as dormant cancer cells.

HRT and menopause are talked about a lot more now with the Davina McCall effect and I think it has such a tremendous positive impact for so many women, but I do think discussion of how it may stimulate cancer once present is minimised.

@spartanrunnergirlI agree risk is minimised. When I was having treatment, a large percentage of fellow patients had developed BC within a year of starting HRT. There was frustration that this couldn’t be acknowledged. As I said earlier, similar happened to my ex MIL. I certainly believe that, while it wasn’t HRT, being prescribed 4 times the recommended dose of progesterone was the reason. I was relieved when there was research to support this. However, having tried to discuss that research, I’ve been dismissed. It really should not be minimised in the way it is. I would never have taken HRT. I always knew it was something I wasn’t prepared to try. I did ask for a hysterectomy and was told by the same GP that it wasn’t possible and I should try her regime first. I really regret not listening to my inner voice.

There are a few of us questioning the support we got and advice when on hrt or other hormones. You sound like you advocated well for yourself but ultimately I guess we trusted our medics.

You’ve heard me say that I partly blame hrt and the lack of informed reviews. I was also given vaginal oestrogen to try. This triggered post menopausal bleeding and I had to go for a scan and womb biopsy. Ouch. I stopped using the cream immediately but at no point did anyone suggest that I could possibly be taking in too much oestrogen iyswim. I feel sad and angry about it. My peace of mind has gone forever, I simply can’t put myself and my family through this again.

I think that’s it isn’t it? Peace of mind. It’s always there, at the back of your head. I’ve always been very positive through my journey and I think I’m just feeling apprehensive because of tomorrow’s mammo but I am angry that I could potentially have avoided this. I think I am going to go to Clinical Governance. Maybe that will be carthartic somehow. I do know from others that it gets easier and recedes as time goes on. Let’s hope that we all remain well going forward.

I think it’s also worth remembering that science is also advancing all the time. There may well be vaccines for people like us in the not too distant future.

Wishing you well tomorrow. I think clinical governance sounds a wise next step.

Thank you @Bimblesalong and yes I think I need to do it.

I think information and clarification always helps. Agree clinical governance could be helpful.
Ironically my GP refused to prescribe hrt because of her concerns. I soldiered through menopause with nothing, then got hormone positive breast cancer anyway.

@TheFormidableMrsC I was referred to the London Genetics Centre https://www.thelondongeneticscentre.com/