Hi all,
Been lurking around and finally got the guts to come here and post this.
On the 18th July 2024 got given the news that I have IBC on my left Breast, caught it early…it’s sensitive to Estrogen and Progesterone but HER2 Negative…
I am a 55 year old woman, this was a shock…just finished intensive EC chemo on 2 weekly cycles and about to Start Taxel Chemo on weekly basis for next 12 weeks.
MRI shows no real reduction on lesion, but surgeon happy that it is reacting…so I am happy, then read report received this morning and hyperventilate when you read it …
I will loose my left breast in January 2025 and follow this with 12 weeks of Radiotherapy…
I am the one that is always there for all, the one that can do anything but this new normal is me feeling scared and dependent on my family. Chemo has not been kind and between managing existing IBS, Chemo side effects and finding myself not able to walk at times…I feel like I am loosing myself…
When in work, all is great as I can compartmentalise but at 2am…I am a scared little girl…
Anyone else that can share similar experiences, is it normal?
Hi, I haven’t got any advice for you but just wanted to say you are not alone, we are all scared at times during this journey. I agree the long nights are the worst. Sometimes I listen to talk radio or LBC as a way to divert my thoughts. Sending love x
I’m not in your situation but it’s ok and quite normal to be scared - why would you not be . You have had an awful shock reading your report - these things are much better gone through person to person , such a shame that you have just seen it written down. It’s not surprising either that you are feeling low when you have been left feeling so unwell and knowing that you still have a way to go . It sounds as though you are doing as well as anyone could expect .
You are amazing for having continued to work and though compartmentalizing is good and gives you a break from your cancer sometimes it does mean that the fear is bound to break through at other times and the wee small hours are the worst and I doubt there’s anyone among us who hasn’t been a scared little girl or boy at 2am somewhere along the line. I’m wondering if you’ve considered counselling or asking your GP for something to help you sleep .
It’s hard when your role within the family changes but everyone at some point needs support and at the moment it’s you - but it won’t always be because you will get through this.
For inflammatory breast cancer your treatment is right: chemo first, then mastectomy and then radiotherapy. As you are ER+ and PR + they will add hormone treatment at some point too to protect you from further issues.
It’s a tough journey physically and emotionally. And you are good to have started some counselling to help make sense of things.
Do avoid dr Google as she’s well out of date and often wrong.
Do you have a good nurse specialist in your hospital to talk to about this letter?
To keep you up to date?
When I first suspected IBC, yep…did mistake of reading up on Google…that sent me into a bit of a Spiral…
Thing was in April had the usual schedule Mammogram and results all came back as , no issues see you in 3 years, then this, started hurting (all my doctors previously said, breast cancer doesn’t hurt…wrong!) and it kept on growing, Google at least pointed me in right direction like… get seen urgently and don’t take no.
Hi there. I posted some months ago re IBC. My left breast was so swollen heavy and painful I had to walk with a walking stick. No mastecomy as it had spread to my liver and lymph glands. Had docetoxel and phesgo chemo for 6 treatments and now on phesgo or an alternative for ever. My oncologist told me they couldn’t cure it but could treat it so I’ll go with that. Scans have shown no cancer cells present but it will come back. I have an amazing team at Weston Park in Sheffield and MacMillan unit in Chesterfield. Fortunately after first chemo treatment my breast was back to normal. I haven’t googled or investigated anything else they have told me. Right or wrong, I don’t want to know, just rock on with treatment. I do hope you have a good team around you and plenty of support xx
Another IBC er here. So sorry to hear of your diagnosis. My team are way more positive than dr google. I used to be a medical professional, im my own worst enemy sometimes as i read and read. Your tx order sounds right. Im triple pos so herceptin perjeta in the mix. Im amazed you kept working through chemo. Thats a testimony to how strong you are but it also has to come out somewhere i guess. Put your phone away after 7. Give yourself time to process it earlier in day if you can. Counselling helped me a lot. Im still scared, i cry a fair bit. I didnt think i was angry but it comes out sideways at times. I have three young kids /teens and the uncertainty is horrendous. Due to have surgery on monday, but i have a bloody cold. Pre op fri hoping i will be okay by then. Anyway, sending big hugs. Take each step as it comes. Another IBCer told me the chemo was worst bit so im holding onto that, that physically at leaat it might get a bit easier now the pre op chemo is done. Xx
I find night time is hideous for me. I sleep for some of the night then wide awake from 02.08. I havent had chemo or radiotherapy but on letrozole and the joint pain is waking me. I shouldnt moan as its nothing compared to you but jeepers nelly, it is so painful. I cant take ibuprofen as i have huge bilateral blood clots on my lungs which has caused an enlarged heart. But i feel your pain about the thoughts at night. Take care my lovely and one day at a time. Love, Sarah xx
@jaffaboob thank you, yes still working but being well supported… I agree after 7pm phone is put away…I love reading so use this as a way to get brain to calm down… now a month after this initial post… I am doing good, I am more positive most days and am being more concious of not overwhelming myself with the project work I do…
I hope your surgery went ahead and you’re almost ready for the next step… Hugs and you’re in my thoughts
Thanks yes three weeks post op today and was greenlighted for little dip in sea (nothing vigourous). I also got complete pathological response which i really wasnt expecting. I can see a light at the end of the tunnel. Meeting the radiologist on 17th as its IBC, they arent going down any treatment sparing pathways.
I am distracting myself with a college course for work and its good to have a bit of distraction and cancer free time too. I think id bite the head off my collegues though (im a bit direct at best of times)… so im off until i figure out who i am a bit more. But sometimes i feel guilty as on a technical level i could prob manage some stuff and God knows we could do with money, but emotionally im not there yet.
So honestly, ypu have a lot to hold together and you’re doing great. Glad to hear its settling down a bit. Xx
You’re doing amazing… your body is kicking butt … so glad that it’s positive, enjoy the upcoming light at end of tunnel, I know you still have the Radiotherapy to go…but so so close.
Though I am working now, I am taking time off for surgery and the radiotherapy… today also going to see Gene specialist…Mom has IMPC stage 4 , triple positive …and only found out this weekend that on my dad’s side there is various cancers…
But I understand you, I am working now, and have to be careful however after surgery, I am going to be in different headspace… good luck, hugs .
Sorry to hear about your mam. Best of luck with gene specialist. I believe (and would hope) they do counselling as part of it so you are prepped for impact of any potential results but it sounds like you are all over it either way.
