I don’t think I’ve come across any one else with IBC here. I’m in Oxfordshire, how about you?
Me neither. I’ve been trying to find another, but I guess as it’s rare it’s unlikely.
I am between London and Devon at the moment (am needing to stay with family at times.) x
Good luck with the rest of the docetaxol x.
Thank you, I will see how that goes. Let me how your surgery goes. Sending 
Hey Sbee
All I can say is that it’s a journey. Not an easy one but you get used to it over time. You have to go through a kind of grief curve.
It isn’t necessarily anything that you have done. I too was super fit vegetarian etc so was shocked to find that I had BC. I think mine was possibly linked to a drug that my mum had taken when pregnant with me. ‘DES’ has been in the news recently.
It must be tough living alone but you have thousands of other BC friends who will be cheering you on.
I think it’s important to do research to optimise your personal care. Good luck. X
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Thank you. I’m just desperate to know and understand the reason.
Hi @sbee @heya_25 I have ibc I have my last cycle of doc this week and then I’ll have my mastectomy and radiotherapy. How are you both doing. It’s hard to find anyone with ibc it’s so scary x
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Hi @sacha - i know, it’s very isolating.
I am meant to have 2 more doc. Really don’t want a mastectomy.
When were you diagnosed? May I ask how old you are? Xx
I couldn’t even find anyone on someone like me with it as a volunteer…
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Hi @sacha - are you there?
Hi @sacha it’s hard to find others with IBC and this can be scary. I’m on the ibc Facebook group where there are lots of lovely ladies who have been through or are going through the same treatment.
I had my last chemo a couple of weeks ago, I was really glad to finish and get over the worst side effects. I’m still easily tired though. I’m hoping to enjoy a couple of weeks now before my surgery in mid June. I’m trying not to think too much about it at the moment so I don’t get too anxious.
How have you been doing so far?
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Hi @heya_25 - how are feeling post chemo? Have you had any mri’s pre op?
I still feel tired all the time but all the worst side effects like bone pain and a rash have gone. My taste is pretty much almost back as well. The last chemo was hard because everyone was saying yay it’s the last one, but you still have to get through it. I’m trying to do walking but not being great at it as I don’t feel fit and want to get fitter before surgery.
I had an MRI scan which showed a reduction in the tumour to about half and my lymph nodes look ‘normalised’ but my oncologist warned me they might still find cancer in them after surgery. She had also warned me that because I’m ER+ not to expect the chemo to get rid of all the cancer. She seemed very happy with the results.
@sbee I hope they have managed to help you with the side effects of chemo. Will you be meeting your surgeon and having a scan soon? I had mine before my last chemo so I would know what the next steps are.
@heya_25 My last docetaxel was reduced by 25% but was still very tough. I have 2 more to go.
I really hope your side effects improve soon. X
You’ve done so well to get this far. I hope your side effects aren’t as bad and you can tolerate the last two more easily.
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Thank you @heya_25 - it’s the mental side I’m really struggling with, but the dose reduction did help…
Well done for finishing yours! Have they given you any tips to get ready for surgery?
Mine is planned in for September but chemo ends at the end of June so I imagine it will be before that… X
Hi @sbee, I know ibc is so rare. I’m 52.
I’m having a mastectomy hopefully next month. With ibc you have to have a skin sparing one and reconstruction a year later because it’s the only way to treat it. I’m on a ibc fb group and it’s really good, one of the main admin ladies is lovely and she knows everything about it and the guidelines that should be followed xx
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Hi @heya_25 I found chemo hard but have my last one on Friday I can’t wait. I’ve had a lot cancelled because my white blood cells are low so hoping this last one goes ahead.
I’m on an ibc facebook group it’s really good is Caroline sands admin on the group your in if so it’s the same one. Have you got a date for your op, I’m hoping I’m not waiting too long because I only had a partial response to chemo and I have a large tumour so want it gone asap but being totally flat on one side is going to take some getting used to xx
Hi @sacha - skin sparing or non skin sparing? I really really don’t want to have a mastectomy.
I have only found 3 people with it online. It’s very isolating and no one seems to know much about it.
Hi @sbee I’m so sorry have only just seen my notification in my junk mail.
How are you? I hope you’re doing ok.
How did your op go? Mines on the 11th July.
I hope everything went well xx
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