Hi @newtotheclub and @nikkicole I’m also her2 pos but hormone negative x
@salbert don’t feel guilty at all! Life is for living sbc nobody knows that more than us.. post your trips and I personally shall live vicariously through them!
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Thank you @salbert forthe profile pic love, Thus is my head shot .. for a calender I’ve taken part in , it’s to raise money for the North Wales cancer centre and it’s a group of breast cancer thrivers in very cheeky poses!
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Another one in the her2 pos, hormone negative camp here 
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Hi there @hedgehog
I think there are a few of us who are hormone negative now x
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So finally seems I’ve got to the bottom of my weird symptoms that have gone on for 17months & show no signs if going away but getting worse. My mri neck scan was clear but the full brain spectrum scan showed more damage.. I was diagnosed gluten ataxia 5years ago. Been strictly gluten free ever since and they thought that was the end of that so did I!!! A simple fix when u think what us breast cancer survivors go through with aggressive bc treatment! My markers are all still very good. 12years clear of bc is definately worth celebrating and with risk.of bc recurring not entirely gone but miles lowr I was cheering!
But no my body has now decided on a new mission: to attack it own brain. So its not cancer but my body is killing it self off with an immune system that has gone rogue!! . I have to go in for infusions/treatments lots of blood tests checks at hospital as they attempt to stop it and if sucessful long-term checks treatments. Im in shock tbh… How could my body be so stupid!!! 
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Hello lovely HER2+ people. I’m triple positive. (ER8/PR8). Had neoadjuvant TCHP. Had lumpectomy on 12 September with 2 Sentinel nodes removed. Received my pathology results this morning from oncologist and they got clear margins but unfortunately I have a 2.5mm macro-met in one of the lymph nodes. I’m so shocked and devastated as nothing showed on any scan. I’ve been told I now need full axillary node clearance surgery before radiotherapy, Kadcyla (didn’t achieve pcr but was already expecting that) and aromatase inhibitors. I’m going down the rabbit hole that my prognosis is now very poor and it has spread all over my body because I only had a partial response to TCHP. I’m seeing breast surgeon next week to go through everything. Did any of you need full axillary node clearance and if so, what can I expect? Thank you x
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@waveylocks It baffles me when I think of how our bodies seem to turn on themselves while at the same time trying to heal themselves. I’m celebrating the 12 years clear of bc with you while simultaneously wagging my finger at your immune system’s transgression. I’m so sorry you’ve had this news and am sending you a big hug.
Hi @alpacagirl , I am also sending you a big hug because I remember well how devastated I felt at hearing that my bc was in 2 lymph nodes. I had the full axillary node clearance but it wasn’t found in any others. I am now grabbing you by your ankles and pulling you as hard as I can out of that rabbit hole. Think of those lymph nodes as clever sponges doing their job of soaking up any stray cells. I had the full works of treatment and was told that our stats are excellent. If you do a search on ‘axillary’ on this forum, you will find lots of people who have had this done, including me, and lots of helpful information. I found the heart shaped pillow really essential to put under my armpit afterwards. I had mine done in December 2023. I’m living life to the full now. It does knock you for six when you are told it’s in the lymph nodes but I realise now that it’s not uncommon. Sending an extra hug.
xx
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Hi all, just thought I’d post on here in case anyone is close enough and maybe interested in attending/supporting. There is an Afternoon Tea for Breast Cancer Now (teas, coffes, cakes and sweet treats) available for a small donation, at Bristol Memorial Woodlands, Earthcott Rd, near Itchington BS35 3TA, 11am-3pm. 3rd October, advertised in my local free paper. 
Hi @salbert You have made me smile for the first time today 
Bless you for kind words and hug. Its so reassuring to hear you are living life to the full. I have now extracted myself from the rabbit hole - thanks to your hard pull on my ankles 
I will search ‘axillary’ on this forum as you suggest. Thank you so much xx
@salbert Thank you. Its not great as the little beasties have done more damage that cannot be undone. It left me thinking I wish I could have chspbwho came round to my friendsbhouse and in no time at sll had killed of the wasps nest buttoned in her wall of these beasties (sorry i hate wasps) coukdnt hebposdible do donrthing like thst my brain!! 
I.like the imagery so Ill jerp that one!!
Anyway lovely ladies I cannot justify me wingeing on any more as this is definately not BC!! But as you’ve listened to my moans (earache anyone? 
) & been so empathetic for far too.long I felt an explanation was due!!
@alpacagirl Hey never fear I had those little beasties in my lymph nodes too and they certainly cleared them out. I cant comment on what they do these days as it was 13yrs ago (treatments changed/mproved even further).I’m 12yrs clear despite a stage 3b grade 3 and ridiculously large tumor.. so never fear. Do you want to borrow that fumigator chap to aniyalate them holes of doom? Give 'em a blast! Bad, bad luck for them they’ve been spotted!! Big hugs
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Good evening all,
Today marks the first day of breast cancer awareness month so it seemed fitting that I post.
I would like to @salbert for her humour, positivity and for starting this thread because it kept me out of a rabbit hole when I was diagnosed with triple positive breast cancer in November 2024. Fifty days after that news I learned the blasted disease was in the other breast too. The people in this thread were like guiding lights in what was a very dark time.. I am also grateful to @arty1 for her sensible advice along the way and to @naughty_boob for her phenomenal support to me and others with useful information, kindness and care.
This time 2 years ago I’d partially retired and was planning how I might spend my non working days. Life changed irrevocably after my routine mammogram. Like all of us on this thread a whole year of treatment ensued. Nearly all of 2025 and and 7 weeks of this year. At the beginning it seemed insurmountable and unimaginable. Now I have little recollection of last year.
Like many of us I returned to work too soon because we have too. Our long treatment path means that our absence is felt and our sickness leave runs out. It was hard going back because I was not as I was or who I was before. I realised within days just how impactful the treatment had been when I typed gobbledegook, lost the language of my job and felt embarrassed and upset when I couldn’t converse fluidly or fluently. . The fatigue limited everything. It was all dreadful. It took a good eight months before I felt any semblance of who I used to be and for my confidence to return.
‘It’ has changed me visibly as it does to all of us on this thread. We bear the scars. For me those from a double mastectomy and a small white one alongside a mole on my right upper arm, a reminder of my PICC line. I feel the weight and coldness of the ‘replacements’, and then there is my changing hairline. 
. After my hairs enthusiastic return, the soft curls thinned and got sparser at the temples. I saw myself in a restaurant mirror after a windy walk last month when I was on holiday. All I could see was my the Christmas tree hair loss caused by the Letrozole, so I found a hairdresser who shaved it off. No 3 buzz cut. I left the salon feeling 10 years younger and more confident. Now when I look at my reflection I see my face. I have no hair to worry about anymore. It’s been liberating.
I also came to the realisation that although 2025 was gruelling, living a slow, quiet and simple life was rather nice. The last few months at work have been hard due to multiple factors beyond my control or influence. I do not have the energy, the reserves or the will to work as I did pre cancer. I am shattered when I get home and my days off are spent recovering. The Letrozole, along with my stealing my hair steals my sleep. Trying to function on 3-4 hours unbroken sleep due to hot flushes, sweats, prickly heat and aching hips has played its part in making me feel quite miserable at times. It then dawned on me that I was happier when I was in the thick of it having chemo than I am now, so, after a 38 year career serving others, I found the courage to resign. I no longer have the knot in my stomach which presented itself each morning nor will I be the carrier of what has felt like a heavy weight. I am now counting the days before I can step away.
I am going to have allow myself some space and grace to recover from it all then think about how I want to spend the life I have now.
On my last day at work I will slope out quietly just as I did at the chemo suite. No celebrations or goodbyes. There is no bench outside the office so I’ll do as I always did and slap my arse instead!
Night night. X
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Thanks so much @waveylocks 12 years clear - that’s great! Love your sense of humour and positivity. I need more of your no nonsense attitude. Yep - need to get those beasties blasted asap!
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Feeling very upset, had histology results from SMx and ALNC on Monday for HER+ hormone negative as follows, Complete pathological response to chemo, of 15 removed lymph nodes all where clear, Surrounding DCIS to area of HER completely removed with clear margins. most think I should be happy yet Ì still feel miserable. I have another oncology chemo appointment to plan what comes next and I am hoping it’s just phesgo and I have a radiology booking appointment which arrived at 9.30pm last night and scared the heck out of me as my skin reacted very badly to chemo and still has not calmed down. I can still only wear organic grade pure cotton. reacted to any metal clip or zip on any post surgery bra that touched my skin, still having to have a seroma checked and drained every few days to avoid strain on scar as BCNs do not think my skin would cope with the dressing they would have to use if it’s springs a leak and oooooooooohhh. Its all just got a bit too much as I have to go back to the breast unit again to have bloody seroma checked again this morning after speaking with the BCN.
Damned seroma is stopping me from using even a knitted knocker as my scar and surrounding skin is both tender and very reactive to anything with edges let alone seams. The whole thing is all making me feel less like a woman tbh and leaves me wondering if it will ever improve. Anyone else with uber sensitive skin ( mine is eczema made horrendous from allergies) had radiology post chemo and surgery and any suggestions as to what helped keep your skin from breaking down. terrified if my skin starts down that route the risk of skin infections from eczema prone skin ramps right up.
Decided to cancel a year ago planned meeting Ì had booked for tomorrow and do something a little more fun and lower key before Mondays hospital appointments.
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Feel for you Mrs Jelly.. sending u hugs. Yes my treatment changed me too and the effects of Leterzole were pretty dramstic.. I suffer with permenant hair loss…so wear fully hand tied synthetic wigs. They feel comfy. Wow though the price has shot up! I dont look great with a shaven head so glad it suits u. Enjoy.. for me though the hair loss was chemotherapy that nuked my hair but it was strongly made up as my tumour was very large, multi focal aggressive beast..
I found I could only manage part time after treatment but I was older and thought it msybe partly that. I know someone younger who had phases of her letrozole being paused and then thry eventually moved her tp tamoxafan (spelling!) And she did better… For me after 7yrs of limping along on Letrozole I stopped it with my oncologist support and I felt better after about 6-9 months. I retired a year after that feeling like id stayed too long…I was massively relieved and have never looked back..
So slap that arse as you leave & I wish you joy as you carve out your new life. Xx
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Thanks @salbert It really does seem rather counter productive our bodies behaving so badly doesn’t it. My body has enjoyed attacking it self over the years forcing me to take steps to counter its daft moves. But the brain! Clesrly it has zero sense to attack central control. ive tried telling it off but its not paying attention so time for some serious zapping to knock it back into place..
Its been a rough week as my little sweet dog sadly passed. My faithful thats been by my side night and day through treatment ops etc etc wherever i went she followed, literally, until age caught up with her at 15yrs ..Been a lot of sobbing as shes sorely missed but shes in a happy place now dancing as a youngster once again…
Still…by rights I shouldn’t be here and I am!! Bring on the champus ladies time to dance and boogie and celebrate!! 
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@wibbles that sounds pretty rough - and it’s hard sometimes to feel the good news when other aspects still really suck 
I’ve got pretty sensitive skin too and the Paclitaxel I’ve just started has kicked off a rash and the steroids have given me spots 
And it took weeks before I could wear anything for any length of time on my scar which wasnt very practical in public 
- I’ve now found Sloggi zero feel the most comfortable option.
I’m still finding Aveeno daily moisturiser the best. I’ve tried the heavier one - dermexa but it’s too much on the areas with rash.
I hope things settle down for you - big hugs
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BCNs are pretty certain l made the mistake of overexcercising on physio and doing too much this week. Hence seroma going red, skin reacted to excercise over site of seroma. great. No infection signs. Been told to try and rest far more if l can and take paracetamol and ibuprofen and reminded l had my op a few weeks ago and everything is looking good scar wise. Also been told that it’s normal to feel very flat when you have done ten months of treatment and then have to face some more.
Sadly my skin still hates Aveeno and is only just tolerating aproderm. Advised to have a long chat with oncology about radiology and skin issues as there are options that radiology can offer for supersensitive reactive skin and they can access my oncology notes to see all the extra hell chemo set off with my skin. Advised against having a foob fitting till my skin is calmer and my scar more settled. I do NOT want to end up wearing just a sheet from radiotherapy as I did during chemotheraphy as I could not bear anything against my skin again.
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@mrsjelly so pleased you have posted on the thread. I’m so sorry to hear everything has been so hard, I think we can all sympathise with you that cancer has changed us. I find it hard when you see others who have had different treatments spring back to normal. In fact I’m quite jealous. I know we are all individuals with our own health conditions, family history and work situations, but I do think those of us on longer treatment plans struggle with no only the time it takes to finally finish treatment but the lasting effects it has on us physically and mentally. Slap your arse!
I’m pleased to hear, you have made the decision about work. I’m sure you feel a bit relieved now you have done it but until the day happens it probably won’t feel real. I took redundancy with early retirement in 2024 and found that I needed something to focus on so I tried to do different things each week. I’m happier now than I was working. I have a lunch with some ‘bosom buddies’ every month and an evening meeting with guest speakers. I do more volunteer work with BCN. Cook, garden and even managed to run 28 minutes in the couch to 5k. Unfortunately, Zolendronic acid infusion stopped that, then a gynae biopsy, which was clear and vomiting bug, that put me in hospital for 27 hours. This was in a chair, dehydrated, masked for the whole time, so as not to spread to others, couldn’t keep water down, and staff saying it’s not airborne. When it can spread if I was sick and by touching chairs, door handles, toilets, etc. I didn’t want to be patient zero that gave the hospital norovirus. I waited 7 hours for fluids, another hour for anti sickness and painkillers. Then when the fluids finished I still couldn’t go for a week, the nurse dismissed me, 2 hours later I mentioned to another nurse who scanned my bladder, which was full, then gave me mother bag of fluids. It took another 3 hours before I could go, I had been really dehydrated. I had a CT of my abdomen which was clear as the GP was worried about not hearing any sounds in my stomach. Another ultrasound of my gallbladder as they saw a shadow but that was also clear. Doctor wanted to discharge me and I hadn’t eaten for 2 days. Luckily one of the health care assistants made me some plain toast to make sure I could hold it down. Next time I’m staying at home. It was horrendous, I didn’t feel seen or cared for. One doctor at night was lovely and took the cancer diagnosis seriously and possibility of spread to stomach. I think the NHS is moving from corridor care to chair care. I took a bag of night clothes etc but sat in my clothes the whole time. Mixed area of 20+ people sharing two mixed toilets. I wouldn’t feel comfortable changing into nightclothes. My husband was sent out as there were too many patients and I felt so poorly I couldn’t call out for help. So many in there were chatting away as if there wasn’t anything wrong with them, getting food from the cafe even though there wasn’t anything wrong a sign saying nil by mouth until told otherwise. It felt like some were just there to jump the outpatient waiting queues. Some even went home and came back the next day.
Wow, just realised I feel better just putting this in writing. I am going to complain as things won’t get better if they aren’t told how bad it is.
I have been away from the thread for a few weeks and wanted to welcome all the newbies.
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just catching up on the last few posts. So many of you going through very hard things just now but still continuing to offer support in amongst it all. Women are pretty brilliant.
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