My story is that having been told for four weeks that I was perfectly health. I was diagnosed was inflammatory breast cancer stage 2 and after tests told it had spread to the bones. Not bad considering I was told not to worry. As you can imagine there has been times when I have pondered what if I had been more assertive and insisted the hospital make more tests earlier. I have 2 more chemotherapy sessions to go before surgery so my mind is now speculating on what happens next. Why is so little known about IBC
Hi Sunnychair.
I went to doc with a lump and was told by 2 gps that it was just a cyst. When I challenged one after getting diagnosis ( the one I have always trusted) he said " Well I wasn’t sure ,but I hate giving bad news."
There isn’t much to say after that.
I now challenge and complain the minute i’m not happy.
Good luck
Chinook.
Sunnychair - so sorry to read your news. I am looking at the IBC posts because I am apparently under “suspicion” of having IBC and I only found out because the breast clinic sent a letter to my GP and copied me on it. Was quite a shock.
I haven’t read any of your posts before so not sure if you’ve already said, but you mention you are already having chemo so I wondered what your original diagnosis was and why now are they saying it’s IBC that has spread ?
I always thought that IBC treatment involved chemo first anyway, but think the Bone Met posts might give you more advice.
I wish you well with your treatment. xx
Hi ladies
I found a strange mass in my right breast in April 08, I went straight off to the dr who sent me for a mammogram and an ultrasound. The radiographer said it was ok and was “probably” hormonal. Two weeks later I developed bleeding from the nipple, I went back to the dr, was told not to worry as it was nothing suspicious, but she sent me to a breast specialist as the bleeding needed sorting out. I saw the specialist who again said it was nothing serious, he did a swab biopsy of the blood from the nipple which proved negative, he sent me off to see another specialist because I needed an operation to remove the ducts. I saw the final specialist in May, some 6 weeks later who booked me in for surgery to remove the ducts 3 weeks later. During all this time my breast had become extremely large, was hard all around and painful and often felt like the “let down” feeling as in breastfeeding. It was also hot and felt like it was burning.
I went into hospital to have the simple procedure, but later after surgery when the dr came to see me he said it was invasive ductal carcinoma, stage 3. I saw an oncologist a week later who dx IBC and he could see from the mammogram and ultrasound where the mass was.
So like you I was told it was nothing serious, but with IBC they can get it wrong and they do get it wrong all the time. If it is any reassurance to you in all the weeks I was waiting for dx, thankfully it hadn’t spread into the nodes and was contained within the breast with no further complications. I had chemo, surgery then rads along with Herceptin.
Fire away if you have any questions, I don’t post very often on this forum but you can always message me if you have a question.
Good luck
Hi Girls,
I have bumped up another IBC thread - EmsyLou 79 (Emma) is also going through IBC. She has a blog on Facebook which is worth a read.
I’ve bumped up her original posting with her blog details for you.
Hugs to you all
Axx