@marionse25 Im so sorry - that is disappointing and unacceptable. As if you haven’t been through enough already , I would be very upset too to be told I needed revision surgery 
The kadcyla seems to be knocking you for six … have they said anything about you reverting back to phesgo ?
Who was your surgeon as I had my surgery there last time and he did a fab job but is on sabatical so if I get a second opinion I would go back to the guy covering his private patients probably?
Can you DM please me as I don’t think they will allow this on the forum otherwise.
he is a private surgeon performing in Chelsea. He is Greek.
He was annoyed I did not want reconstruction and said I would regret it… this time he tried to refer me for a prosthesis when I had already said no thank you… That won’t solve the problem!
Hi @arty1
For phesgo we will wait and see what my blood tests look like and may resuce the dose or revert to Phesgo.
I have been given nothing for pain and I now have neuropathy in hands and feet.
Hey everyone,
@salbert so basically my mammogram was no good (as she said it would be) because of my dense breast tissue so I’m off for an MRI this evening. She told me that 50% of people end up having another biopsy so I’m a bit gutted but I guess this is just standard procedure and they need to be thorough before the op. Just hoping they don’t find anything else. When I had my ultrasound she looked round the entire breast and armpit and said it looked ok so fingers crossed. I’ve not been coping too well at all, considering going to the doctors to see if they can help with the lack of sleep and eating coz it’s really not helping anything. I’m constantly exhausted and emotional. How did you guys get through this? It feels impossible.
@arty1 you’re so right about the doom and gloom. I just wish my brain would let me keep thinking that way. Everytime a positive thought comes into my head, 20 negatives ones take over 
I’ve been at Paultons Park today with my kids to try and just forget about all this for a while which has definitely helped but the reality is slowly setting back in with the MRI shortly.
Thank you again for all being so kind!
Thank you @naughty_boob
My husband is my only family in the UK and he is doing a lot already.
I am going to do a data access request to have the details of my surgery. The point of having a private surgeon is that you don’t get students practicing on your body… I am really scared of surgery and complications I really don’t want a new op.
There was definitely something wrong with my surgery. Despite fentanyl and oxycodon I had agonising pain for several weeks. It is unheard of for mastectomies and I have a high pain treshold!
Hope the MRI goes ok. I had an MRI for sizing of my tumour to decide if it was chemo first or surgery, unfortunately for me they found an anomaly in the other boob, had another ultrasound and biopsy in that boob to be told I had another primary tumour. Before you panic, this is quite rare only 5% of all breast cancer is bi lateral.
As far as sleep, we all know what it is like. I was prescribed Zopiclone, I was told I could take 2/3 nights a week so I could at least have a couple of good nights. I still have them as my sleep is disturbed by hot flushes and needing the toilet.
Thinking of you 
@scaredmum1 don’t panic at about the MRI , they are just double checking things , same re the second biopsy . I needed a second biopsy and had to have a repeat mammogram and ultrasound , I was told it was important they had the full picture in order to formulate a treatment plan x
Double post
@salbert we love Halloween and went to town on decorations! As a result we had so many visits we ran out of sweets and had to resort to offering the crisps we had in 
Felt a bit meh today when I turned over the calendar and saw chemo day marked on the 22nd 
It’s a week since I told them I’m allergic to castor oil yet I’ve heard nothing and no appointment for my echo either
My appointment with Professor Nienbar was encouraging , he’s not at all concerned about my heart function which is good and said he thinks my tachycardia may well be anxiety and hormone related . Re my aneurysm, he said my aorta has increased by 2 mm in three years but said there is a 10 per cent error margin in echo measurements . He wants my HCP to organise an ECG gated ct aortagram before treatment g just to get a baseline but I think that’s unlikely to happen 
@rrey I’m so sorry, I forgot to reply to this the other day!!
You sound like you’re absolutely smashing it! You make so much sense in everything you say. I just hope that one day in the future I can get to that place too, it gives me hope 
thank you.
Kids are definitely very resilient and I’m so glad that they are. I’ve been so proud of my daughter this past few weeks and she’s handled everything! But the mum guilt is very real isn’t it! I haven’t wanted to do anything this half term but pulled myself together enough to take them to Paultons Park today (which was very tough) but they deserved some fun!
I hope you’re doing ok in your treatment xx
Hey everyone! Hope everyone is doing well.
The feeling of only having one round of chemo left is just amazing! Starting to pick up again now so will have a lovely 2 week back at home in my routine with the little one. Plan to do some christmas crafts with her, we are very excited!
I am booked in for a booby mri tomorrow its to prep for surgery now, and i have a heart scan next week too.
I just wanted to ask everyone, when they had there scan before surgery… what if you had total response? Do you still complete the 6 cycles of chemo? And as anyone changed there lifestyle habits once they got there surgery out of way? I been reading about the HER2 and it seems beef etc can all contribute, saturated fats and alcohol. I plan to try and maintain a healthy lifestyle after this… obv now and again i will indulge in things… not sure if i ever want the alcohol again though!
@scaredmum1 i just wanted to reach out, im only 33 with a little one, i know its a scary time but take each day as it comes and honestly things do get better. I was where you are in june and i know how awful it is when your mind takes you to dark places specially when little ones are involved. Once you get cracking with treatment the determination takes over and honestly these months for me as gone so quick! In meantime do.the things you enjoy, even if its watching your fave movie etc. If you ever want to chat or rant feel free to reach out. This group is honestly amazing and i am so grateful to each and everyone of them! 
🩷 jemma & shitty titty
Just to add too i did my first fundraiser for breast Cancer on Halloween, i felt i needed to give something back… will be the first of many to come! And we raised over £500 i am so chuffed! And thanks to my aunty for this amazing cake she made.
@jeml that’s amazing! I can imagine the feeling of being so close after months of treatment is a good feeling!! Sounds like you’ve done so well, and with a toddler!? They’re so demanding at that age so I can imagine how hard it must of been.
I’m trying to take each day and appointment at a time but can’t help but think about Chemo and it literally scares the life out of me. How I’m going to feel and look. Makes me so sad, I have to stop myself. Although, I’ll be grateful to start healing, I’m petrified at the same time.
Its not been easy but i have my mum watching her on my chemo week which as been a massive help. I made sure she was involved i told her about mummy naughty boob and that this strong medicine i have to have will make it better but mummy will lose some hair. I cut my hair in front her etc and was sweeping it up.
I was scared too, its just something you never ever imagined having to go through but its not scary at all once you sit there in them comfy chairs and everyone so nice to you. I took my tablet with me and watched something to pass the time on… i cried when i went for my 1st chemo but i was fine once i got settled and everyone was lovely and very caring. I got a lovely wig and its given me my confidence back. I wear my head scarfs in house… my hair is growing back already too 
so thats something.
It feels good to be near the end… still feel a bit rough post chemo last week but its doable just in bed with my.hot water bottle.
When do you start treatment? X
And remember our hair is a small price to pay… and it will grow back
Hello, lovely friends
@marionse25 I am so, so sorry that the wretchedness continues for you. For you of all people, I wish I could wave a magic wand and change everything. It’s just been one thing after another and I wish you could give up work, not have that hideous round trip to hospital and as for revision surgery, that is like a massive kick in the teeth after everything you’ve been through. I wish I could give you a big hug, not that it would do any good but I just feel so sad for you that this has happened in addition to everything else. You know that I highly recommend Katherine Krupa. She is not only highly skilled but is very nurturing and kind. It was one of the main reasons I chose her. If you go for a second opinion then she is wonderful. I keep saying hang in there to you, but it’s all I can say. Know that you have many friends here who care and wish it would all get better for you.
I hope you get to enjoy your weekend somehow.
@naughty_boob Once again, sterling advice re Power of Attorney. Of course we’ve done this for my parents but I’d never thought to do this for my husband and I. Makes total sense. If Martin Lewis recommends it then it’s a must. I adore the man!
@scaredmum1 - First of all, I’m going to say a huge well done for making it to Paultons Park when you are feeling like you do at the moment. That must have taken so much strength so all credit to you for being a supermum right there. Secondly, a big YES…go to see your GP. They are usually very sympathetic to what we are going through. A few of us got given sleeping pills to help during this period. I also had Zopiclone. The last thing you need is sleep deprivation on top of everything else and it’s so damn hard to eat when you are so stressed. Lots of us have gone to the GP for help at exactly the stage you are at now. Definitely go.
How did I get through the bit you are at? This forum helped me massively and still does. Stay with us and keep talking. You just keep putting one foot in front of the other and you will get there, I promise.
@arty1 I knew you wouldn’t disappoint me with Halloween!! 
You are so talented and creative. That’s all sounding positive with the Prof. I know chemo is daunting but you’ll face it, you’ll do it and the girls will be here, cheering you on when you’re smashing it and holding your hand if you need it.
Hi @jeml Well done and it must be so good to know you are one chemo away from finishing. If they don’t have a bell at your hospital then make sure you go and slap a bench! I had full chemo even though there was a chance that all the cancer was already gone. Long story but I had a previous consultant who went in four times unsuccessfully until I switched to Katherine Krupa and did chemo followed by a mastectomy. She said that they do the full works of treatment to make sure you get the best they can give you. I have changed my lifestyle quite considerably. I was overworking myself so am not going to work so hard as I feel stress didn’t help me. I was one of those women who couldn’t wait for it to be 9:30pm so that I could pour myself a large wine and soda and I’m ashamed to say that I enjoyed it with two sneaky cigarettes on the balcony every night. I knew it was bad and I wanted to kick it but I loved it. I had my last wine and cigarettes on 8th November 2023 but I didn’t realise it at the time. D Day was 9th November and I stopped abruptly. I was already vegetarian but now I am vegan and I eat a lot of anti-inflammatory foods, pulses, beans etc. Last night I made the Mediterranean Vegetable Stew from theanticancerkitchen.com. Before you all stop talking to me, I still love chips and chocolate but I try to counter them with dog-walking every day and eating healthily. I actually don’t miss the alcohol. I thought I would but on the odd occasion when I have a glass of wine, I find that it makes me sleepy and a bit befuddled and I prefer to be clear-headed.
I agree with you about hair loss too. I was so scared of going bald and becoming bloated from steroids. As it was, I didn’t get steroid bloat as I couldn’t take the things (madwoman alert!) and I found that losing my hair just didn’t matter at all. It’s been really liberating and I loved my wigs, headscarfs and hats. I actually feel my style has improved and I’ve embraced a new me. I love not having to dye, style, blow-dry, straighten blah-blah-blah… I have short, wavy dark hair and I love it!
Finally, well done on your fundraiser. You put me to shame. I must do something but always thought I would wait until treatment was over and there you are doing one before you’ve even finished chemo! How did you do it? Cake looks too good. 
Ah yes, that’s something else I haven’t given up. Far from it. I eat more of the stuff than ever. Now I think about it, THAT’S what’s taken over from alcohol.
Have a good weekend everyone.
Salbert
xx
Hi all,
@marionse25 i am so sorry your problems continue, it seems neverending. That Kadcyla treatment seems too harsh for you. I hope things pick up soon. How awful your surgery has left you with unsatisfactory results and left you with difficult choices to make. You hsve had bad luck sll round. Perhaps it would be worth seeing @salbert’s consultant she sounds great.
@jeml. - well done for getting so far through your treatment. I had complete response to chemo, which i was really surprised about given the initial size of tumour, but i carried on for the rest of my treatment. Then when i had surgery no tumour was found and lymph nodes clear. Ive just finished 5 sessions of radiotherapy so all done, apart from Phesgo til end May. I’m just glad i dont have to drive down that wretched motorway everyday. I,'mtrying to stick to a healthy diet, although I did eat quite well before diagnosis.I’m trying to cut down on ultra proceesed foods, now i am getting back to cooking proper meals. However like @salbert i think cake has replaced alcohol and i even had a shop bought mince pie this morning. My insides haven’t completely recovered and still get the occasional bout of diarrhoea, maybe too much fibre! I’m just about to make a GF courgette and lime cake for my granddaughters birthday tomorrow. I have had the occasionalglass of wine but i shall not go back to my previous habit of 2 or 3 glasses, +/- a gin and tonic Friday -to Sunday. I have been trying out non-alcoholic alternatives, such as Lyre’s Orange spritz and have even found a passable red wine from Ocado. Nozecco for birthday party tomorrow.
I haven’t missed it so far, but not sure how christmas will go, but i’m not going to stress about it too much . So basically i’m not going to cut out alcohol altogether just not make it a regular thing.
I’m going on the Moving Forward course next week, which is a bit sooner than i would have liked, but there didnt seem to be another one in that town for many months and i didnt want to go to the other ones that are not too far away. So i will let you all know how it goes.
Best wishes
@jeml That cake is fantastic !!! Well done on raising such a huge amount too 
@scaredmum1 I was chatting in the nov chemo starters group as our first starter had her chemo yesterday and I’m trying to visualise the chemo like old style space invaders ! The chemo zapping the enemy ships … it’s frightening … believe me I’m not looking forward to it but I’m trying to see it as short term pain for long term gain x
@naughty_boob Im going to rename you the oracle , you are always on hand with info and supportive advice , I think you were one of the first to reply to me too when I first posted in the forum saying I was looking at a breast cancer diagnosis . You’re advice is always invaluable x
@salbert I swear your positive upbeat posts are sunshine on a rainy day - you keep us all going and motivated
Slap a bench… never heard that one before 
they dont have a bell its a little quiet clinic i go to.
I remember you saying about the other surgeries you had, i thought it was just shocking to be honest! I mean you got there in end but 5?! Just find it ridiculous!
Well i plan to kickstart a healthy lifestyle, i mean i was never proper bad but i do like my food going out for meals etc. Be careful with the sweet stuff though sugar feeds the C apparently so im being cautious with that too ( got to have a little bit now and again though ) the fundraising went super well and its given me a massive boost and even more appreciation towards everything.
Its going to be so so weird after my last chemo i mean i am relieved it will be over but i just hope its enough chemo too… you know. I dont even know how to explain it!
