Diagnosed with IBC yesterday

Brand new to this so I think I might’ve posted this elsewhere but I can’t find it??

Had a lump, just like a cyst really but GP said probably not, referred for tests, had needle biopsy, shows cancer in breast and lymph nodes, got to have CT scan (hopefully next week but waiting to hear) then disucss treatment options.

Just would love to hear some positive stuff, please, I’m devastated. I’m 41, got a 3 year old little boy and I want to be here to see him grow up!

I’m veering between being convinced I can get through this to the other end of the spectrum.

Can anyone please, please give me something to cling onto? Thank you x

Hi wubbly

Here’s the link to the post you made and I have posted to you in there too

breastcancercare.org.uk/forum/viewtopic.php?f=103&t=21458&p=398871#p398871

Hi wubbly and welcome to the BCC forums

I am sure your fellow users will be along shortly with support and their experiences. You may also find BCC’s inflammatory breast cancer publication helpful to read, here’s the link:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/72/

We also have a new resource pack for those newly diagnosed which you may order via this link:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/82/

Our helpline is open weekdays 9-5 and Sat 9-2 on 0808 800 6000, you are welocme to call for further support and information from our specialist nurses and trained helpliners.

Our Mummy’s Lump book may help you to talk to your little boy about what is happening at the moment if you feel this is appropraite for him and you can order a copy here:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/18/

Take care
Lucy

Hi wubbly i just posted on the other thread you found as well x

it is also in this ibc sub forum and called “ladies with ibc come and say hi”

Just to tell you something about myself… I was diagnosed May 27th 2008 - my left breast turned bright pink suddenly and i went to my gp who tried anti-biotics but when they had no effect i was referred to the breast clinic where i was diagnosed with ibc almost immediatly… i really did look like a text book case… and a giant strawberry… the first week i had ct scan, chest xray, heart scan, full nuclear bone scan… went back the next wed for results and all were clear so i went straight from that room to the chemo room for my first cycle… my tumour at diagnosis was 5.5cm after 8 chemo cycles (6 months) i had a mastectomy and full lymph node clearance and in the lab all they could find was one tiny thread of ibc that was 2.1cm x 2mm (literally like a piece of thread…) and all that had was some scattered dying cancer cells along it… and in the lymph nodes they found just one that had dead cancer cells in…
i then had 4 weeks of radiotherapy (20 doses) and am now on tamoxifen for 5 years… all this means i am soon coming up to my 2 year anniversary… i do hope that gives you some hope… x

i won’t lie chemo isn’t nice - but it is doable honestly and you really will find so much support on here from everyone…

Theresa x

Thank you for that Theresa, you have cheered me up with your story, that’s just what I need to hear - thank you so much for taking the time to share your experience with me, I want to fill up on good news right now.

There’s still so much I don’t know yet, what size it is, what stage it is, what type it is etc. I just want to get this scan out of the way and see what it is I’m up against. Do you know how long the results take to come through?

I’ve found my other post now (just too impatient me!) so should I just post on that thread do you think?

hi wubbly, so sorry youve had to join us I was diagnosed with invasive ductal cancer grade 3 stage 2a triple negative in october 07 and i can remember feeling just about every emotion possible but i decided that i was going to be positive i have 3 kids who were 6 13 and 15 at the time and i knew i just had to get through it i had a mastectamy in nov followed by chemo and rads its not easy but as others would say it is dooable to be honest it waant as bad as i thought it would be, you will have your bad days we all do but youll pick yourself up and carry on. Keep in touch and let us know how your doing youll get a lot of support on this site

Hi Sylvia’s star, thank you for your post. I think the hardest thing to think about is my little boy, but at the same time, he’s the one thing that is still totally normal after this shell shock - bless him!

My GP has managed to arrange a CT scan for Sunday, so I’m feeling a whole lot calmer and grounded now that is sorted. It’s helped me to focus just on the next step rather than random scary thoughts about the future.

At the minute, I’m not worrying about the masectomy or chemo, they’re just things I’ll have to tackle once we get there but it’s good to know that it’s manageable. I’ve avoided reading about all of the down sides of the treatment just yet.

The thinking positive thing is something I’m slowly beginning to achieve now I think, at least that’s something we still have total control over!

Good luck SS, I’ll keep posting as things move forward. I think I’m going to be a regular now xxxx

Hi Wubbly, I think I posted on your other thread but never mind, I can’t find it either.

I was dx in June 2008 with IBC (although the IBC part was dx later), I had a mass of over 8 cms although I didn’t display all the usual redness of skin, just a massive swelling and hardness of the entire breast and a nipple discharge which was bloody.

Anyway, here I am, I had 6 rounds of taxotere, then a mastectomy followed after a short break by 5 weeks of rads. I finished a year of Herceptin last July. This year I am hoping to have reconstruction, a “good” breast reduction and a wonderful tummy tuck!

Do you know yet if you are HER2+ or hormone +?

I consider myself very lucky, my bone scan, liver scan and lung xray were all clear and since the dx I’ve had another bone scan and lung CT scan and apart from slight damage to my lungs caused by radiotherapy, oh and a broken rib caused by coughing - everything has been “clear”.

At the moment it will seem a long way ahead for you, but you can do it, we are all here to assist and support when you need it.

Good luck on Sunday and take care, let us know how it goes

P xx

Hi wubbly hope your scan goes ok on sunday its still early days for you yet it takes time to get your head round all of this, especially when youve got a small child. xx