Worried about inflammatory breast cancer

[Sorja]

Newest health scare..

I have had redness on my breasts (one a bit more red than the other), it is sort of a circle around the breast, with more on the outer side. I went to the GP who thought it was a fungal infection or mastitis, but nothing helped. Every time I went to my GP, I expressed concern about inflammatory breast cancer, and they acted like they didn't know what it was, which is not really reassuring.

Eventually, after 2 months of going to the GP, they referred me to the breast clinic. I was told it was going to be 6 weeks, it has now been 6 weeks, I called up the clinic, and they told me it was going to be 15 weeks, because it was a routine appointment. Routine appointment?! I'm terrified worrying about IBC, and they give me a routine appointment?!!

Some reassurance please.. Is there anything I can do? Should I call my GP again? Can I speak to the consultant who made it a routine appointment? I'm worried they won't even know what inflammatory breast cancer is, since the GPs had no clue, but I hope they will, since they are a breast clinic consultant.

What should I do? I'm constantly anxious, it feels like I'm falling.

[Carys]

Yes, call back the GP.

The GPs have the ability to make appointments on the 'two week rule' (according to the directives by NICE) or routine timescale (if they don't think its anything that needs immediate attention). It all depends on how they refer you. Your GP has clearly decided that they don't think it necessary to follow the two week rule - for whatever reason ?! Be honest with yourself here too - is this definitely not an over reaction to a health anxiety issue, and your symptoms are not resolving/getting worse/concerning? If that is the case then yes, this merits being pushed faster. Howver, if your GP thought it was something non-sinister - did they explain what they thought it might be ?

I have never heard of a GP not knowing about IBC, and for that reason I wonder if you should return to another GP in the practice asap and show them what you are experiencing and how frightened you are. 16 weeks is a LONG wait, but it happens when something is categorised as non-urgent unfortunately, depending on how busy the breast clinic are.

If you want more advice you can go to....

breastcancercare.org.uk

They have a forum and a helpline number which could help ?

IBC is a fairly common theme on the health anxiety boards here, you will know it is rare and unlikely to be the reason for your symptoms.

[Sorja]

Thanks for reply.

I saw two different GPs. First they thought it was a skin thing like eczema, so I got steroid cream. Didn't work. Then they thought fungal infection, I tried three different creams, then they thought mastitis, and I got antibiotics. Nothing worked. After that, the GP said that they didn't know what it was, but I got referred to dermatology as well, because it looked like a skin thing. But they offered no alternative suggestion besides fungal infection or mastitis, and it was not that. They have not been concerned at all, and they don't think it's anything sinister.

You just always hear if you have redness on your breasts, get it checked out, and I read that there is not always a lump with IBC, and they couldn't find a lump, and that seems to be the reason they were not concerned, also because it is bilateral made them less concerned.

Will call my GP and be seen by a completely different one.

[Carys]

Well, that is quite a few things you've tried, so its not unreasonable to expect to be seen quicker than 16 weeks. You are quite correct, IBC often has no associated lumps and it is other symptoms like skin changes, redness and swelling (you can find a full list of what to check for on the site I listed) and so on that are the obvious factors. However, the fact that it is bilateral is a good sign, and seeing IBC in both breasts at the same time would be unsual (remember that it is rare anyway), BUT not impossible and has occurred. SO, I think the doctor presuming it couldn't be bilateral isn't that strong a position for them to take. I would agree with you, from what you are saying about the two GP consultations you have had, they seem somewhat clueless to be honest.

I am presuming that the dermatology team didn't offer the IBC suggestion? They would certainly be a team who would know what to look for in that respect.

Unfortunately the only way around this is to get the GP to make a more appropriate referral, the breast clinic team will only make appointments based on the information they have received - as they have no other way to categorise people without seeing them. So, I think go to this new GP and state that you are dissatisfied with a 16 week wait, as nobody has been able to diagnose what is causing your redness and skin changes. Have there been any changes at all in the time you've been messing around with various creams and potions ?

Another option to consider, and its not a fair or good one but if you are having a terrible time struggling against the system, and understandly struggling with your own anxiety - it to ask the GP to refer you now for a private self-funding appointment. IF there was anything following that that needed treatment, and I'm not talking IBC here but anything benign or infection or anything, you can transfer back to the NHS.

I really feel for you about this - you've reported and taken action on symptoms that should be checked, you've done all the right things, you've not immediately panicked. You've gone down other treatment routes and I can see why you are now scared of something more sinister. You need your mind put at rest on this.

[WiseMonkey]

Thanks for reply.

I saw two different GPs. First they thought it was a skin thing like eczema, so I got steroid cream. Didn't work. Then they thought fungal infection, I tried three different creams, then they thought mastitis, and I got antibiotics. Nothing worked. After that, the GP said that they didn't know what it was, but I got referred to dermatology as well, because it looked like a skin thing. But they offered no alternative suggestion besides fungal infection or mastitis, and it was not that. They have not been concerned at all, and they don't think it's anything sinister.

You just always hear if you have redness on your breasts, get it checked out, and I read that there is not always a lump with IBC, and they couldn't find a lump, and that seems to be the reason they were not concerned, also because it is bilateral made them less concerned.

Will call my GP and be seen by a completely different one.

Yes, IBC only presents on one breast (so it's unlikely to be that) and the area can become hot and itchy and raised.
You could have telangiectasia which is a condition in which tiny blood vessels cause threadlike red lines or patterns on the skin. These patterns, or telangiectases, form gradually and often in clusters. Unless they are magnified they just look like a flat red/pinkish area. I have them on mine and they sort of come and go.