Hi all, Ive just been diagnosed with IBC,… well the Specialist is 99% certain that it is, i noticed hard tissue in my left breast about a month ago and went to my GP…i was really suspicious of it after researching ibc but he insisted that it could be Mastitis, so after a week of Antibiotics not working i went back and he referred me to a specialist at,…had to wait 3 bloody weeks!..spent watching my nipple slowly retract even more, …i had a gut feeling all was not well and just had a Biopsy today ( 4 bits) to be sure…although its sure, i just wanted to say hi and share the info with you all, i don’t get it im 39 and healthy, never even catch colds! and no History in family…i guess its straight in with Chemo, hopefully it hasn’t spread, my gut reaction is not yet…bloody scared myself by looking on the Web a bit too much at survival rates etc…does anyone know what the general survival rates are or if there’s been advances in treating it? only the stuff on the web does seem a little dated…its really nice to ready other people’s stories i think a positive attitude along with a realistic acceptance is the best foot forward for me…thanks guys, jo x
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Hi jo
Sorry that you have had to join us but you have come to the right place to meet with people who have been where you are now…
I wa s DX with IBC nearly 3 years ago and had all the recognised treatment that you are about to embark on. With IBC chemo nearly always comes first, when you go back to your clinic they will outline a treatment place for you. Please don’t read too much on the Internet, so much of the IBC information is out of date.
There is a category on the formum for IBC and if you post there others who have had the same DX will share their stories with you. Ask anything you want and I will do my best to help, either on the forum or via a pm. The treatment is no walk in the park, but it is doable. Stay in touch and let us know how you get on
Andie
just wanted to say hi and welcome to the forum. Its such a shock finding out you need to join, and you have had three weeks waiting for your suspicions to be confirms.
I do not have lbc,mines a few small idc tumors, but being diagnosed with any sort of cancer is like being hit with a sledge hammer.
have they said straight in with chemo, or is that what you have found on the internet?? Stop searching the web. Its hopelessly out of date. They bring out new drugs all the time and those results have not got into the survival rates…why not start another question in the LBC section, call it survival rate and people being treated now will be able to give you more idea, but every case is different.
Now you have the wait to see the resust of the biopsy and to wait to see what the treatment is, another frightening time. Do come on here and ask quesions as you think of them, or to rant as your emotions change, it a great bunch
Hi Jo. Sorry to see you here, but there are some really helpful people here.
You are currently at one of the worst bits - you know you have cancer, but don’t know much more than that. It does get a little easier once you know what will be hapenning.
Being young and healthy, the docs will be throwing everything at it. I rather suspect at the minimum you will have surgery, chemo and radiotherapy. Depending on the results of tests you may also be on some of the longer term treatments.
The next few weeks will probably see a few tests as well!
As others have said, keep away from Google for a while - you will only scare yourself with incorrct or outdated information.
My wife was diagnosed a little over a year ago now at the age of 40, and we have had a grotty year, but her treatment is now over and she is doing well.
Success rates are impeoving all the time.
Paul.
Hi Jo,
Sorry we’re having to welcome you to this forum - but hopefully you will find it really useful and a great support.
Obviously we’re hoping that you get the 1% that it’s not cancer.
There is an IBC section - it might be useful reading people’s posts on there - but I’m sure some of the ladies will be along soon. Don’t google survival stats etc. Medicine has moved on and everyone’s cancer is individual. Your oncologist will be the one to speak to regarding your prognosis etc if you want to know the specifics. I terrified myself with stats and don’t want to know my prognosis. All I need to know is that they’re treating me to cure me until there’s evidence of further spread.
The BCC helpline is also really useful and you can speak to breast care nurses who will be able to explain treatment options for IBC nowadays.
I’m 33, have a big lump (suspected IBC as my boob blew up and turned bright red - and had a month of various antibiotics before they’d test me for cancer - but they’re now saying it was inflammation), positive lymph nodes and went straight into chemo. I’m just over halfway through chemo now and I can honestly say it has been NOWHERE near as bad as I thought it would be. Hopefully the fact that you’re young and fit and healthy means you will breeze through it.
Once you’ve had any necessary scans and know exactly what you’re dealing with and the treatment plan you will feel more in control - although your atitude sounds pretty good from your post. I was a mess at the beginning!
Let us know how it goes.
x
Thanks so much everybody for your replies, it really does help being able to communicate with other people who have been though it, …i was feeling really lonely until now,…ever since yesterday afternoon ive felt like the Grim Reaper has been following me around!..its amazing what your mind does to you, it feels like an immediate Death Sentence, but after reading other peoples post’s i can see that there is hope, it can be beaten…
thanks again everybody x jo
Jo, I was one step away from investigating local funeral directors after just having a core biopsy, so don’t think you’re alone with feeling the presence of the Grim Reaper at this stage. But I’m still here, didn’t need the funeral directors and don’t intend needing them until I’ve had my telegram from the queen, thanks to the dicing and slicing, poisons, pills, potions and fryings that I’m having! It took a while for my approach to all of this to change, and that change mainly came about as the treatment plan came together and I found out exactly what I was dealing with. It’s the “not knowing” that messes with your mind so much, I’m certain of that, because when the imagination isn’t given any boundaries it can really run riot, and usually does! At least once you’ve got a clearer picture, that defines the boundaries that we all need to keep us bordering on sane.
Good luck with the next few months and onwards. It’s tough, but you’ll have lots of support from others on here who have been just a couple of steps in front of you on the same path.
CM
x
I agree with what everyone has said … please don’t look at the web unless its this site and don’t forget most people only post when they’re going through a rough patch or have a question. It won’t be as bsd as you think. I had a mastectomy and total node clearance in April and the surgery was a breeze. Had a lovely time recovering in my garden with friends before the dreaded chemo … that’s not such a breeze but I haven’t had so many side effects as to not cope … and on weeks 2 and 3 I still go to the gym. The best thing I did was ask to have a port fitted after chemo 3 … it saved my veins!
The waiting is the worst … once you know exactly what it is and how it is going to be dealt with and when you can move on. Then you can be a little bit more positive about the whole thing.
The obvious fear is natural when the docs use the word cancer. I know when my wife was initially diagnosed I was scared witless!
We are now a year on, with treatment over, she is recovering well, and in some ways she is quite a bit better then before diagnosis - she was seriously tired, and often went to bed as I put the boys in the bath. She now manages much later nights!
P.