Glad to see the IBC forum because it is different. Everyone else has a percentage survival rate given to them if it is “normal” bc. Everyone asks me for my prognosis and there is none. I was originally going to have a double mastectomy and then they decided at the last moment to just have a single one. That was last May and I have to say I have not had a pain free day yet! I am still so tired from the chemo and sore from the rads. Now I am told it is 2 years for the chemo to leave the body and 1 year for the rads. That was not what they said at the time - were they being kind or does everyone else feel as I do. I am also so emotionally on the surface - never cried in front of people before but the slightest thing sets me off now.
Is it IBC and the uncertainty or is it just me?!
Hi Penn - you are right it is so different and I don’t think people around us get that…
I’ve got my first check up today with the onc since i finished active treatment so be interesting to see how that goes… The last time i saw her at the end of rads i did ask her what my prognosis was and she just refused to say… as you say it is the uncertainty with IBC that is so hard and the knowledge that it really could come back at any time even years down the road…
Theresa x
Hello Penn,
It’s frustrating isn’t it?
I do get a little tired of explaining to people that IBC is a different form of BC.
My hope is that due to the fantastic improvement inthe successful dx and treatment of other types of BC more research will be directed towards the causes and treatment of IBC.
Our numbers are still relatively low, but I do feel they are increasing, hopefully this is because the doctors are getting better at knowing what to look for.
Theresa, I hope your appt went well today.
Jackie
Jackie - it went fine thanks… she doesn’t want to see me for 6 months unless i feel anything has changed etc. She does want me to have a ct scan as i have been having some breathlessness recently - she doesn’t think it is anything bad - but just wants to be sure…
I also finally got given a copy of my pathology report from my mastectomy today (i’ve been asking for it for months…) there wasn’t really anything suprising - but it did say the tumour was only 21mm by a couple of mm’s at the end - more like a piece of thread… which i knew - but it also said that the cells in even that were dying so the chemo had done a good job of destroying the tumour
Theresa
Acoording to the National Cancer institute (NCI…a reputable organisation in the USA) 5 year survival rates from IBC are between 25%-50%. These figures are based on large numbers of people with IBC and of course can’t tell you anything about an individual. They also of course relate to the past and there have been some treatment improvements recently.
IBC is considered the most aggressive of breast cancers, statistics are available, but I think doctors tend to be a bit reluctant to share them because they don’t look good.
I don’t have IBC but I do think everyone should have access to the information they want about the kind of cancer they have.
I agree that uncertainty is the hardest thing to live with.
Jane
Theresa, glad that your appointment went well although disappointing that maybe you didn’t get the answers you wanted.
I too am very breathless, so its good that you’re having a CT just to give you peace of mind. I will mention tomorrow when I see the Onc about my breathlessness, when I have Herceptin. They seem to blame everything on Herceptin here in France.
Thanks Jane for your comment, as always you are full of knowledge, its a shame it isn’t less scary though.
sorry pls ignore me, just noticed the thread below! im goin mad today!x
Hi Penn,
I can really identify with your comments. I only had my first round of treatment last week so I have a long way to go. Already I find it very hard when friends and colleagues tell me all the success stories of people they know who have had common types of breast cancer. I know they mean well but it brings it home how alone I feel. Everyone thinks of me as being a very strong person but the slightest thing sets me off now. I had a routine attendance meeting with my boss the other day and ended up crying like a baby! At least she has seen first hand why it’s not a good idea for me to be at work On the plus side, I can already see some positive results even after the first round of chemo. Lots of people with cancers they can’t see endure months of treatment without ever knowing if it’s making a difference.
The uncertainty is very hard but fingers crossed, survival rates for IBC are getting better. There have been very encouraging figures from the US for people who are HER2+ and receiving herceptin. It has been used there for much longer than here in the UK which is one reason their 5 year figures are starting to improve.
Hi everyone
I so know where you’re all coming from with the uncertainty of IBC, and the fact that I struggle with not getting anything to give me an idea about prognosis. My onc gave me 10% chance after my first three chemo cycles, as the tumor was very agressive, but then said things were better after my mastectomy, when the Tax & Her had done there thing.
I hate knowing that IBC is different, but feel a fraud explainijng that to people when they say I’m “better now”, I feel like I’ll only really feel better when I gett to five years, because at the moment that seems so far away.
I guess that’s the joy of being unusual …
Rebecca x
I’m just coming up to my one year from diagnosis now (it will be on May 27th…) and yes the worries if anything just seem to grow…
I recently scared myself by discovering about the PEV scale for staging IBC - PEV (poussee evolutive) according to that i was a PEV3 the worst sort as all of my breast was pink and skin affected at diagnosis (the PEV scale largely works on % of the breast that was pink / red at diagnosis 0%, up to 25%, up to 50% etc) but i’ve also read that it is quite rare for IBC to be ER+ and my ER was 8/8 and responded very quickly to chemo and had been virtually all destroyed by the chemo by the time of my mastectomy… I guess for all of us it is just a case of fingers crossed…
Theresa
I think one of the hardest things for me is knowing that I will always be on some kind of treatment due to my skin mets.
Yes there are people worse off than me whose options are limited, I realise that and I’m doing so well in other ways and will be 4 years post dx in October.
However I would like to be NED just once!
I still recall having had all the tests etc coming home and checking out the net for info about BC. I didn’t even realise at the time that there were different types. I read about IBC and truly thought well things could be worse I could have that rare type.
Must have upset someone big time musn’t I?!!!
Ah well back to Marsden tomorrow for next herceptin, onwards we go.
Love
Jackie xx