I have posted in “Do I have BC” & also “Waiting for results” but now I am joining “The Club”
Hello Ladies,
I have been pointed in your direction by “Rhapsodyangel”.
Yesterday I was officially diagnosed with Aggressive Inflammatory Breast Cancer (IBC), stage 3…it has spread to my Lymph nodes but possibly further but I have to await CT Scan in about ten days to know more along with MRI.
My mass is 12cm as it stands at the moment. As I understand it my diagnosis is quite rare and currently inoperable so I start Chemo next week for 3-4 months to try and shrink it, hopefully followed by Mastectomy and then radiation and later on possible reconstruction.
I am lucky to be under great BC care, doctors and a lovely BC nurse and have a great hospice nearby that specialises in patients like me.
I intend to fight this tooth and nail and I will, I am 32 years old, married with 3 children, 4,8,and 12 and a wonderful husband, friends and family, so I have lots to fight for.
Is there anyone with a similar diagnosis? There is not much info out there about IBC but I intend to change that!
I’m also just looking for friends who can help guide my way and vice versa…Thankyou for all your support so far!
So sorry that you have had to join us here but you have come to the right place for support and friendship.
I was DX with IBC in august 08. Like you my lump was far too large initially for surgery, and my treatment began with 6 months of chemo. The lump shrunk and I had a bi lateral MX and node clearance becaue it was there too followed by rads and now I am in the middle of 5 years of hormone treatment.
A DX of IBC is scary because as you have found it is one of the more aggressive ones, but please don’t do too much searching on the internet. A lot of the information on IBC out there is out of date, treatment has moved on.
Ask anything you want, either myself or one of the other IBC ladies( who I 'm sure will be along soon)will do our best to help. There is no such thing as a silly question, believe me I have asked some strange things in the past. What area of the country are you in?
Just wanted to say ‘hello’ and sorry you are here with us. Just as Andie said there are no ‘silly questions’ so ask away. I’m not in a position to help with the IBC but many others are!
Hi Emma, so sorry you have had to join us, this is the best place to find support and information about IBC, as Andie said don’t google it will scare you and much of it is out of date now.
I was Dx almost 12 months ago, very similar to you in size and stage.
I was given 6 tax,carboplatin and herceptin combo,I had Ct scan after and it showed massive shrinkage,I am continuing with the Herceptin for life as I also had spread to Lungs, but the chemo reduced my mets from multiple in both Lungs to one , so small it cannot be measured.
I had Mx and full node clearance in September followed by Rads for 3 weeks in October, I am now feeling quite well and getting back to a normal ish life. I won’t try to kid you it was an easy ride because it was n’t but 10 months down the road from start of treatment have gone quickly and it is all worthwhile , so grit your teeth and get ready for the hardest roller coaster of your life , be kind to yourself and except help when ever it is offered.
I truelly hope your scans come back with no spread, once your treatment starts it does get easier to cope with.
Good Luck and keep in touch.
Jean.
So sorry you have had to join this club, I am an avid follower of these forums, but don’t post too often.
I just wanted to send you a hug ((((((()))))))
I was diagnosed with IBC in April 2009, very similar story to you, but at that time no spread, I too was inoperable at diagnosis but following 18 weeks of chemo, at mastectomy, no cancerous cells were found in the tissue.
It’s a tough road but the ladies on here are a fantastic support and a mine if information.
Unfortunatly for me I was diagnosed with a completely different cancer in the other breast in May 2011, this is quiet rare too but I’ve never done anything by halves LOL
I feel relatively well and live life to the max.
I hope you are beginning to get your head round this, it is such a massive shock especially when you are so young
Keep posting and ask as many daft questions as you like.
Your kids will be invaluable on this journey, mine give me a reason to smile every day
Take care
Mandy xxxxx
Another Mandy here and another IBC girl! Lots of support here for you. Its usual procedure for chemo before mastectomy in IBC. I had great response to chemo and there was only scar tissue left in the breast when I had surgery. Chemo started in March 2009 - Mastectomy August 2009. Rads Oct/Nov 2009. LD recon Nov. 2010. This year I’ve had 2 lots of lipo-fill (fat from stomach yay!) and reduction and uplift of my other boob to match. Still a respectable 34c! Tattoo for new nipple in Feb so almost complete! I’m also an indefinate herceptin user as suspected liver mets from the start,questionable at the start but disappeared after chemo so chances are it was. I feel very well and am full of energy (walked six miles today around the coast path). Unfortunately I have appt. on 3rd with Onc. as I have now a tumor on the head of my pancreas - very rare apparently - so prob more chemo(i’v asked for a kind one as I dont want to stop my active life style) and may have a exploratory op to find out whats going on. apparently I’m a bit of a mystery and unique -my onc said I’m ‘revoltingly well’.
I’ve rambled a bit - sorry, but hopefully help you realize you can make it thro’ it all and you can live a full and active life and have more pert boobs to boot!!! I also follow the forums but don’t post that often. I’ve picked up lots of good advice and ideas here to help me through each stage. Please ask any questions we are all here to help.
All the best and hi to all the other ibc girls out there xxxx
I just want to thank you for all your replies and it is nice to know although few of us I am not alone! :O)
I haven’t googled as such but have seen there is little or no info out there as well as very outdated!
SO…I have started a blog, on FB…mainly for me as I love my words but also for my friends and family and maybe others in our shoes too out there!
I will keep posting but am going to keep the blog upto date too.
I’m sorry to read of your diagnosis, the first few days and weeks are can difficult when coming to terms with things and getting to grips with your treatment plans, etc.
As well as the support you are receiving on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
Also, do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000 and are open again tomorrow and then as normal, 9-5 Monday to Friday and 9-2 Saturday.
I was diagnosed with IBC in May last year and I was 35yrs old. I have had 6 cycles of chemo FEC-T (3 FEC and 3 Taxotare), mastectomy and now am having radiotherapy. I am 36 now and have 3 rads left to go. My IBC spread to my lymph nodes in armpit so full node clearance. My IBC is oestrogen positive too.
The FEC chemo was hard, taxotare was better. I got blood clots from the FEC so had hickman line put in. My advice is to always think positive, I know it sounds like a cliche but it has helped me no end. I will be happy to help in anyway I can, it is tough, but you can get through it. Add me as a contact for private messages if you want to chat.
Keep strong, ask for help when you need it and KEEP POSITIVE, you can beat this…
Love Babs
xxx
Well today I had my first Chemo…If you are following my blog you will see how it went! :O) 3 cycles of FEC, followed by 3 cycles of FEC-T and go from there…
It’s been a long day…Well chemo went fine once the canular was in and I’d run my arm under a hot tap to call out the dissapearing veins at the mention at the word “needle”! Really it wasn’t so bad!..First I had some Anti sickness & steroids and some saline, followed by Whisky, Vodka chaser and a sherry!! Flushed through individually with Saline. I started my Chemo at 11am and was done by 1.10pm…It all went fine, felt abit queazy with the whisky and had a funny nose thing going on for about 20 minutes with the sherry!!
I played a little supermarket sweep with my trolley round the unit as nearly 3 litres of fluid makes a weak bladder, was already told by one of the nurses to stop causing trouble…I think she’s got my measure!! lol ;O)
After Chemo was done I had my CT for my neck, chest, pelvis, abdomen etc…guess what, that dye stuff they inject was worse than the Chemo I actually felt like I was going to piss myself and was on fire!! I’d opt for Chemo anyday!!
Anyway afew hours on I am taking my Anti sickness tablets, have had a sleep and something to eat. So far I feel VERY tired, abit nauseous, and abit achy along with a headache, but the water and ginger biccies are out!
Thankyou for all your messages I do appreciate them xxx xxx
I saw my diagnosis in black and white today: Inflammatory carcinoma ER8, PGR 5, HER2 Negative.
Sending all lots of love and thankyou’s, will keep you posted xx
Sorry I am late with posting, I don’t browse the IBC threads much these days.
I was like you, dx in June 2008 with a mass of 8cm, had 6 rounds of chemo (taxotere), then by the time it had shrunk down to 2.5 cm I had a mx, followed by 5 weeks of rads and treatment with Herceptin for a year. I had all nodes removed but luckily all were ok.
I’m doing well now, last year I had a DIEP reconstruction in February and then in December a small tidy up operation so now I have 2 symmetrical breasts and a nice cleavage again.
I’ve been warned that I must always look out for anything unusual on the skin, but there is no reason really why I can’t be in remission long term
Ask away if you have questions and I hope all your chemo treatments are kind to you, without too many side effects.
Hi like you I was diagnosed with iBC July 2011 I have had 6 months chemo but the tumour had only shrunk slightly from 7cm to 4cm I had mastectomy in December and complete removal of all lymph nodes undrer my arm which all proved to have cancer activity. I am now about to start 15 sessions of radiotherapy on enlarged lymph nodes in my chest wall and above my collarbone. I coped ok with the chemo felt well for the first two days following infusion, then tired for about 7-10 days and felt well enough to continue all activities including golf, dancing and walking during the 3rd week. I was not sick although I did take all the antisickness pills they gave me.
I am trying to stay positive and I am looking forward to a holiday as soon as I finish the rads. Good luck with the journey it is not all bad you meet lots of nice people in the chemo unit and the macmillan nurses are great - if you are lucky you can get complementary therapy at the hospital for you and whoever takes you. my friend and I had hot stone, reiki and indian head massage.
Stay posiitive good luck
Good to see you are getting to grips with the chemo. It took me two sessions to figure out how not to be sick after chemo.
I found out in June 2011 the I had IDC and IBC, I also had mets in my lung and some nodes was also affected. I has 18 weeks of FEC-T chemo and it the end of it a CT scan showed my lungs were clear. In December I had a full mastectomy, with full node clearance and apart from a build of fluid after the drain came out everything has gone really well. My tumour had started out at 5 x 5 cm and when removed had gone down to 13mm. I no longer have any cancer cells.
I am just waiting on appt for 5 weeks of Rads to start and apart from Tamoxifen for 5 years that is me done.
I have started to go out walking with my friends again and have worked full time throughout. I figured right at the beginning that this illness is as much about a state of mind is it is about anything else. I will be doing the Walk the Walk in May which is my target to get fit again by.
I too have been writing a blog if you want to read it omgno.wordpress.com/ it helps me and my family and friends who read it.
We are a select club but we all will get through it.
You sound an amazing lady, keep up with the positive thinking & keep strong.
xxx