Similar diagnosis 10cm dcis and 12 mm stage 2 grade 2 triple positive idc , diagnosed october 2024 x
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Hello lovely people!
I have been reading for a little while now but wanted to introduce myself.
I was diagnosed in Oct aged 42 with 12mm triple positive IDC, had a pretty straightforward lumpectomy/slnb in Nov, clear margins and 0 lymph nodes reported in Dec, had my first of 12 weekly paclitaxel + 18 3-weekly herceptin last week, next dose tomorrow.
The only time I have cried for myself was in the chemo room last week (I had a portacath put in in the morning and by the time the fresh-from-the-fridge poison was flowing through the local anaesthetic had worn off so it was rather painful on my bruised tubes) but I have cried quite frequently for the 2 friends whose funerals I attended 2 and 6 days after my op who both had much more proper cancers than my what feels pretty trivial one (leukaemia and neuroendocrine cancer)
I think it still hasn’t really sunk in that although I have known for a long time that BC is very successfully treatable (I’m still surprised to see it’s quite as good as the “nearly 100%” on the Cancer Research UK table for 5-year survival for Stage 1 - but I’ll take it 
), successful treatment is not quite the same as easy treatment. But I do know that with my current programme of surgery, chemo, herceptin, radio, medically induced menopause and tamoxifen for 10 years I’m going to be in this for the long haul…
Asking for help has never been top on my list of strengths but maybe that will be something I can learn from all this, so here I am and any wisdom and guidance would be much appreciated 
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Did you have another ultrasound after cycle 4? If so, did you have more shrinkage? My first ultrasound showed a good response too but then 2nd one was much smaller.
Hi guys - feeling a tad deflated.
Just got the results of my post chemo MRI and while I’ve had a good response (the total extent has shrunk by 61% overall and the involved lymph nodes have resolved according to imaging), the MRI is still showing residual disease. For context, I have small multifocal tumours in the left breast, which were originally HER2+++, hormone negative.
I’m pleased about the lymph nodes but am feeling a bit down right now. Surgery is scheduled for two weeks time. Looks like it’s Kadcyla for me 
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Hi @annie7 so they could not measure but said the “tissue” was shrinking so I was definitely responding to chemo. They just could not measure it 
@knock-knock Welcome to the thread.
It’s sometimes hard to ask for help especially when you are the one that normally offers it. That was me. But having a BC diagnosis has made me realise I do need help and it’s better to say exactly what you want and need. You are having the same treatment plan that I had. I was bilateral invasive. Have you joined the January chemo starters group, it’s great to get support and guidance from others going through a similar journey to you.
We are a friendly bunch and will be her for you.
@jessybessy Sorry to here your response to chemotherapy has not been as successful as hoped. There are several other ladies on Kadcyla on this thread. The positive is that there is treatment for it.
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@jessybessy Yes I’m in exactly the same position as you, I do think these type of tumours often have residual cancer after chemo and need kadclya treatment but they don’t mention that before you’re in that position! I need a further op next week as they didn’t get clear margins, then radio, then kadclya and phesgo. At least we have these drug options! X
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Yes it’s true and I hear Kadcyla is really good at doing the final mop up job. What was your pathology report like, if you don’t mind me asking? X
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@jessybessy I don’t have a copy of it, I was just told the outcome, it wasn’t discussed in detail. Maybe I should push for that next time I see my surgeon.
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Yeah they should give you a copy of your pathology report. Do you mind if I DM you? X 
@naughty_boob thankyou! I’m currently just lurking on Jan starters but I imagine I’ll chip in at some point
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Afternoon all
Welcome, welcome @knock-knock and I’m really glad you’ve come to say hi. I think we all hit that wall at some point and the tears flow but I also think it is important to let them flow and to acknowledge and respect how you’re feeling. Losing 2 friends so close together would be a blow to anybody at the best of times. By coming on here and saying how you feel, you are doing just that. We can all remind ourselves and each other that our odds are great and the advances in breast cancer treatment in recent years have turned things around for us but although we know these are huge positives, it isn’t always possible to feel that way, no matter how many people exhort you to “Stay positive”. (Seriously, one person who I never see socially for years at a time took it upon herself to call upon me unnanounced on a Saturday night when I was at my lowest, sit and drink beer when I couldn’t and keep parroting that at me, ensuring I felt the very opposite. Well-meaning but ill-judged….). We all have down times and not surprising, we are going through something major and for us HER2+ pack it’s a long-winded affair. Keep talking to us, keep processing and remember that chocolate cake-filled duvet days are ok and sometimes exactly what we all need.
@hlc Let us know what your oncologist says and absolutely be like Arnie!!
@jessybessy - I’m sorry…that’s disappointing and not the result you wanted but don’t despair, still lots they can do. There are Kadcyla girls on here who can give you advice and who you can compare notes with. Hang in there. 61% is good shrinkage so now you need to whack it with surgery and whatever other treatment your team decide to give you and finish it off once and for all. A big hug to you and really great that you’ve already hooked up with @jane13. Like she says, we’re in this together and it’s great to have our buddies.
I had my first haircut in over a year last night. It felt great. My dark, short curly head was looking a bit like Sideshow Bob and now it is nice and even. I have organised a reunion of all my college friends this June as this bc experience has prompted me to do so and I am hoping it looks less helmet-like by then! Not that it actually matters. Hair is all well and good but I can get ready in the morning in a fraction of the time I used to these days.
Big love buddies,
Salbert
xx
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Hi all, well I am nearly 6 weeks past my single mastectomy with diep and on to the start of 12 weeks of Paciltaxel along with 3 weekly hercepcin on Friday. Feeling very scared and anxious which I hope will pass once it starts. Just wanted to ask if anyone worked through this plan ? I work from home at the moment and can carry on for the 12 weeks. Just need something to occupy my mind.
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I had bi lateral lumpectomy followed by 12 weekly Paclitaxel and Herceptin and I didn’t work. But I worked in education and it’s the worst place to be when you are immune suppressed. Every is different and reacts differently to the drugs, for me I was ok at the beginning for 3/4 days, one of them I was having treatment again and with the travelling, I couldn’t plan anything. At 8 weeks I had a temperature that needed iv antibiotics so I was in hospital for 6 days, I was already on a reduced dose and they reduce again so I could finish the full 12. That’s just me, you could be totally different. As time went on I felt more fatigued and achy for a couple more days and so had maybe 2 good days. I was on 2 chemo starters groups and some of the wonderful people worked through chemo and had flexible or reduced working hours. Others like me couldn’t work. You won’t know until you start treatment.
I would highly recommend joining a chemo starters group. This is the link for January 2025, as you are starting on Friday
Chemotherapy is not easy or nice but it is doable. It not only gets rid of those pesky cancer cells but also our good cells which is why you may feel rubbish. Just be kind to yourself.
I coldcapped for the 12 weeks which great success. www.cancerhaircare.co.uk are a great charity that support hair issues through cancer treatment.
https://www.littlelifts.org.uk/get-a-box/ Can send you a free chemotherapy treat box, you have to supply a diagnosis letter for verification but they delete it as soon as they dispatch the box.
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Yes I worked full time from home apart from on the day I had chemo after having it. I wanted to keep busy too but felt well enough to until I got Sepsis. I have had chemo befire so knew I would be able to work again although managed to work more this time as I was on Paclitaxel. Last time I had FEC-T.
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Well i asked oncologist today and the answer was no scans afterwards. Im absolutely floored. I wll have a ct before radiotherapy but it wont be looking for anything suspicious. So the herceptin till November and letrozole for 10 years with 5 yrs mammograms along with 5 sessions of radiotherapy. Im being booked in for a heart scan like i had b4 chemo to see if any damage and will have those at 4 monthly intervals . Was hoping to get a date from them today for radiotherapy but no. She did say however shed chase it up cos someone should have contacted me by now. I feel like ive been side lined. + ive not heard a word from my breast care nurse she called me 3 weeks before i started chemo and said ill call you again once you settle into treatments. 
Ive worked alway through my 12 weeks paclitaxel and herceptin. Except Christmas of course. Found it quite manageable. I had every friday and had rubbish weekends due to no sleep with steroids on friday nights and feeling groggy. No sickness. Watch out for the taxol rash… i had my last treatment friday and my face is horrible with it. Oncologist today has prescribed me tablets and ointment in hope it will improve my appearance and advised no makeup for a while. In regards to hair loss ive been lucky. It thinned hell of a lot but to anyone that doesnt know me theyd never know ive had chemo. Best of luck. Please message me if you need anything 
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@hlc you had the same treatment plan as me. I wasn’t given any body scans to check for spread. The CT scan was for radiotherapy planning only. They told me that extra scan can cause anxiety and sometimes pick up things that are nothing but can involved more tests and procedures which can overly impact our lives. I have my annual mammogram and bloods before Zoledronic acid. I did push the GP to check bloods including cholesterol due to being on Letrozole, it was in my paperwork for Letrozole but the GP had never heard of it.
The breast care nurses should check on you, can you call them. Mine have an answerphone system. Where I am I have clinical nurse specialists from the oncology team who also check on me and I finished Herceptin mid September 2024. They call every 3 months.
I hope you hear something regarding your radiotherapy, I had my CT planning while I was still on chemotherapy.
Hi all, HER-2 positive (diagnosed last week) and start chemo next Wednesday 29th January, completely terrified.
Looking for any help preparing for chemo side effects, on Phesgo sc and Docetaxel and Carboplatin iv x 6 courses.
PICC line insertion and echocardiogram next Tuesday.
Any advice on stuff to buy and any help or hugs gratefully received 
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