Hi all: I’ve never heard of “inflammatory breast cancer”, but I have read that once it’s diagnosed it’s already stage IV. I’m not even sure what that means and so I’m looking for information.
At this point, I’ve had a couple of mamograms and an ultrasound. The doctor said that I either have a skin infection that he can’t identify (had an infection three years ago in my hip joint that couldn’t be identified) or I have “a very aggressive form of inflammatory breast cancer.” I need to see a surgeon and have an MRI as quickly as possible.
I have two grown sons who have seen me through six hip replacements, a knee replacement and the infection that first of all nearly finished me off and then required removal of my hip (a replacement joint) and several months of antibiotic therapy before it could be put back in. They are real troopers, but they lost their Dad nine years ago and I think I should wait to tell them until the diagnosis is firm, my sister believes I should share now. I’m 65. I would appreciate the opinions of those of you who have been there. Thank you.
Hi Brenda_Mu
I am so glad you have found this forum to give you support at this time.
Unfortunately I have no experience with inflammatory breast cancer - however - here is a link to the forum, which covers this specific diagnosis. I am sure you will find a thread on there, which may be of help to you - to share your experience with others, who have the same diagnosis.
This is the link - forum.breastcancercare.org.uk/t5/Inflammatory-breast-cancer/bd-p/4454
Hugs
Sue x
Brenda I am so very sorry to hear that you are facing such uncertainty. The not knowing & not being able to speed up the process of finding out is certainly one of the hardest parts of all this. I’m sure the official response is ‘do you want to tell them & share this burden?’, & if the answer is yes, you should go ahead, but most of us found it particularly devastating to tell children & other family members, so my advice would be to perhaps wait until you know for sure? You will have to deal with their emotional response as well as your own & I know I had to focus on me at the time of diagnosis. For example, I asked my 2 sisters if they could be the ones to tell mum & support her, as I had enough on my plate. Do you have a close friend who could support you in the meanwhile? If not, please call the helpline. Other ladies will be along shortly to give you their view. I hope it’s a skin infection. Big hug xx
Hi Brenda Mu, Sorry, but I know nothing to help you about Inflammatory Breast Cancer.
However, I can identify with you over the people’wanting to play nurse’ irritation. I have several friends who i sometimes ask to come to the hospital with me if Im needing that little bit of support.
One, a very good friend sent me texts every day for a while, she also started sending me presents through the post…which is all very caring, but doesnt leave one any time to have a day or two off being a cancer patient. My partner, a very kind man, is pretty overwheming…I have worked out that he needs help himself. I almost never take him to the hodpital with me…he doesnt relax and keeps following me around…cant bear it if im out of sight…i find that very annoying and we have rows about it.
Regarding telling your sons…I guess you may have now made your choice on that decision? Its a hard one…but I was thinking that they seem to have been very resilient and right there for you in the past.
And they must love you very much.
sometimes, I think we feel guilty for being ill…I know I didnt want to tell people when mine came back…I felt id let the side down by being ill again when other people have their own lives to deal with.
Will your sons feel upset that you didnt tell them? Do you think they would wish to know?
Anyway, whatever you decide, I hope your fears turn out to be unwarranted. If they arent…your sons will cope, they sound pretty robust.
take care and keep us posted if you wish to share,
Moijanxx