Inflammatory Breast Cancer?

I did a search on this and read a few older threads relating to IBC, but I have a particular question that is concerning me in relation to my mum’s cancer. I hope I am posting this in the right category.

Long story short: my mum found a lump in her breast early September around the time she was due a routine mammogram. She went in, and two weeks later received an “all clear” notification, but still felt uneasy, as the lump was still there and was tender. She went to her GP, who told her that as it was painful and the mammogram was clear, it was nothing to worry about and to come back in 6 weeks. A few weeks passed and the lump suddenly grew extremely quickly and became very sore. No nipple discharge or changes in skin texture, but the area was slightly red. She went to see another GP who was extremely concerned and rushed her in for a biospy. A week after that she was diagnosed with breast cancer, and it transpired that a lump had been visible on the original mammogram from September, but it was somehow “missed”.

My mum has since been dealing with a consultant who seems to be very experienced. She has decided that she will deal better with BC if she doesn’t know all the details, so she has asked him only to tell her things on a “need to know” basis, so all we know is that the lump was very large and quite deep in the chest cavity, and that it was very aggressive. She had a mastectomy and 3 lymph nodes tested, one of which was suspicious, so she had a follow-up operation four days after the mastectomy and fortunately the lymph nodes were clear. She also had a CT scan which came back clear.

However, she now has considerable tenderness in the other breast. There is no lump, and for this reason her consultant has completely dismissed her concerns over this new development. He has suggested that often after a cancer diagnosis many people immediately assume every ache, pain, lump or bump may be related (which I am sure is true, but I am still worried). He told her to contact someone if she found a lump. My mum doesn’t know about IBC, I only found out about it when I told a friend my mum might have BC, and they said, “God, I hope it isn’t that really rare, super aggressive one that’s painful!!” So I then scared yself STUPID with internet searches about IBC (which I have since read on older threads on here are often full of out-dated information) due to my mum’s original lump being so painful… it was so painful that her second mammogram was practically impossible. My mum is pretty tough and doesn’t usually complain about pain, so for her to struggle so much she must have really been in pain.

My dilemma, really, is that I want to somehow insist that my mum gets her other breast checked out without freaking her out by telling her about IBC. She is obviously concerned, too, but the consultant’s disinterest is making her worry she will be perceived as a hypochondriac if she keeps trying to follow it up.

As IBC can be present without the presence of a lump, can it be picked up by conventional scan methods, such as a CT scan? How do they test for it and determine it is there? And can anyone advise me as to what to do as regards telling my mum to go and see someone without frightening her? She has had so much to deal with over the last month (and is due to start chemotherapy followed by radiotherapy in about two weeks) that I really don’t want to add to the general unpleasantness of life at the moment.

Thank you for any advice you can give me.

-Tamsin

Hi Tamsin

I am sorry to read that you are feeling so worried about your Mum and would like to suggest that you may find it helpful to call our helpline on 0808 800 6000. Our helpliners will be able to offer you support, information and advice to help you with the difficult decisions you are trying to make. The line opens at 9am-5pm Mon-Fri and Sat 9am-2pm.

Best wishes
Lucy

II wouldn’t assume your mother has inflammatory breast cancer as it is quite rare. Other breast conditions cause pain e.g. sclerosing adenosis which I was diagnosed with. In fact my painful lump was also cancerous but it was low grade. some conditions can appear to be benign but do turn out to be something different. That was the case with mine which was misdiagnosed for six months despite having all the biopsies etc. I only found out once the lump was out. I am still around four years later.

hi my breast was extremely painful prior to diognosis. i went to see the consultant and he said that the fluid hed taken didnt show any cancer and to come back if i wasnt happy, well of course i wasnt happy as i still had terrible pain and puckering in my breast ,when i went back i had a scan on my breast and was told i probably had suspiscious tissue changes and had a biopsy done , well i had lobular cancer and had a mastectomy, it didnt show up on a mamogam as it was in the milk ducts, follow your instincts every ache isnt cancer but it will put your mnd at rest to find out. im getting all sorts of pains and have a few lumps that are going to be investigated next time i see the oncologist. its our bodies and we know them better than anyone else. hopefully your mums fears will be groundless /heres whishing you both peace . love lynn xx

Hello Tamsin,

I’m an IBC girl.

IBC doesn’t present as a lump.
The cancer cells attack the lymph vessels in the layers of the breast tissue.

You’ve obviously done some research and know how aggressive IBC is, however, you also say that your Mum’s onc is very experienced, and if there was any indication of IBC previously it will be in her notes, even if she is unaware. It is still quite rare and tends to be found in pre menopausal women (without wishing to sound rude as I don’t know your Mums age).

Mammos/ultrasounds do not show IBC, you need a biopsy to dx.
As your Mum is having further treatment she will be seen in clinic regularly, the tenderness in her breast could well be hormonal. Maybe you could attend clinic with her and speak to the oncologist yourself (if she agrees), hopefully he can reassure you.

You sound like a lovely caring daughter, I wish your Mum well with her next round of treatment.

Love
Mabel xx