I am just back from the Marsden and got most of my results from surgery which was 9 days ago. My onco started with good news, I don’t need to have radiotherapy, then announced that some cancer was found and that is when I bursted into tears. It immediately meant Kadcyla and 9 months of canulas. My onco stopped me and said he wanted to discuss another option as he knows my veins and canulas are a struggle. So although the standard protocole is Kadcyla, there is no study to establish the efficacy of kadcyla vs phesgo. He went through the Kathryn and the Affinity studies which I was already familiar with. I can stay on Phesgo and could get additional treatment (tablets ) to reduce the risk of recurrence. He believes the difference vs kadcyla would be small. I would also get Letrozole starting in October although he needs to check that my chemo induced menopause is permanent. I was not before chemo and women in my family have a history of menopause in late 60s which is unusual.
I was feeling a bit better when I left but now wondering whether I should opt for kadcyla despite my vein issues as I can’t have a port due to heart problems. Also a bit confused about no radio, when my previous onco was adamant I would need 15 sessions. I think some of you have radio even if you had no lymph node involvement?
Saying that, happy not to have radio on my freshly new pancakes. I imagined them all burnt tbh! It also means I can start planning for a scar coverup tattoo, which would not be possible with radiotherapy apparently.
Otherwise I am still in pain after 9 days and I have developed cording overnight which is quite painful. I won’t be given anything for pain unfortunately. Last night was really bad and I am absolutely drained
Sorry for the late reply on this post my brain is all over the place!
Cats are amazing, I can’t believe how my new companion can be so well behaved after 5 years of sleeping rough. Took him to the vet last night who had not seen a cat that muscle-ly for ages. A lean mini panther.
Shame I was not in Sutton today. Hopefully we will manage ro meet at some stage!
Hi @arty1 thank you for the wishes. I am introvert too alrhough I am very assertive and I thought I would show my face too!
@salbert wow you look amazing and the hair, my 80s hair do was a perm gone wrong crossed with a mullet , mind you I’d take any hair at all at the moment, my baldy head feels like a fuzzy felt
@jeml I love this site too. I see it like a big safety net made up of arms that are there to catch and support each other when we need it. I was told early on that HER2+ moves fast but falls fast and with chemo and Herceptin, we can whack its arse into oblivion. She didn’t exactly use those words but you get the gist! Waiting for results is horrid. Denial and distraction are my way of dealing with it.
@marionse25 So good to see your lovely face! I’m happy for you that you don’t need radiotherapy but sorry that they found some residual cancer. I was told this is common but obviously it’s so disappointing. I know a couple of women on here that it happened to. It sounds like you have a lot to think about. (Menopause in late 60’s. Goodness me! ) Dr Ring is so good and so knowledgeable. I really do have total faith in him so I’m absolutely sure he wouldn’t say you don’t need radiotherapy if it wasn’t the case. I am having it starting next month as I had lymph node involvement. My cording has improved massively by doing the arm exercises that the physio at Marsden gave me. Be kind to yourself as you’ve really been through it and you’ve only just had surgery. You need time to recover and have a good think about it all. One day we will be at Marsden at the same place at the same time! Also, are you sure that you have adopted a cat? Just make sure it isn’t a cougar or something. Lastly, although I am extroverted, I have always been rubbish at being assertive. People tend to think extroverts are super confident but it really is more that you need constant social interaction with people. I have literally had to learn how to be assertive. I’m still surprised when it works but it does. I think they should teach it in schools. Actually, I went back to teaching Drama today and I noticed how much quieter and shyer my kids seemed compared to when I left back in early December. I’m putting it down to them being older and needing time to get back into the subject after the summer break, also me having been away for 9 months. I think we might have to look at assertiveness in the coming weeks. What a great thing to do. They are between 10 and 13 on a Saturday morning so I think it would really benefit them. Must get my thinking cap on.
@specialk2 Oh PLEASE dig out a picture of your 80s permed mullet. That made me laugh out loud. I actually did have a mullet after that hairdo as one of my ‘best friends’ convinced me that I would look better with one and that she should cut off my big blonde flicks. Needless to say, it was absolutely dreadful and everyone told me so. I have just got past the fuzzy felt stage now and my hair is growing back super fast. In fact I will post a pic now of me this morning, very excited to be returning to the drama studio. This is exactly 2 months post chemo hair. I’m intrigued to see how it returns. It seems dark and liberally peppered with grey at the moment. I have this idea that I will wear my grey with pride but have not written off a swift return to the hair dye aisle at Superdrug!
And now I am either going to Sage, the amazing vegan restaurant in Crawley for a late lunch or I am going to The Retreat animal sanctuary with a wounded seagull that my animal fanatic best friend has rescued this week. Apparently it all depends on how the seagull is doing. We once got in her car and there was a loose chicken in there! The Retreat will be better for my waistline and expanding thighs but then Sage do the most incredible white chocolate cheesecake so I’m torn.
@salbert you look amazing and pleased yup our class went well. 10-13 years is a time when they start the hormones and moodiness Assertiveness awareness would be really good.
@marionse25 pleased you have your results but sorry to hear there is residual cancer. I hope you can decide with the help of your team what is best for you.
Hi everyone. I’m late joining this chat as I’ve just finished treatment. I was diagnosed with locally advanced HER2+ breast cancer last summer and had 6 cycles of TCHP chemo followed by 12 phesgo injections, a single mastectomy, then 15× radiotherapy. I’ve been lucky as most of this has gone as well as possible. I managed to keep my hair thanks to the cold cap and stayed fairly healthy during chemo, healed up well after surgery and didn’t find radio too bad. I was also very lucky to have a complete response to chemo which amazed me as the tumour was quite big. Right now I’m so grateful for the NHS and would like to share my experience of treatment if it can help anyone at all.
One of the hardest things for me this year has been having strange unexplained symptoms that have made me worry about secondary cancer - a couple of months of weird burning headaches in the winter and pains in my upper back over the summer. Thankfully the scans have been clear but my mind has gone into dark places about recurrence. I guess that’s something we all have to live with and I can only hope that the worry gets less as time goes on.
My next oncology appointment is about to happen- so far I’ve resisted going on letrozole as my ER score is only 3 and I’ve already got osteoporosis. I’d be interested to hear any thoughts and as I’ve said I’m happy to share experiences of treatment.
Hallo Sal,
I hope since your post in December you are feeling a bit better. You are my first contact on this forum so wishing you well
Kind regards
Peggy
Oh hello @peggy3 and @gi53 - How lovely of you to join us. Never too late. No such thing! It’s so great that you are out the other side @gi53 and thanks for sharing your journey as it’s always good to hear of success stories. Also, the more of us join the conversation, the stronger we become. It goes to show how many of us there are. I guess we are all going to worry about recurrence, however hard we try not to. Have you done the Moving Forward course? I think it is really supposed to help with those feelings and teaches us how to cope with them. I know some of the women on here have done it.
@peggy3 I’m so happy you’ve made contact. Welcome! Where are you on the journey?
I have just discovered tgat my residual cancer was a whopping 24mm so not that small! Compare to my overall 9cm of tumors itbis relatively small but still! That makes me even more confused. I will speak to mu surgeon on Thursday.
Thank you for always finding the right words. You really are leading this HER2 pack!
By the way you are looking really great. I won’t show my current head yet, my pic is from July towards the end of chemo. Unfortunately my hair has turned from blond to brown and looks like candy floss. It is a good 15cm lomg already so I won’t complain. It is however totally unmanageable so I am hoping I can get a trim with a charity as I am not comfortable going to a regular hairdresser.
Hi newbies and regulars.
I think we will allworry sbout every ache snd pain after finishing treatment, especially if check ups are not so often. Ive booked for moving foreard course locally, but just hope i will have finished radio by then, not sure yet. @salbert i love your pic of you beaming into camera with new hair. All i’ve got so far is a layer of grey fluff and horrors moustache hair coming back! I’m using the fabulois Grow Strong Hair Oil from Mauli Rituals for my scalp and also the brow oil (expensive, but gifted to me) . @marionse i was thinking of you. What a dilemma you have with the Phesgo and Kadcyla and it dors seem odd not to have radio. Perhaps if you go for Phesgo that option could be discussed? What do i know! Yes, thank goodness you had mastectomy. Hope you are feeling better physically anyway.
I’m getting a bit nervous about my follow up with surgeon on Friday, i was quite confident immediately after surgery, but now i’ve got the ‘what if’s’ . Its that dreadful word ‘waiting’ again.
Penny
Why, thank you! That oil sounds good. Looks like it is all natural as well. What a lovely gift. Please let us know how Friday goes. When I went for my histopathology results, I told myself I would be cool with whatever the outcome was but of course you are getting a bit nervous. Whatever happens, at least they will be onto it and dealing with it. Crossing everything for you.
Hi @balchik - It is confusing, isn’t it. It is common to just have a lumpectomy and radiotherapy only, if it isn’t that advanced or in your lymph nodes or is not HER2+ etc. I was told I would just have a lumpectomy and radiotherapy but then they found invasive HER2+ cancer which was in 2 lymph nodes which meant I got the belt and braces. Where are you in your treatment?
I have finished my treatment now, lumpectomy, excision, 5 sessions of radiotherapy. Prescribed Tamoxifen for 5 years, but taking my chances without as I’m 76 & prefer quality of life.
I will discuss with my surgeon on Thursday. I was a bit annoyed yesterday when I received my onco’s letter. It states ‘no radiotherapy to be confirmed with surgeon’ and that I have agreed to continue Phesgo. Also quite shocked that a 82mm DCIS was found in addition to the 24mm IDC. One more reason to question the no rasiotherapy… Who knows if I won’t get more bad surprises on Thursday.
I am tempted to ask for kadcyla and attempt the cannulas, only if I can switch back to phesgo if it does not work.
I hope your appointment goes well. Waiting is so tough we have all been there and I can’t find a way to deal with fears.
I am feeling very low and I have booked myself on the moving forward course at Kings College. I have also emailed my boss to say I don’t think I will be back to work on 30 September,
My dressing is falling apart and I have to wrap myself in cling film to shower. Part of my right breast area is exposed and my scar is hideous. I thought my surgeon had used glue but it looks like poor stitching. I am dreading to discover the rest of the scars!
I am still in pain and struggle to sleep. Still waiting to hear from Physio at the Marsden. Thinking that I will have to spend more hours in public transport is not filling me with joy.
my 80s hair do was a perm gone wrong crossed with a mullet 
, mind you I’d take any hair at all at the moment, my baldy head feels like a fuzzy felt 
Waiting for results is horrid. Denial and distraction are my way of dealing with it.
) Dr Ring is so good and so knowledgeable. I really do have total faith in him so I’m absolutely sure he wouldn’t say you don’t need radiotherapy if it wasn’t the case. I am having it starting next month as I had lymph node involvement. My cording has improved massively by doing the arm exercises that the physio at Marsden gave me. Be kind to yourself as you’ve really been through it and you’ve only just had surgery. You need time to recover and have a good think about it all. One day we will be at Marsden at the same place at the same time! Also, are you sure that you have adopted a cat? Just make sure it isn’t a cougar or something. 
That made me laugh out loud. I actually did have a mullet after that hairdo as one of my ‘best friends’ convinced me that I would look better with one and that she should cut off my big blonde flicks. Needless to say, it was absolutely dreadful and everyone told me so. I have just got past the fuzzy felt stage now and my hair is growing back super fast. In fact I will post a pic now of me this morning, very excited to be returning to the drama studio. This is exactly 2 months post chemo hair. I’m intrigued to see how it returns. It seems dark and liberally peppered with grey at the moment. I have this idea that I will wear my grey with pride but have not written off a swift return to the hair dye aisle at Superdrug!
That oil sounds good. Looks like it is all natural as well. What a lovely gift. Please let us know how Friday goes. When I went for my histopathology results, I told myself I would be cool with whatever the outcome was but of course you are getting a bit nervous. Whatever happens, at least they will be onto it and dealing with it. Crossing everything for you.