Probable IBC + freaking out

Hi , so sorry to hear that you are needing tests for IBC. I was recently diagnosed with it on the 1/02/22 as IBC stage 3c grade 2 er/pr/her2 positive. It was a really scary diagnosis as you are usually stage 3 before symptoms are found as mastitis has similar symptoms and there is usually no palpable lump and your skin can be involved as lymph channels can be blocked and look like orange peel. Everyone’s treatment plan will be different. I am getting neoadjuvant treatment first and this Wednesday will be my 4th Ec chemo treatment which will follow with 12 weekly paclitaxel chemo with phesgo injections 3 weekly as I am her2 positive then a radical mastectomy and possibly further chemo depending on the surgery or targeted therapy then radiation and hormone blockers for 10 years. This is all in the hope to be curative Nippyscone. Yours may vary and be different treatment wise but there are a lot of ladies on this site that will be here for you to ask advice or to vent to if you need to. Wishing you all the best in getting your tests done. Jxxx

Hi Nippyscone,

Sorry to hear you’re facing this very scary diagnosis. My GP was right on the ball and referred me straight away. As you probably know IBC is diagnosed mainly by clinical symptoms so after mammo, ultrasound and biopsy I was told on the day of the tests that I had cancer, obviously before the results of the biopsy. To say I was shocked was an understatement. 

I’m HER2 positive and have had chemo, then surgery then radiation. I had Herceptin and perjeta which started with my first lot of chemo. I had a near complete pathological response but had a tiny bit of residual cancer so was changed to the chemo/immunotherapy drug conjugate Kadcyla. Had my final treatment last week!

Treatments have improved a lot over the years so I would try and resist the urge to google as a lot of the info is outdated. I would recommend a fb group called The IBC Network. They are excellent.

I found the time between referral, diagnosis and starting treatment horrendous due to extreme anxiety. Once I had my treatment plan I felt a lot better. Hopefully once you have something positive to focus on, that is treatment, you will feel more in control too. There is no point beating yourself up over anything as it just wastes energy. Time to move forward now.

I sincerely hope you do not have IBC but want to assure that there is hope. Wishing you all the best. 

Bluebell.