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Inflammatory Breast Cancer

2 REPLIES 2
ChristineP22
Member

Re: Inflammatory Breast Cancer

Hello Lesley

I just came across your post. By now you have probably started chemo, and may even have had your second one? I hope the side effects are OK(ish) for you. 

I was diagnosed with inflammatory breast cancer just over 10 years ago. Like you I had chemo and mastectomy and radiotherapy. It was not easy, but it had to be done (that is what I kept telling myself anyway, in between the other thoughts).

For advice a few tips to start with: 

(1) take it one step at the time.

(2) keep a diary of what treatment you are having, and the side effects on a daily basis after each new chemo session. I found that they repeated themselves, so it was useful to know which days I felt sick or tired or ok or actually quite good.

(3) bring the diary with you to each appointment and write down questions you have in advance, and any answers when you get them (or you will just forget)

(4) ask for someone to be there with you at important onolocgy meetings (not always possible with COVID),

(5) surround yourself with nice people and be kind to yourself

(6) I found the helplines from Breast Cancer Now and Macmillan very useful, and it was very calming to speak to an independent party who know what they were talking about.  Avoid Dr Google (as she is often not correct, or out of date, and unnecessarily scary). 

As for treatment and finding how other people cope etc, my understanding is that there are many other people going through this combination of 'chemo then mastectomy then radiotherapy', so look out for their experiences on this forum too. Is there a thread 'Chemo starting in May' that might be helpful?

sending you a virtual hug and lots of good wishes

Shareena_BCN
Community Manager

Re: Inflammatory Breast Cancer

Hi @Lesley50 I'm very sorry to hear this and it sounds like a lot for you to take in.

If you have any questions or just want to talk things through, our Breast Care Nurses are available on our free phone Helpline - 0808 800 6000. 

Sending my best wishes,
Shareena
Forum Moderation Team

Lesley50
Member

Inflammatory Breast Cancer

I have been recently diagnosed with inflammatory breast cancer, Grade 3 and HER2+ which has spread to axillary lymph nodes.  I am facing 15 months of treatment with 6 months of chemotherapy starting next week, followed by a mastectomy and level 3 axillary node clearance, radiotherapy to the chest wall and 9 months of phesgo treatment (to complete a 12 month course which should start this coming August).  It seems very daunting.  Has anyone with a similar diagnosis who's received/endured all this treatment got any advice?