Hi guys, I was just diagnosed with IBC last Thursday and this is my first time on this site. I think I am just feeling that I want to talk to some people that are going through the same thing. It has all happened so fast. I didn’t have any symptoms until about 3/4 weeks ago and now here I am waiting for appointments to come from the hospital for scans and chemo. First one came today for CT scan, but it is not until the 8th Nov and I am feeling a bit worried about the time scale, considering how fast it has all come on. Any advice gratefully received.
Sorry you find yourself here, I do not have Ibc but I follow a blog on facebook called my inflammatory breast cancer, the lady is called Emma and is on the forum here. Good luck
Wow, thanks for that. I am going to see if I can find it
sorry to hear of your dx but you have come to the right place, i was dx with ibc in sept 2010, the usual thing is scans first and bloods, you have chemo first, then about four to six weeks you have your mx then rads if you need it. the worse is the waiting but once you get your treatment plan you will feel better just take one day at a time and you will be fine, good luck x
Thanks Lollypop, it is just such a shock when they list all the treatment off in one hit. I am trying to not think about it too much, as all it does is cause stress, as you say one day at a time.
Can I ask did you work at all through your treatment? It just feels so weird to know I am going to get sick soon I have taken this week as a holiday, just to sort stufff out before it becomes real, if you know what I mean.
Hi Violet, so sorry you find yourself on here, but it’s the place to find support and info. there’s not many with IBC on here we are a select group !!
If you want we have formed a group on Facebook just for IBC girls, it’s a closed group so everything you post is private , we have a great bunch of ladies from the UK and also America, the girl some one has refered to is also on there, if you want to be added (I really hope you do !) just look for me on Face book
hi violet, i was working but just before i was dx i had back problems, and i was on the sick anyway, i worked for the nhs and they were very good with me,but lots of people do still work but everyone is different. take care x
Hi from me too. I’m one year down the line from you, DX of IBC in Nov 2011, had my 14th Herceptin today. So far so good, but still take one day at a time really. I didn’t work through chemo as I have a physical job, but being self employed I suited myself, husband was very supportive throughout (and still is). It’s all a shock when you’re told and very scary. The BCC helpline is really good, they always manage to lift you up. I was very worried abot the timescale too at first, it feels like treatment should have started “yesterday” already and found this waiting for first chemo the worst time really.
Hugs and love,
Hi Violet C
I was dx with IBC in June 2008, I don’t come on this thread very often but you are welcome to PM me with any questions.
Once I was dx for me it was all dealt with very quickly, I had liver scan, bone scan and chest xray all within a week of dx and I started chemo the following week after. I live in France so things are possibly a bit different.
Sorry you have had this dx, you will get through it, it is not always easy but you can do it. I’ve since had DIEP recon and it has gone well so don’t be put off if it is an option for you.
Sorry to hear about your dx. I was diagnosed in April 2012 and have had chemo and op, now just waiting for rads to start.
I was in the same place as you a few months ago and I know the waiting is the second worst part - the worst part is the moment you are told your diagnosis! However they told me a few days wait for the scan wouldn’t make a difference, and I had to wait nearly 3 weeks between diagnosis and starting chemo and this was OK too. I think they need this time to work out what chemo you need from your biopsy results.
I can work from home so I worked about 2 weeks out of every 3 during chemo, then I was back working from home about 10 days after op but have been in to the office most of the last 3 weeks. No site visits though (I’m an engineer) - our HR people thought this would be a bit too much.
I am also in the Facebook group some others have mentioned.
I am in the same position as you, and have my CT scan this evening. It is so so surreal - I don’t know how we are meant to get our heads around this. Feel free to contact me - we can get through this together…xxx
Hi Clairejh, hope your scan went ok, hang on in there, there is a facebook group with lots of ladies to give you help and support as well as this site. I know your scared and in an awful place at the moment but once you start your treatment things will get easier, I am 20 months on since Dx with stage 4 , currently NED and doing ok , it’s not all doom and gloom xx
Thanks Tillybob. I am off to see the oncologist today. xx
Hi Claire and Violet,
wishing you both every bit of success for each step of your coming treatment.
I was in your place just over two years ago too. My ibc diagnosis was hard, and the waiting for all the results too. I was shocked at the speed chemo which they started my chemo. But later found out that from other ladies here land on the Macmillan site that that was very normal for ibc patients. Like others say above - taking things a day at the time helped for me. I am now two years down the line . I did have chemo, surgery and then radiotherapy, followed by tamoxifen (As my ibc was oestrogen positive).
This site, and the Macmillan website have been so helpful to me during my journey. I hope you find support and information here too. Also there is an ibcsupport.org site in US. Other than that, please avoid dr google - there is lots of very much outdated information on ibc on the internet, which really is not helpful.
Hi guys, sorry I have been missing for a while, I just found all the info on here a bit much and am now trying not to read too much, but deal with everything as it happens. I find I can retain more then and it actually makes sense. I have to say your posts have been very supportive, thank you.
Clairejh, it looks like we are at roughly the same stage. I have my CT scan tomorrow, along with a marker being inserted into my lump. My bone scan was Tuesday and I have had my first bit of good news, it was all clear! I will be visiting the Oncologist next week and hopefully starting chemo the week after. Hopefully we can support each other through each step of this.
Hugs to you all xx
Hello all, I am new to this too, was diagnosed with IBC stage 3 end of September 2012, have had 2 FEC with third on Monday. Saw oncologist yesterday and nothing has changed so going onto Taxotere (?) not sure of spelling, but read all side effects and really worried.
I know everyone is different but just wondered how others got on and any advice would be much appreciated.
Had all scans which thankfully were clear (was a bit like winning the lottery as I worried myself silly over these).
Hi skippy9 and welcome to the BCC forums
I am sure your fellow users will be along with support and shared experiences for you soon, in addition our helpliners are here to support you and offer further information on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays.
I am posting a link to the ‘treatments’ BCC page where you will further support ideas and information which may help over the coming months:
Hello skippy. I too am on the FEC-T regime with little change after 3 FEC’s (its not uncommon I think). Theres a few of us on the september chemo thread who had the same experience
I too was dreading Tax as I had a very bad time after my 3rd FEC. I had my first Tax on 15th November and found it easier (am nearly back to normal now hopefully). The main effects I found were oral thrush, taste changes, balance problems and bone pain (everywhere including face and jaw). No nausea though. The increased steroids did make me a bit loud though!
I’d advise to get some decent pain relief and look after your mouth. Hot water bottles really helped with pain. Try not to do much at all for a week after as the fatigue is quite bad too. You might find it difficult to sleep too so try and take your steroids before 4pm (get advice from your chemo nurses)
Best of luck skippy x
I have also been diagnosed with IBC in November, just going for third FEC tomorrow, not looking forward to it, they alwayhave e problems with canulas.
As people say I am taking one step at a time but have not foundation anybody else who has had this and my doctor did not know. About it either. Was diagnosed with mastitis for 3-4 weeks and on anti biotics. Then sent to hospital as not clearing. Got a scan after a couple of hiccups and told that no abcess, they wiwas thought it was cancer. When appt after biopsy got cancelled spoke to cancer nurse who told me that they were treating as inflammatory breast cancer.
have lost nearly getting in, getting used to wearing scarves and hats. Did anybody else get pain with this cancer, my boob and underarm have been sore throughout and this seems to be one of the differences as other people have no pain at all.
Hope others can help with answer to questions
Sorry to read it took so long for you to get referred to hospital. I too was diagnosed with mastitis, but was lucky enough to get referred to hospital straight away, even though the doctor didn’t think it was cancer.
It sounds like you are about the same stage as myself and Clairejh. I have just had my 3rd chemo yesterday and can’t believe I am now half way through. Like you I am wearing hats, I have got a wig, but feel happy in my hats.
I have had pain in my breast from the start, not all the time, but on and off I now picture the pain being the chemo killing the cancer, which it seems to be doing, as it is getting smaller.