I am new to this forum. I was diagnosed with HER2+ IBC in February and have undergone chemotherapy and a mastectomy since then; I am about to start 15 rounds of radiotherapy and will continue on PHESGO until February of next year.
I have just achieved PCR status, however, am still acutely aware of the risks associated with IBC. I was looking to share my story and outlook for other people (so they can see that good things can happen) as well as consolidate survivor stories that could be of help to both myself and to other people for when it becomes mentally difficult.
So . . . are there any other survivors out there keen to share their positive milestones and / or stories? It would be so lovely to chat to you! I find it so important for light to exist in what we all know can be a very dark experience.
Welcome to the forum . Sorry you haven’t had a reply yet ,hopefully someone who has had similar experience will respond soon .Good luck with your radiotherapy .x
Hello, just spotted your message. I was diagnosed with IBC 12 years ago.
I had chemo, mastectomy and then radiotherapy.
I hope radiotherapy is going well for you. I found it the easiest part of treatment, though very very tiring.
I don’t come on the forum very often so have just seen your post. In February 2018 I was diagnosed with her2+ IBC. I had FECT chemo with herceptin and perjeta, followed by mastectomy then 3 weeks radiotherapy. I also had herceptin injections every 3 weeks for what seemed like months! In August, fingers crossed, I will reach the 5 year all clear. I do have lasting fatigue from the treatment but at least I am still here! I hope your treatment has gone well.
I’m new to the forum as I was only diagnosed on Friday, but I’m so glad there are some stories on here to keep myself positive. I’ve had a diagnosis of triple negative IBC and the consultants have been brilliant about getting things sorted even before the official diagnosis, so I’m already set to start chemo tomorrow. I’m a little bit daunted as it’s been a lot to get my head around in a short space of time, but am going to keep positive that I can beat this and get through the treatment ok. Your stories give me hope that it’s possible, so thank you for adding your experiences.
First of all a big ?. It is so much to get your head around. I’m still trying to get my head round it all. I’m heading for chemo 6 on Thursday. I’m pencilled in for a mastectomy in august, followed by radiotherapy. I hadn’t realised you have to wait at least six months after the radiotherapy for reconstruction and that there can be a wait due to backlogs from covid but all in all you get through the chemo. I’ve managed to work most days- it’s a bit of distraction. In my experience, the chemo gets easier but the tiredness gets worse as you go on, but you do get through it. When I was first diagnosed, the thought of multiple sessions of chemo seemed like it would never come to an end, but I am now nearing the end. There is hope, hold on to it and keep in touch and let us know how you get on. I found tremendous strength from hearing about others with IBC xxx
Thanks @shareen for getting back to me and your positivity about the chemo. I’ve got 12 weekly sessions for chemo (with some weeks also getting immunotherapy) and then 4 more 3 weekly sessions before surgery. I don’t know if there is much of a gap between these and then the radiotherapy, but thanks for letting me know about the gap to reconstruction. It’s certainly a long process isn’t it. But we’re strong, capable women and we can do this!
It’s great that you’ve felt able to keep up with some work. I’ve been a bit unsure what to do because I normally have specific appointments in schools and didn’t know when I’d feel ok. Plus children aren’t exactly they’re a most hygienic of beings so feel that it’s not worth the risk of infection! Hoping I can do something home based during this time as I’m self employed and that’s an extra stress.
Sending you lots of positivity for getting through your remaining chemo sessions. You’ve done so well so far and it’s great that the end is in sight ?
I am jumping in as I see you have found this thread; it brings me joy to think that, in some way, it may help people to find extra strength when dealing with something so awful. It sounds like you are having a time of it with all of your treatments; keep going . . . you can do it.
I couldn’t help noticing that, perhaps, finances may be a concern for you being you are self-employed? I would recommend approach the DWP about Personal Independence Payments; these are not income assessed and based on how well you are and how much you are able to function amidst such significant health issues. I applied last year about two months after my diagnosis and still receive these payments today, even though I am back to my full-time professional role. It would be an idea to head to your nearest Maggie’s centre to be put in touch with somebody clued up on the benefits system as you are likely to be entitled to something as a result of your diagnosis. I hope this was in some way helpful; you can take as little or as much of this advice as you would like.
The reconstruction gap is long . . . so long that I am edging towards not going through with it; it is entirely each to their own though and there is no right or wrong way to do things!
@shareen, I really hope you are doing ok. You are absolutely smashing it; keep going! ❤️
@lynzoola thank you so much for taking the time to get back to me. It really does help me to feel more supported knowing there are lovely people on here to offer advice and positivity as I really want to keep hold of that as I go through this process ?.
My husband popped into the Maggie’s centre whilst I was having my first treatment and said they were really lovely and we could go in at any time to talk to them about the financial side of things, so we’ll definitely do that. Thanks for your tip about the DWP as well - I’ll definitely look into that as the thought of such a long stretch without an income is quite daunting otherwise.
It’s great to hear that you’re finding your way through all of the treatments and surgeries. Lots of big decisions, but I’m sure you’ll work out the right path for you, as you say. It definitely gives me hope for my own future path. Best of luck with it all xx
I’m sending a wee update (if that doesn’t give you a clue of my Scottishness, I don’t know what does) to say that I reached my #oneyearclear mark this week; heading into Edinburgh with a friend to celebrate that and also celebrate going back to my old job too. Although this is clearly shouting about where I am, I am actually posting it so other people who visit this site, particularly upon diagnosis, can see that you can get through the sh*tstorm and feel like you have a ’normal’ life again. It’s entirely the reason I created this thread; there was little in the way of positive stories when I needed to be able to read them. Hopefully, this thread does make a positive difference to how a person is feeling and provide some hope in what we know can be a very dark experience.
Wishing you all a wonderful weekend and thinking of you all as you navigate your different paths.
@lynzoola amazing news! Funnily enough I’m in Scotland too (Glasgow). This is exactly the kind of thing I was frantically searching for 6 months ago. My chemo is now complete, although I am going for another phesgo in 3 weeks. The mastectomy will be in 4 weeks time. Any hints or tips on preparing for the surgery are much appreciated. Getting to surgery feels like a significant milestone. Even though there is radiotherapy to follow the surgery and a long way still to go, there are points in chemo when you think it will never end and you will never get through it, but you do. I even have some fluff coming through on my hair- completely white but at least some indication it’s on it’s way back!
Sorry for the very late reply. For some reason I’ve not been able to post a reply on the forum for the last couple of weeks and now it’s changed over I can’t see what the last messages say
I’ve not had the easiest start to the treatment as they couldn’t give me my second dose as they thought I maybe had a delayed allergic reaction to the first. I’m now being given just one weekly chemo slowly and then both slowly with the immunotherapy every 3 weeks. It’s an 11 hour treatment day now that week but at least I can have it. Four sessions done now, so plodding on through. Hearing of your positive stories of getting through the treatment have kept me going. I know it’s not forever and I can get through it
Cas11 the forum has had an overhaul and been on read only mode for almost 2 weeks , things are still getting up and running I think .We are still finding our way around .
Just a quick shout out to all in treatment for IBC. I was diagnosed 20 years ago today (before Herceptin and other modern drugs were available on NHS) and I’m still here. I got to see my son, just 1 year old at the time, grow up and go to Uni. He should graduate this summer. I got to grow grey hair, get wrinkly skin and be middle aged.
I know how daunting diagnosis and treatment can be. I hope this survival story offers some hope to those who need it.
Hi, just wanted to jump in and say hi. Im just about to receive my 4th chemo battling against IBC. I’m just looking for someone who has been through the same as me as it’s so rare ;(
Hi @gail2020 . How are you holding up? The chemo days can feel like the darkest, but, 1 year later, i am through chemo, surgery and radiotherapy and had my final dose of phesgo two weeks ago. Im feeling well and just trying to get myself to normal! All of that seemed like it would never come, but it does, so hold on, and keep those spirits high! Xx
