IBC lounge: roll call, support and just a good place to hang out

Noor, It's not just IBC they can't yet cure, BC itself doesn't have a cure either.

However, this study finds IBC recurrence odds with: "aggressive surgical resection to negative margins in the frame of tri-modality therapy with curative intent can lead to LRR rates that mirror non-IBC rates".

Of course, with non-IBC recurrence rates running at 30%, we still have have to take our chances as people here who have progressed to Stage IV will attest. But, while there are go guarantees for any of us, this study is good news because we don't appear to be at a heightened recurrence risk if we had aggressive treatment. This has to be good news IMO.

Hormonal treatment for BC stages I-III in Australia (and I believe the US) is advised to be 10 years minimum. Perhaps you could ask why the situation differs in France. While ever tamoxifen is working for me (I'm 66 now) I'll keep taking it, since I've never had a side effect to date.

Good luck with your surgery Meadow. I will be in your pocket for sure.

Hi everyone,

Thanks for posting the link to that article Traveltext. Reasons to be hopeful for the future treatment of IBC and proof that trimodality is the best way for it to be treated.

I am now the wearer of a lymphoedema arm sleeve. My case is mild with the swollen arm 15 to 20 per cent bigger. Going back to clinic on Thursday to check its working. I am feeling the benefits. Just a bit of a bummer on the fashion front!! But can't have everything I suppose.

Meadow, I am in your pocket already. Hope all goes well on Wednesday.

Have a good May Day everyone,

Love mini x

Mini, it took me a really long time to accept the fact that I had to wear a lymphoedema arm sleeve. I was refusing to have one for quite some time. I was feeling ashamed of it, it was a constant reminder etc. Until this happened: I was talking with a vague acquaintance for half an hour during lunch and at the end I noticed she was wearing a sleeve. I was so surprised. I, who were so consious about it and didn't notice it until we finished talking. At that moment I realized that people don't really pay attention / care.

As for the fashion part, as I said I've the oedema under control so I wear the sleeve at home, at yoga, while gardening etc. I don't wear it at work during the day. Travelling by plane requires wearing the sleeve. In the beginning I was trying to cover it, even in the summer. Now I just wear short sleeves T-shirts and don't really care.

Afrer all I've been through, the sleeve is the least of my problems.

Hi Traveltext

Sorry for the late reply about the machine. It's the Flexitouch by Tactile company. (hope my spelling is correct). You suit up, for me it's left arm, shoulder, chest and trunk, it goes 68 minutes. It mimics massage that I get in therapy. My lymphedema center set me up. It's covered 80 % by my insurance and they work with you for the balance. I still go to my therapist once a month for monitoring and if i get swelling I get back on the schedule with her. If my leg gets involved they will fit me for the leg attachment. I had training by a therapist using the machine. My dh helps me suit up. (only way i can describe it)

For me, it's made a huge difference.

interesting product valstim. Here's a link for those interested:

https://www.tactilemedical.com/products/flexitouch...

Hello everyone,

Thanks Moreshoes for the advice about arm sleeve and you were 100 % correct! Most people don't even notice that I am wearing it. The main thing is it's controlling the swelling. Was back at lymphoedema clinic during the week and don't have to see them again til August.

Had my 12th Kadcyla on Tuesday. Echo cardiogram still satisfactory so that's good news too.

It's exam time with the 2 older kids at university and youngest at home taking first year of A levels. Great to be here to support them.

Don't know if you can get BBC but there is a brilliant documentary called A Time To Live just out. It's about 12 people from age 23 to 69 facing terminal diagnosis. Well worth seeing if you can.

Wishing everyone well,

Mini x

Hi, newly diagnosed ibc. Scary times. All still so new. Also invasive ductal micropapiliary. No known node involvement. Secondary testing next wednesday. 7/8 and 8/8 for estr and progesterone but I don't yet know the significance of that.

Oh, and The IBC Network Foundation has an excellent and informative app that you might like to download.

Good news Meadow. Just keep sitting and not doing for a bit longer. Healing is your priority and then you'll be very useful around the place again, for sure!!

Winter is here, but it's a sort of fake winter at the moment, not cold at all.

Valstim, how's your health?

Hi TT and everyone here.

TT. Her negative. Chemo should start this week. Date tbc today. I think the combo of micropapiliary and ibc has had the team arguing about procedure.

I have two areas also on my left breast but the biopsy last Monday missed and came back with normal tissue, so they will do an MRI guided biopsy this week before chemo.

Hi Meadow. x

Mini, I finally got around to tracking down A Time To Live. A trailer of the series is available here: http://www.bbc.com/news/av/magazine-39950924/dying...

Looks like an excellent doco. Can't see that the whole thing is available outside the UK, but thanks for alerting us.

How's the LE?

TT, treatment still working. I was scanned in May and am NED. Nothing from the head down. If my July/Aug scans are the same, will move to CT scans every six months. Feel better than I have for 2 years

Thanks for asking. The drugs don't have too many side effects which is nice.

mara and mini, I love reading your posts that you are both feeling better! This is good news, returning to the joys of living.

TT, thanks for checking on me. Although I was probably one of the most reluctant Lat Flap patients ever, I can honestly say, so far it is a big success!. At 5 weeks post op I feel really so much better! Strength is returning, and although I do notice diminished overall strength on that side due to the rearrangement of muscle, it was a success. (So far...hesitant optimism!) Good things abound. Sending love and hugs all around the world, to my IBC family.