Hey @caz591 well done you, take it carefully but so glad it’s feeling good to be back at your work.
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So happy to hear this. How are you finding Kadycla?
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Hi all, not an update I wanted but my second lumpectomy was a fail even more DCIS and some sneaky IDC of 4mm, the surgeon thinks it’s my original one shown on biopsy even if before he thought it was sucked up fully. So here I am getting a single mastectomy with recon in a couple of weeks and having one more wait till pathology. They think no more invasive will be found and the oncologist does not want to recommend chemo until he sees the pathology but I feel it. I know it’s becoming inevitable final slap in my face. I am so disappointed and so not ready for another surgery and the body image issues and all that shit that comes with it. I know so many of you get what I feel now.eh…
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@boobitis I’m so sorry that’s not at all what you wanted to hear. I’m sure you will get plenty of hugs and practical advice on here, it’s having to go with what’s safe and gets rid of the b***r. Will be thinking of you.
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@naughty_boob thankyou for your kind words. I still have the lump. Its about 3cms. Was a shock when I found it. GP paled on examination as it was hard & fixed. So its nothing…how will me and my hp know now? Onc surgeon told me I remain very high risk. What said I after 10yrs clear… Yes was all she said. Ill write a letter…still waoting well overc2 months… Ticking time bomb. Lovely. So it ocurred me that Id change my 14yrs old car for a one year old and took a hol to Cyprus. I feel I need to live my life in the fast lane now before my luck runs out! Except my energy levels remain low, dastardly fatigue…plus some other consequrnces one of them being no hair. Still in wigs…as my hair never came back Chemo cause PCIA.
The comfortable wigs for anyone who doesnt kmow are fully hand tied. Add a lace front & there you go. I buy synthectic. My hospital isnt generous…they contribute just £20 per year! And they capped the cost of the wig (why? Who knows…) so I dont claim the £20 because hand toed wigs cost more than what thry allow.
Anyway am having a gripe…when Im lucky to be here…but I hope you all take comfort from knowing there are those of us out there still in remission after a decade free. Hugs xx 
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@cass2 i am fine with kadcyla a bit of heartburn and some bone pain, dont need any pain killers, just getting on with it. @boobitis sorry to hear you need a mastectomy. Hope everyone is ok x
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Just wanted to say I’m sorry to hear it didn’t go the way you hoped. I know you’ve tried to maintain so positive throughout your journey and I really admire that - you’ve got this. X
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I don’t blame you living in the now even after 10 years. You have to do what is right for you, I’m only just beginning to realise this. Our wonderful @salbert is in New York after 2 years of treatment. Making the most of life.
I’m sorry your trust only allow £20 per wig. I’m just wondering if you have contacted MacMillan as I believe they offer grants to help with the cost of cancer. https://www.macmillan.org.uk/healthcare-professionals/for-your-patients/grants-for-your-patients From my search some areas no longer offer grants but MacMillan can help you find other ways to help.
https://prelovedreloved.org.uk/ is a charity set up by another breast cancer survivor. They offer preloved and some unused wigs and accessories.
Take care
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@naughty_boob Thankyou for your lovely response. Ive always been careful how I spend my money but suddenly I couldnt see the point. Ive calmed down now and my oh so sensible hat has landed back firmly on my head! 
I think all you ladies are amazing. Do keep fighting. You just never know what may turn round when you werent expecting it. Those golden nuggets…even if they dont last…are so so so precious.
Im grateful for the Herception and I think am grateful for the 7yrs of Examastane despite its vile SE’s!..it was scary stopping at 7 instead of 10 but for me QoL has a big big say too.
A very kind dear friend said to me…cant u just grow what hair you have…I explsined it doesnt work.like that…its not normal hair. It barely grows and its very fine, thin & frizzy so doesnt cover my scalp. Not a good look. She looked shocked. Shes the first friend to actually asked me in a decade…seems to me its a taboo subject… Even my doctors never enquire.
I wish all you ladies the very best…if its ok I may pop in occassionally but dont want to intrude. Hugs xx:heart:
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@waveylocks All a matter of balance I think when it comes to living life to the full! For me it’s sometimes been about relaxing my rules about what I spend, but more often it’s to do with other self imposed ‘rules’ - like not trying something because I shouldn’t do it at my age, or because I might not be any good at it. Sad that you’ve been really unlucky with your hair, so nice wigs are a must! Take care.
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Quick question: I saw a consultant after my Contrast Enhanced Mammogram scan. This was after my 5th treatment. The report from the radiographer wasn’t ready but he looked at the results and said he couldn’t see the tumor anymore. Fast forward 2 weeks later and another consultant was reading through my report from the last MDT meeting and she said they’ve recorded my response to chemo as partial. Has anyone else had this, but still achieved Complete Pathological Response at time of surgery? I don’t understand how a consultant can look at the scans and say the only thing he can see if the marker. I’ve also had the paperwork which states ’ when I look at the image I cannot see any obvious lesions’. I feel defeated.
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@cass2 Thats sounds very messy and hard to know what to think. I’m sorry I don’t have that particular experience to give you an answer. Keep asking questions. You could always talk through with one of the bcn nurses, my experience is that they often help me clarify what I should ask.
Thinking of everyone with their ups and downs…
My friend sent me the second Charley Makesay book of the Boy, the mole, the fox and the horse as a birthday present. Love this quote - ’ Do we know where we are going!’ asked the boy. ‘Not really’ said the mole. ‘Are we lost then?’
’ No’ said the fox, ‘because we have each other’
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Heya, has anyone else who is HER2 Positive had tiny liver ?cysts found on the CT scan at diagnosis? The phrase used was ‘too small to characterise on CT’. They also found a larger cyst on my pancreas.
I was told they don’t think they are significant, but I will be having a repeat CT scan in December.
I’m terrified because I understand HER2 Positive breast cancer can metastasise in the liver. I have at least one positive lymph node. Currently having chemo, and will be having a mastetctomy and full node clearance early next year.
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Hi @cass2
I had follow up mammogram the day of my 5th of chemo/phesgo. The radiologist would not say if I’d responded to treatment, stating that only the pathologists report would inform us. The surgeon when I saw him later that week was optimistic but agreed with the radiologists view. The oncologist, a week later would only confirm ‘it’ had not increased in size. I took this as a positive!
I had IDC and DCIS in one breast and DCIS in the other. I had a double mastectomy with immediate reconstruction. I had a pathological complete response in both breasts.
I tried to maintain my optimism and like you had hoped that the mammogram would provide me with some reassurance that the treatment was doing its job. I’d have been gutted if they said it was gone on the imaging then my results had said otherwise. Ultimately, until they look at the breast tissue under the microscope they don’t know how effective it has been and if it’s all gone.
X
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Hi @dilly
I remember the surgeon telling me when he said that I needed the CT staging scan that it can be like opening Pandora’s box.
My scan showed a cyst in my liver. They were not concerned so no further scanning suggested.
It is good that they are following you up by repeating the scan. Hopefully yours will be like mine, just an incidental finding because you’ve been scanned. X
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Thanks @mrsjelly, I have an oncology appointment on Monday, so J can ask more then. When I was originally told there was so much to take in I wasn’t able to focus properly on that information.
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Thank you. .y oncologist ended up phoning me and said I’d had a good response. They just couldn’t put a full response as there are calcifications, and like you said, no scan can tell if these are being or not. Only surgery will be able to do so. I think I was just panicked it hadn’t shrunk much.
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That’s really encouraging @cass2. I hope the phone call provided you with some reassurance.
The thing with our diagnosis is that the treatment path is so protracted and with that goes the physical and emotional highs and lows. You have hit another low but the end of the chemo is in sight. The surgery is easy in comparison. I was elated and a bit bonkers the day after mine and then since then I’ve been on an upward trajectory, good job my stamina has improved to get me up there!
2026 will be a better year for us. We can plan trips away like @salbert and challenge ourselves like @carrie5 
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Hi everyone - I’ve been away at the house we are renovating and then came feet first straight back into work so today I’m having a duvet day …
@waveylocks - the one thing that a cancer diagnosis has taught me is that tomorrow is never promised … we definitely have to grab life by the horns and live it … as my mum says “it’s not a rehersal, we don’t get to come back and do it again “
Good on you for enjoying yourself and treating yourself! The Voucher for wigs sounds rubbish , suggest the link that @naughty_boob posted ?
Saying that my hospital gave me a big fat nothing for wigs
@boobitis - I can understand you just feel so disappointed and upset as after all the surgery you are having a mastectomy …
I was offered lumpectomy after my diagnosis if multifocal high grade DCIS and 1mm of IDC … I was scared of the prospect of further surgeries and opted for mastectomy but was also wanting to avoid radiotherapy as I have heart issues …
that said I made the right decision as like you they discovered lots of sneaky IDC … and my DCI’s was even in my nipple …
Please chat to your breast nurse as this is a new thing to take on board and when you were hoping to avoid that kind of surgery . They should also be chatting to you about your options for reconstruction if that’s what you would like .
Don’t let yourself be rushed into making any decisions xx
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@dilly - the human body is complex and weird ! You know how we quite often have a weird but harmless mole pop up … a blemish or a skin tag? Well our internal organs are no different … odd things can appear that mean …. Nothing …
science is amazing . We can see the human body in ways we never could but it also means that we can see things that are most likely harmless x sometimes these nodules can be seen on a scan and further investigation shows it to be nothing x
Sending you a reassuring virtual hug
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