I was just diagnosed with ibc and am seeing the oncologist tomorrow. i am 46. At the moment this is beyond surreal as I am the strong one in the family who is never ill and looks after everyone else and at the moment i am trying to cope by pretending its some horrible but minor dental problem. also trying to avoid the temptation to self medicate with gin as i think i am having blood samples taken tomorrow.
The difficult thing is how to tell people. I did not share with my husband initially but he was with me when i was told. I have not yet told my fatheryet, he is 82 and has a chronic lung condition. does anyone have any suggestions on how to tell him without putting him in hospital? Thankfully no children to have to tell.
Firstly, welcome to the forums, I hope you will find it a great source of information and support.
Sorry to read of your recent diagnosis, I’m sure some of the other users will be along soon to offer you their experiences and support.
In the meantime you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
Hi squeakymouse,
I am very sorry that you have just been diagnosed with IBC. I hope your appointment today with you oncologist will help you understand your treatment plan. That will give you a little more to focus on, which many people find very helpful.
I was diagnosed with ibc just over a year ago, and have had chemo, surgery and radiotherapy. You will find a few others with ibc lurking on this forum, so you are not alone. There s a special ibc subforum here too. Lots of lovely ladies happy to provide comfort and share their stories.
Telling people is a hard thing to do. I did tell some people in person, some by email, or over the phone. I think there are some bcc or Macmillan leaflets which give some useful tips on talking to people about cancer. their websites also give lots of very good info on all aspects of treatment etc.
With very warm wishes to you
Christine
Thanks for your support, I found the subforum. Having spent yesterday scaring myself silly searching the internet for IBC I was encouraged to see several people on the IBC forum who had been diagnosed several years ago and are still posting! My breast cancer nurse specifically told me not to go looking on the internet under any circumstances and now I know why.
I have Grade 3 which has spread to lymph nodes not hormone sensitive and borderline HER2 awaiting further tests so might be triple negative. Next week I am having CT scans etc looking for mets. Chemo starting 7 May or thereabouts, FEC-T. Whatever all that means (I’m an engineer not a medical person!). Luckily my other breast and its lymph nodes are clear. Hoping to get a flu jab and happy pills from GP tomorrow. Haven’t told all the family yet, may need happy pills for this.
Work have been brilliantly supportive and have let me work from home or take time off to deal with meltdowns.
Best wishes for your treatment and may all of us who have IBC continue posting for many years to come!
Hi Squeakymouse
Another IBC lady here, Dx just over 1 year ago with Lung mets at the start. had usual treatment, Chemo,Mx and full node clearance then rads,currently having herceptin for as long as it works and also letrozole.My treatment worked almost completely, just left with a tiny tiny met in my lung but it’s as good as gone(my Onc’s words).
I had 6 tax,I think it depends on whether they find secondaries,
You are not alone, we know how your feeling at the moment but it does get easier once treatment starts.
Feel free to PM me if you need any help.
Jean
I was diagnosed with IBC last October, had 6 x TAC, mx and anc and I am currently getting radiotherapy. All my scans came back clear at the beginning so no mets at the moment. I was warned about not googling it, and I have only looked at reputable sites such as bcc and macmillan. The chemo can be tough but doable, hopefully once you have a plan in place it will help you deal with it. PM me if you want.
Another IBC lady here. I was diagnosed last year November, finished chemo (6 FEC-T) six weeks ago, had mastectomy and axillary node clearance (they were core biopsied at diagnosis and positive) two weeks ago and waiting to start radiotherapy. I’m ER pos and HER2 pos, have Herceptin every three weeks till Feb (hopefully) and start Tamoxifen soon. I was very disappointed to be told it’s IBC and initially I was told it’s grade 2 dutual. I have read now since that it originates as a ducutal or lobular breast cancer.
Keep in touch, we’re all very supportive to each other.
Thanks for all your messages of support, sending cyberhugs back and delayed action cyberhugs to anyone who is feeling sore after their mastectomy!
Its hard to believe you have a serious illness when you feel fine physically. I have told everyone at work and my inbox is now filling up with messages of support and I feel like some kind of fraud!
hi sqeakymouse,
i to have ibc dx sept 2010, had chemo irst mx recon and then 15 rads but now i have lung mets going for scan results on monday mondat on reccurantly on chemo and hercetin and i feel fine chemo is hard going at times but it is doable good lick with your treatment.