Hi all I have recently been diagnosed with IBC only to discover the very next day it had also spread to my bones and after the bone density scan they have informed me it's very widespread. Well I just can't begin to describe how I felt and how I'm still trying to come to terms with it all as its only been a matter of weeks. I've commenced my chemo TAC (6 x 3) and just had my second round. Its not really agreeing with my digestive system but I'm managing ok. Ive not wanted to talk about it but I happened across your group and it was so great to see you all sharing your experiences and providing support. I'm based in Brisbane and attending the Royal Brisbane and Women's Hospital. They are such a great group of Docs and Nurses and make me feel good each time I go as it now seems to be my new second home. Does anyone have a portacath. I recently got one and I'm undecided as to if I like it I'd love to know your thoughts. Have a great day everyone :)

Hi Chrissy, So sorry we have to meet because of IBC. Its nice to have a good team looking after you even if all else seems bad. I had a good team at Cabrini Brighton Melbourne Makes a huge difference. Hopefully someone on this list will know about portacaths. The thing with IBC is that everyone is diagnosed at stage 3 or 4 because of the speed of it. Mine went to my lungs but with the treatment I'm Now NED. Not cured but they can't detect it. I wasn't going to have any treatment after being told I can't be cured, and they can only try and control it. I eventually agreed and so glad I did. We are all different but one thing I did do was keep up my vitamins to try and repair all the damage the chemo was doing to my body. Ask your doctor first. Mine said normal vitimins ok, although I read something about B vitamins might interfere so I left those out till the chemo was over. Not sure if that was the right thing to do or not, there was not a lot of info out there. Please keep in touch with us and let us know how you are going.

So sorry you have had to join us with BC, but you will find the support on this site is just amazing. I have finished chemo, and just wanted to tell you that your port-a-cath is your new best friend! After seeing others go through the routine of trying to find a usable vein each session, I was so thankful that with the port, the nurses just linked me up and away we went - no pain, no fuss, no problems. You will be given a patch to wear for an hour before you go in to treatment, and the port area will be numb. It makes life easier when we most need it. I am in my 2nd week of radiotherapy now, and will have the port removed next month. I am on the Gold Coast and had my chemo at HOCA. The staff and the doctors are absolutely wonderful. It sounds like you have a great team also in Brisbane. All the best with your treatment - keep posting and let us know how you are going. Warmest wishes, Michelle xx

The first thing I noticed was that you wrote your blog at 3.40am!! Are you in the dexamethasone stage? Takes me back. I reached 2 years post diagnosis on the 7th September but who's counting? I sense your fear of the unknown & the worry and can so relate to what you're going through. I didn't have a portacath (they thought my veins were pretty good) but in the end, it was getting harder to find good ones. My treatment (chemo, double mastectomy & radio) seems a lifetime ago but I'm still taking Femara & will be on it for 5 years. I too live in Brisbane & I remember feeling quite isolated when I was first diagnosed as no one else seemed to have IBC. To date, I still haven't met anyone face to face, only via this website. It was a godsend to find this site & realise I wasn't alone. When you get an opportunity, do take advantage of all that Choices at the Wesley Hospital offers to women with breast & gynaecological cancer. I not only met some beautiful people there but also took advantage of wonderful classes & treatments they offered - pink pilates, massage, councilling, relaxation & meditation classes etc. It's all free & the people that run it are truly amazing. I wish you all the best over the coming months. The treatment is gruelling but so worth it in the end. I too had TAC. Please feel free to ask any questions of me & I'll try to help you. Terri xxx

Hi Terri Hehehe it isn't that stage but I was just having a troubling night. Sometimes when I wake up all I end up thinking about is cancer and I get frustrated. Luckily it's not too often though. Congratulations on reaching your 2 year post diagnosis I will be counting too. Everything has just happened so fast I feel like I've hardly had time to catch my breath. It's hard not knowing what to expect in the future. I'm also scared to have further tests and find out it has spread to my organs as well. I was hospitalised during my first round of chemo to get rehydrated after bad digestion. So it was a bad start but this time was much better. The Taxotere is one tough drug with many side effects. I'm prepared to do the hard yards tho to try and get more time. Thank you for the advice about the Wesley I shall investigate further. Chrissy Xxxx

I don't have IBC but like you was diagnosed with breast cancer and within a week found out I had widespread bony mets. A huge shock, so much that I spent every second of the day looking forward to it ending so I could forget everything while I was asleep. Had mastectomy and total axillary clearance, radiotherapy to bony bits that posed a problem - one close to spinal cord and one in hip that was likely to fracture - then Taxol (and Avastin on a trial). Every now and then whatever treatment I'm on stops working and I try a new one, there are heaps of treatments to try. I'm now on Xeloda, an oral chemo agent. I am now 5 years out, and can say you kind of get used to the uncertainty. I can definitely say that the past five years have in no way been the unhappiest years of my life. I've had lots of fun, and while a bit tired, continue to work at a fairly high level job 4 days a week, which to me is important. I know other people have other priorities, but whatever works for you! The internal thoughts that allow people to cope in such a dastardly situtation vary widely. I've done lots of reading! For me what works best is to tell myself (and others) that I will be able to cope with whatever life throws at me, and feel proud about that. So when I go for a scan or result, I try not to rely on a 'good', ie no progression of my disease, outcome. If this is the case, that's great, but rather than put all my psychological eggs in one basket, I tell myself that I don't need a good result to feel OK, and that I will cope with whatever result I am given. My cancer is yet to spread to other organs, so I suspect this will be another great challenge. But I'm fairly confident I'll be distressed for a while, and then settle into the new 'normal'. Don't know what will work for you but offer this strategy as an option. Thinking of you Kerri

Secondary bone cancer | BCNA Online Network

22 Replies

Michelle_R
Member
13 years ago
So sorry you have had to join us with BC, but you will find the support on this site is just amazing. I have finished chemo, and just wanted to tell you that your port-a-cath is your new best friend! After seeing others go through the routine of trying to find a usable vein each session, I was so thankful that with the port, the nurses just linked me up and away we went - no pain, no fuss, no problems. You will be given a patch to wear for an hour before you go in to treatment, and the port area will be numb. It makes life easier when we most need it.

I am in my 2nd week of radiotherapy now, and will have the port removed next month. I am on the Gold Coast and had my chemo at HOCA. The staff and the doctors are absolutely wonderful. It sounds like you have a great team also in Brisbane. All the best with your treatment - keep posting and let us know how you are going. Warmest wishes, Michelle xx
WendyA
Member
13 years ago
Hi Chrissy, So sorry we have to meet because of IBC. Its nice to have a good team looking after you even if all else seems bad. I had a good team at Cabrini Brighton Melbourne Makes a huge difference. Hopefully someone on this list will know about portacaths. The thing with IBC is that everyone is diagnosed at stage 3 or 4 because of the speed of it. Mine went to my lungs but with the treatment I'm Now NED. Not cured but they can't detect it. I wasn't going to have any treatment after being told I can't be cured, and they can only try and control it. I eventually agreed and so glad I did. We are all different but one thing I did do was keep up my vitamins to try and repair all the damage the chemo was doing to my body. Ask your doctor first. Mine said normal vitimins ok, although I read something about B vitamins might interfere so I left those out till the chemo was over. Not sure if that was the right thing to do or not, there was not a lot of info out there. Please keep in touch with us and let us know how you are going.

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Secondary bone cancer

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