IBC
IBC feeling horribly alone at the moment. trust me to get a rare, aggressive breast cancer.
Anyone else out there with IBC?
Love
Jackie
x
Just in case If you don’t get any replies soon from here try BreastCancer.org who have a forum for IBC.
Sorry you have the nasty diagnosis and hope that you find good support soon.
IBC Hi Jackie - sorry, I can’t help with IDC, I just have the common garden variety of invasive ductal cancer, but do understand where you are coming from. If you search the postings and archives on this site, you will find many posts from people (hate to alienate our wonderful male friends here) that have had inflammatory breast cancer and can maybe help you.
As Phoebe said, breastcancer.org (an American site) is wonderful - a bit different to this one, which I prefer, but nontheless informative, as they are often years ahead in new treatments. There is another site I occasionally dip into - “Ask the Doctor - Breast Cancer” answered by the Cleveland Clinic in Ohio - the questions are answered by a clinical nurse specialist in breast cancer rather than a Consultant - html is: www.medhelp.org/forums/breastCancer/wwwboard.html. You can post a query there with no payment required, unlike some of Medhelp sites where they require you to pay 19 for a question. They are very concise and to the point, but have a wealth of experience and information.
Take care,
love, Liz.
IBC not IDC Sorry - made a typo there. Meant to say IBC. Two many glassed of white wine this evening.
Liz.
For fitzy I am sorry you are having such a difficult time, please feel free to contact out free phone helpline on 0808 800 6000 if you would like to talk to someone in confidence about how you are feeling at the moment.
Everyone on our helpline either has experience of breast cancer or is a breast care nurse.
The team comes from a variety of backgrounds, so callers get to talk to someone who has an understanding of the issues they’re facing.
The team is able to talk about both technical and emotional issues surrounding breast cancer and breast health.
Kind regards
Forum Host
Breast Cancer Care
Thank you for your kind replies.
I shall investigate the sites you mention with interest.
take care,
Love
Jackie
x
FOR FITZY IBC I am so sorry to hear how you are feeling, but fully understand as i too
was dx with Inflamatory breast cancer in 0ct '04. At the begining all i wanted was to speak to someone with this type of breast cancer, which BCC was able to do through there peer group where by someone with similar circumstances can phone you if you wish, i did this on two occasions which did help. I will update my profile and if i can be of any help to you then dont hesitate to post as i always look on this site. Take care
love megan
IBC - Me too Hi,
Sorry you are feeling so terrible about your diagnosis, but hope some of the replies you have had have gone some way to make you feel a little better. I was diagnosed with moderately advanced IBC in July 2004 and at the time didn’t even want to know exactly what my diagnosis was. I thought if I didn’t know then I couldn’t be looking for a negative prognosis. Luckily I had an extremely good response to the chemo, and have since had surgery and radiotherapy. I have had several check-ups and up to yet my blood tests, etc., have all come back fine. I feel really well (only the usual aches and pains that I am sure we all have) and am waiting to go in for reconstruction this week. The reconstruction has really lifed my spirits as I figure that the NHS wouldn’t spend so much money on me if they didn’t think it was worth it.
I too have looked at the American websites and I have to say have found them a little scary, may be too much information for me. Remember you are never alone. There are some great people on this forum and the information and support they provide is excellent. Try contacting your breast care nurse to see if she knows anyone in your area with IBC who you could meet up with. I was in hospital with one other lady and it was great to meet up with someone who was having the same treatment so we could compare notes!
Hope you can keep your spirits up.
Best wishes.
Gilly
another IBCer Hi FItzy - I think you managed to track me down through the other site, but for you and any other IBC’ers out there - you’re not on your own.
I do scan this site now and again, but if you need to track me down you can get me through www.amazonheart.com - just look up the contacts page, and I’m the one in the UK. Feel free to get in touch.
There’s also a wonderful woman in Durham (Laney) who’s set up a charity just for IBC - she’s 6 years NED herself and offers wonderful support and a wealth of information - you can find out more through www.ibcuk.net. In addition to support, her charity aims to raise the profile of IBC so that people can be diagnosed more quickly, and they also hope to be able to fund research into IBC, which is sorely neglected in the medical world.
Hello megan, gilly and of course janeaway,
Thank you so much for taking the trouble to reply.
I do feel so much better knowing there are a few of us out there, not that I’d wish this on anyone. Just knowing that you are all doing well and are a few years post treatment lifts my spirits enormously.
I think the way the surgeons spoke to me, so kindly but so concerned, scared the living daylights out of me.
I have contacted Laney, as Janeaway suggested and can confirm that she is absolutely brilliant!
I will certainly keep in touch with you all on this forum too.
by the way Janeaway, GP dx folliculitis today , (the spots.) Strong antibiotics and savlon cream! another relief!
Love
Jackie
x
How are you Hello to Megan and Gilly,
Just wondering how you both are.
I’m due to see the onc on 5th Oct to decide if herceptin is working well enough or whether they think it’s time to step in with RT.
Feeling a little nervous about this decision.
Hope you’re both doing well,
Love
Jackie
xx
Had a rough few weeks Hi Jackie
Just to let you know that I am thinking about you and hope that the right decision is made for you regarding the RT. I have to say that out of all the treatments I had the RT was about the easiest, having said that I work across the corridor from the department so I was travelling anyway. I know things are different for everyone and like I say hope the right decisions are made for you.
As my post headline will tell you I have had a rough few weeks since I last posted. The good news is that I had my six month check up and all is well from that point of view, got another appointment in six months. However, the reconstruction didn’t go too well. I haven’t posted on the reconstructive surgery part of the forum as I didn’t want to scare anyone. I was in hospital nearly a fortnight and had three operations in five days which ended up with everything having to be taken away again! I was devastated but am slowly coming to terms with things. I figure I am no worse off than I was before it is just so disappointing to have waited so long to come away with nothing. Still we have to keep our heads up. My partner has been so supportive I don’t think I would have got through it all without him. Apparently there is around a 2% failure rate for the operation I had (bilateral DIEP) and my consultant said he had never seen anyone fail quite to spectacularly. They are thinking it may be something to do with the chemo I had and that my heart might not be pumping well enough to keep both reconstructions going. I just hope it doesn’t happen to anyone else and that I was the 2%.
Anyway I have rambled on enough. I hope you are well and wish you all the best for the 5th. It is the waiting around that always did me. I don’t know whether to be thankful that I am both hormone and HER negative so I haven’t had to make decisions about further treatment!.
Take care.
Gilly.
x
Hello Gilly,
Great to hear from you.
Goodness me you’ve been through the mill though haven’t you?
I’m so sorry that you’re reconstruction was unsuccessful. You really have had a dreadful time, and must have been so disappointed. It takes a little time to adjust to the disappointments but as you so rightly say you are no worse off physically, more emotionally battered and bruised.
I hope that you are regaining your strength and taking it easy, three ops in five days is a lot to go through.
Fantastic news at your 6 monthly check though, so encouraging,.Here’s to the next 6 months.
Take Care Gilly,
Love
Jackie
xxxx
your not alone hi jackie i no this post might be a little late but i too have ibc n no what you mean its a little scary isnt it ! i have had two chemos and have to go for another mammogram as onc is not happy with the tumour n im a little scared at the mo may have to change chemo !hope you are ok n hope to speak with you soon lots of love jo xxxxxx
her2support.org has a new IBC forum For her2+++ IBC breast cancer. her2support is generally a very positive and supportive website, although not everything is relevant, since the site is based in the US. There are at least two regular posters who have had stage IV IBC for a very long time and seem to know masses about her2 IBC. It’s a brand new forum, so you have to click on the message board button at the top of the main page to find it.
Thanks for that Christine,
Love
Jackie
x
Hello Jo,
good to hear from you. there aren’t too many of us so we need to stick together!
Hope your mammo goes well, let me know.
Try not to worry about the chemo, I knwo that’s easy to say.
What are you having?
I had 4 x FEC, which did nothing except give me the horrible side effects.
Was then supposed to have 4 x Taxotere, which was then increased to 6 cycles, finished end of July. It’s a very tough chemo but VERY successful. MRI showed tumour had shrunk considerably.
Yes I was supposed to have a mastectomy after cehmo but the skin on my breast hasn’t reacted as well as hoped, it’s still quite thick and orange peely. Have just had my 9th dose of herceptin, ( 6 were given with the taxotere) and am due a review next week (5th).
Keep in touch and take care,
Love
Jackie
xx
IBC support Hi Jackie, Jo & Gilly
Just thought I’d drop you a line as there seems to be a lot of us IBCers around of late.
There is another woman recently dx on the younger womens forum -Simmonite - and I see another lady Vivien who just posted on the secondaries forum.
Not sure if anyone has directed you to the US support group website -ibcsupport.org/ - I find it a bit more active than the UK one - which I think was referred to in an earlier post (though we had a flurry of emails the other day).
Hope its all going well with you - I see a couple of you have had recent set backs - if I can be of further help - let me know - or if you just want to vent - i’m here to listen.
cheers
Moira
Hi Moira,
Good to ‘meet’ you.
when i first discovered I had IBC I was so worried, trust me to get the most aggressive and rare BC!
However, as you say, several of us are now surfacing.
Hopefully we can pick each others brains and give support as needed.
Take Care,
Jackie
xx