Breast Cancer Now Forum

Hi Aud, sorry no-one replied earlier (I don't use this forum very often now), but hope your appointment went OK this week and you are on the way to finding out what your symptoms are xx. ... View more

Just posting to give hope to any newbies.  I was diagnosed 3 years ago Stage 3 Grade 3 IBC, and am now NED after chemo, mastectomy, rads and Herceptin, and I had a DIEP reconstruction a year ago.  Good luck to any of you just starting out on your journeys.  And there are other IBC ladies who were diagnosed several years ago who are still doing very well xx ... View more

So sorry to hear your news, KM, its just not fair after all you have been through. Fingers crossed for the rest of your tests and sending lots of hugs xxxxx Squeakymouse xx ... View more

Hi Westmids So sorry you are going through all this and no-one has replied to your post yet. I wish I could tell you you don't have IBC but I can't. Can you talk to your doctor again and at least get them to tell you what they think it is? Mine was IBC, but 14 months later I am still here, finished treatment and no sign of cancer. I wasn't breast feeding but my symptoms were pain, whole breast went swollen and hard, extensive red rash (on breast not around nipple) and orange peel skin. No nipple discharge. Also pain and swelling in glands under my arm on same side as breast. They found mine by ultrasound and physical exam, and two biopsies (one breast one lymph nodes underarm) came back positive. It didn't show up on mammogram. I had MRI but this was to check how extensive it was rather than for diagnosis. My MRI was two weeks after biopsy, hadn't heard about having to wait 6 weeks after a biopsy. Squeakymouse xx ... View more

Yay just had my last Herceptin and had my PICC line taken out!! Thats the end of treatment for me as I am not on tamoxifen. I am now just trying to get an appointment to see about a reconstruction. Squeakymouse xx ... View more

Good luck with your op Gillian, and hope Rattles and everyone else is OK. Haven't heard from Meerkat for a while. Squeakymouse xx ... View more

I had about 3 - 4 days off sick after each chemo then worked the rest of the time, mostly from home. I am an engineer with a mainly office job so not so much of an infection risk. I normally travel up to Scotland 1 - 2 times per month for site visits but was strongly discouraged from doing this during chemo. I found I needed to carry on working to give me a sense of at least some things carrying on as normal, otherwise I would have just sat around the house all day thinking crazy stuff and probably ended up in a psych ward. Squeakymouse xx ... View more

I had chemo in hospital but am having Herceptin at home. Having experienced both i would have preferred to have chemo at home too because there have been far fewer delays and mix-ups than there were at the hospital, and if the visiting nurse is running a bit late at least you can do something useful while you wait! Also it would be good if more GP surgery nurses were trained to do PICC line care and were allowed to use PICC line to take bloods. ... View more

Rattles hope you recover soon after your op. I have been reading the May 2013 chemo thread. It seems so strange to think that was us 12 months ago... Squeakymouse xx ... View more

One year ago today I was dx with IBC - 80mm x 60mm HER2+ ER- PR- with spread to lymph nodes but no mets. One year ago I did not think I would be here to write this post today but I made it! I had a complete response to chemo (they found no live cancer cells after op, just the remains of dead ones). Hope these posts here give some hope to people just starting out on this journey Squeakymouse xx ... View more

hope your op goes ok, Rattles, fingers crossed xx ... View more

Hi Sophie, I am sorry you are so scared. I had IBC last year (showed up on US and MRI but not mammogram), but it's not my place to say from your description whether or not it is IBC. Can you talk to another doctor at your surgery, or talk to your midwife? You could explain why you are so worried and perhaps ask them why they do not want to refer you. Squeakymouse xx ... View more

Hi Sunshine, I was DX last year with HER2 positive ER/PR negative BC, Stage 3 Grade 3 and I had chemo and started Herceptin before MX and ANC. I had a complete response to the chemo and herceptin which means that they found no live cancer cells in any of the tissue removed in the op, only the remains of dead cancer cells. This was from a tumour 80mm x 60mm with 6 lymph nodes involved, so a good result! I am still on Herceptin, 4 more to go. I have no children (through choice), but my periods started again 4 months after finishing chemo, which I wasn't expecting because I was 46 and thought it would bring on the menopause permanently because of my age. Squeakymouse xx ... View more

Hi Meerkat, sorry you are having such a horrible time, sending hugs and hope your scansturn out ok. Squeakymouse xx ... View more

Love the hair, Em! Hope you have a lovely holiday in Thailand. I haven't been on for a while as we went to Istanbul for our 15th wedding anniversary and I couldn't post on my phone. My energy levels have been up and down, some days very tired, but for a few days while we were on holiday I felt less tired than I had for years. Maybe it was the Turkish coffee, or the result of no longer working stupid hours, or perhaps I had had cancer for several years and been fighting it off but never realised. I had my hair done blonde. It seems to have grown back OK but eyebrows are still very thin and I still have to draw them on. Hope Meerkat is OK, haven't heard from her for a while. Hope everyone has a good weekend. Squeakymouse xx ... View more

Hi everyone Hope you are all OK. I have been having a bone mets scare (persistent very localised hip pain) over the last couple of months, finally got the xray results this week and there are no mets, just normal deterioration, so I am being referred for physio. I am blonde again (from mid brown). I tried to colour it myself last weekend using the same colour I have been using for years - and it came out orange. I then reapplied the same colour twice and it came out a lighter yellowy orange. So I went to the hairdressers today and am now extreme platinum blonde, lighter than I have ever been, which is just what I wanted! Hubby likes it. They had to bleach it to strip out the orangey yellow then put colour back on top. They also cut it at the back and sides as it is all random lengths and this made it look thicker. My hair is too short to have it coloured with foils so they had to put the bleach right up to my scalp and I had to sign a disclaimer but this wasn't nearly as scarey as the other consent forms I have signed this year. So the moral of the story is be careful if you are colouring your hair, even if you are using products you have used before! Squeakymouse xx ... View more

Hi all, I finally got my xray results this week - no bone mets, just minor deterioration probably normal ageing. Thanks for all your support, it looks like this discussion prompted some of you to get checked as well so hope everyone else's results were OK and that those of you who do have bone mets are not in too much pain and your mets are being controlled. I will try not to start any more secondaries scares...! Squeakymouse xx ... View more

Hi everyone, Meerkat - hope your appointment went OK this week. I haven't heard about that diet Em but hope it goes OK for you. I have about 1 1/2 inches of hair, and am not wearing a head covering or wig at the moment. I am planning to go blonde again next weekend (from mid-brown) so that my hair is at least the same colour as on my passport photo! I still look very pale and my skin is not brilliant - I look like one of those "don't do hard drugs or you will look like this" ads so might go for a facial too. Squeakymouse xx ... View more

Hi sorry to hear you have IBC. Its a huge shock when you are first diagnosed. I was diagnosed with it in April 2012. age 46. There is a separate bit of the forum on here for IBC people. Hope you get the support you need and your treatment goes ok. Squeakymouse xx ... View more