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I've just been diagnosed with Inflammatory Breast Cancer

(21 Posts)
NemosMum Wed 09-Aug-17 18:47:02

I've been undergoing a series of biopsies in the last 3 weeks, and today I was diagnosed with Inflammatory Breast Cancer (IBC). Breast surgeon was lovely, but was clear I need what she called "the works" i.e. 6 - 8 rounds of chemo then mastectomy with clearage of all axillary lymph nodes, followed by radiotherapy and then other stuff as my cancer is positive for oestrogen and HER2, so Tamoxifen and Herceptin. Not looking for sympathy, I just want to get informed. Anyone have experience with IBC or the elements of treatment proposed? Have always valued the wisdom of Gransnet!

phoenix Wed 09-Aug-17 18:49:15

No experience,but sending every good wish xx

Wheniwasyourage Wed 09-Aug-17 19:03:22

Same from me flowers

Alima Wed 09-Aug-17 19:08:57

Me neither NemosMum but I just want to wish you well for your treatment and full recovery.

hulahoop Wed 09-Aug-17 19:26:10

I had different type of cancer had mastectomy and chemo it's a big shock isn't it once treatment starts you feel like you are doing something . If I can help you can pm me I joined breast cancer forum which helped best wishes take care ??

Menopaws Wed 09-Aug-17 22:03:33

Good luck Nmum

merlotgran Wed 09-Aug-17 22:07:40

Best wishes from me as well, NemosMum

Luckygirl Wed 09-Aug-17 22:09:51

Sending good wishes to you - I am sure there will be people on here who can advise. They are a tough lot on here! flowers

Cherrytree59 Wed 09-Aug-17 22:14:49

Best wishes flowers

Indinana Wed 09-Aug-17 22:16:07

Best wishes from me too - really hope all goes well for you, and hope you'll have some responses on here from people who've been there and can give you some reassurance flowers

granfromafar Wed 09-Aug-17 22:16:20

Lots of love coming your way. Makes my worryang about a tooth extraction pale into insignificance. flowers

downsized Thu 10-Aug-17 14:55:52

Having watched both my sisters and a cousin go through this, I would just like to send you all the very best as you go through this unwelcome part of your life. flowers

BBbevan Thu 10-Aug-17 15:06:28

Bless youNemosMum I too have no experience of this, but I wish you all the luck in the world.

whitewave Thu 10-Aug-17 15:48:18

nemosmum not your type of breast cancer so I can't help with anything sensible. I did have a form of breast cancer and can remember the utter panic I felt during the time between diagnosis and treatment. Once treatment starts though I felt that I was doing something positive towards getting rid if it and felt more in control somehow.

All the very best of luck especially through the next few gruelling months.

gillybob Thu 10-Aug-17 16:22:51

The statistics that one in every eight women in the UK will develop breast cancer at some point in their life is very alarming and I guess this means it will eventually touch most of us either directly or indirectly.

I wish you well over the next weeks and months NemosMum . Stay strong and for goodness sake get well soon.

Sending you lots of sunshine for a bright future ahead.

Teetime Thu 10-Aug-17 17:28:43

nemosmum I am so sorry but I hope the treatment makes you strong and well again very soon xxx

silverlining48 Thu 10-Aug-17 17:38:11

So sorry, a terrible shock i know. Though being hormone receptive and being able to have tamoxifen is a good thing, i think. Well i hope so as it is seen as a positive in my daughters treatment . Good luck to you. We all wish you well.

PetitePepite Fri 11-Aug-17 11:48:30

Hello,
I discovered your message through my search on internet about IBC. I did have one IBC in April 2012, appeared in one night ! I had 6 rounds of chemo (TEC which is taxotere + epirubicin+cyclophosphamid) every 3 weeks. Mastectomy of right breast and also clearage of lymph nodes. 27 radiotherapies and then tamoxifen which I could not bear (a lot of pain and could not walk properly) replaced by letrozole. I had a complete response. And was declared NED at the end of December 2012. I am French, administrator of a French speaking group on Facebook for advanced and metastatic cancers such as IBC. If you need more information, please pm me. The treatments proposed to you make sense. I can provide information in English. Have a nice day.

Anannymous Fri 11-Aug-17 12:36:13

Hello, sorry to hear of your diagnosis. I was diagnosed with a different type of breast cancer 13 years ago (who knew there were so many different types of BC?). I gained a lot of support and information from Breast Cancer Care. They have a service called Someone Like Me where they can put you in touch with someone who has had a similar diagnosis. They also have a brilliant help line who I am sure would be able to answer any queries that you may have. Hope this helps.

TriciaF Fri 11-Aug-17 12:53:54

NemosMum - hoping that your treatment will be successful. What a nightmare, but with your positive outlook I'm sure you'll come out stronger.the other side. PG.
My mother's sister had a mastectomy, but this was in the late 1950s and she only had radiotherapy afterwards.

jaxy Tue 29-Aug-17 23:33:10

NemosMum-You have a difficult journey, but stay strong there is so much that can be done now, have you been put in touch with a Macmillan nurse they are brilliant and can offer lots of help and good advice also the Breast Cancer forums offer lots of help comfort and support, also just somewhere to just let of steam when your feeling angry or upset
wishing you well and sending a BIG HUG
Jaxy