Inflammatory breast cancer

Hi have you just been recently diagnosed? I had IBC in 2022. I had neoadjuvant chemotherapy first then I started  phesgo injection as I was triple positive IBC   I then had my mastectomy and started on letrozole(to stop the production of oestrogen in the body) After that I had 3 weeks of radiation to mop up any stray cells. There is the IBC network uk that you can join and you will get lots of advice and information. Sending healing hugs. Hope always.  jxxx️

Yes they told me yesterday after CT scan and MRI scan so neoadjuvant  chemo , mastectomy and radiotherapy just waiting for an app to start this 

Can you just Google Ibc network 

How were you on your treatment ?

Are you ok now ?

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Hi hun t how do tot feel about the diagnosis? We are a rare bunch as only 2-5% of all breast cancers are IBC. Try not to google as you don’t always get great information stick to breast cancer now, macmillan and the IBC network iuk is really good for information and support from a great bunch of women. . The treatment wasn’t easy but you manage to get through it depending on if you are hormone receptive, her2+ or triple negative your chemo will be specific to you.  Drink plenty going through treatment and take any medication that they give you after each cycle of chemo and remember to tell them if you have been really nauseous or how severe your side effects are and they can adjust the dosage and add in more anti nausea meds too. There is an international standard of Trinidad treatment for IBC for chemo, non skin sparing mastectomy and radiation also because you are always stage 3 when you have this cancer at diagnosis and some are stage 4 as lymph node involvement under your arm and in most cases they are  taken out so there is a chance it may have spread. Survival rates are going up and treatment is changing all the time which is great news. It may feel like you won’t be able to deal with the treatment and that it’s daunting the length of time it is going to take but it does pass quickly. Make yourself up a hospital bag with something to read or a tablet, sherbet lemons helped with the metallic taste you can get plenty of fluids and some people used pineapple juice at home. Warm socks and a blanket if you are getting the cold cap done.  When you lose your hair that can be uncomfortable until it is all out and wear a soft cap in bed as it gets really cold. I now have more neuropathy in my legs and feet and the letrozole has affected my joints, I also have pain in my arm and on my front from the nerves being affected with the nodes taken out. I am doing ok 3 years down the line and so is my friends Ireland. There is a charity called look good feel better and the rub face to face and online free workshops to show you how to tie scarves and change your make up   Another great charity that ladies do free of charge is knitted knocker’s and and they knit bob to wear post mastectomy and also ones for swimming too. I will try and link you to the IBC network but I’m here if you want to chat and if I can help at all hun. You will find the strength to get through the treatment hun. Jxxx

Sorry I wasn’t able to copy in the link but I hope that you are able to join it from the photo hun. Jxxx

Thank you so much I will have a look at this.

I was a bit shocked about the diagnosis as they changed from invasive dct carcinoma to IBC just worried about all the treatment ahead , but also just want to get it started now ,it has been all the waiting between apps that has been worse like being in limbo xx 

When you have a treatment plan in place it calms your mind a little. You will find the strength to get through your treatment hun. What symptoms did you have that changed their mind to IBC? I had redness, orange peel skin, a large increase in the breast with thickening and an inverted nipple that has changed colour it all seemed to happen within less than 3 months. Jxxx