Inflammatory breast cancer?

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1

Hello, I’m new on the forum and just need some advice/reassurance.

I’m 39 and had a total hysterectomy and BSO last September due to recurring endometriosis and was feeling really well for the first 3 months or so. I wasnt taking HRT due to the endo, as estrogen can encourage it to grow back so I am just taking dietary supps which are working fine and keeping the hot flushes etc at bay :o)

Last December I found a pea size lump under my right arm, I dont know how long it was there for as I was a bit overweight due to my illness and so quite chubby under my arms.

I did a search on the internet and read various things saying it was probably just a blocked sweat gland or an inflamed lymph gland fighting an infection, I was just recovering from a nasty chest infection and had been on antibiotics so I didnt do anything about it.

I’ve lost half a stone in the last month and about 2 weeks ago I noticed the lump wass still there, its hard but doesnt hurt or move and I’ve had this strange aching under my arm and when my arms are by my side I feel like there’s something under my arm bigger than a pea sized lump but I cant actually feel anything else under there.

I then started getting a hot burning sensation under my arm and down the right side and underneath my breast, it would come and go.

Last weekend it got worse and its there constantly now, it feels like when you get bad sunburn; really hot, tingly burning sensation. I havent got any other symptoms such as redness or nipple discharge but my breast does feel a little swollen and heavy.

I went to see my GP last Wednesday and described all the symptoms and she examined me and felt the lump.

She said the lump is nothing to worry about, she said its some sort of cyst (I cant remember what she called it?), its not a swollen lymph gland.

She felt all round my breast and it was quite tender and I was in some discomfort. I explained to her that the burning sensation has got worse and is under my arm and affecting all of my breast now and I am also getting a very warm sensation, like someone is pouring a warm fluid across my breast (this comes and goes on a regular basis).

She mentioned referring me to a breast clinic and then asked about family history, has anyone had breast cancer or any other type of cancer. My greast aunt (who is 79) has stage 3 cervical cancer with matastasies (?) and is receving palliative care and my grandfather died from cancer when I was little. I dont know about my dad’s side of the family as my parents divorced when I was very young.

After I had explained all that she changed her mind about referring me and said as there’s no history of breast cancer, I havent got a lump or a rash or nipple discharge and because my breast hurts (which she said is a good sign as you dont get breast pain with breast cancer ??) and also my symptoms have come on very quickly she thinks its just an infection which is trying to break to the surface so she’s prescribed me a course of antibiotics (Flucloxacillin) and told me go back next Wednesday if things havent improved and she’ll take it from there, she said one week wont make any difference.

I’ve been taking antibiotics for 5 days now and I havent seen any improvement, in fact the burning and hot breast/under arm has got much worse since Wednesday. I’ve got a horrible dull throbbing pain now under my arm (which is a bit swollen now) and right side of my breast. There’s no discolouration to my breast but it feels really hot and tingly, its keeping me awake at night and its constant now, I cant wear my bra now either as its so uncomfortable. I’ve even tried taking co-codamol and diclofenac to help with the pain and swelling (I’m prescribed these for my endometriosis) and its made no difference.

I’m starting to worry now so I am going to try and get an appointment for tomorrow afternoon or Tuesday.

I’m not one for thinking the worse normally but havintg done a search on my symptoms, inflammatory breast cancer keeps cropping up again and again and I’m worried.

Muffatt

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Hi,

Please do not let your gp fob you off! I had a pea size lump near to the armpit and got it checked out. Doc thought it was fibrodema but couldn’t be 100% so referred me to the breast clinic. Turns out it was the dreaded C. This was in dec07 2 weeks after my 34th birthday.

I didn’t have any symptoms other than not being able to put on weight but had put that down to running after 3 kids. I too have no family history and i as so greatful to the doc who referred me as i would have happily accepted it was nothing if thats what she told me.

i suggest you go back and insist you are referred to the breast clinic to get this examined properly.

regards
sukes

3

Hi Muffatt…

I don’t want to scare you - but I do think your doctor should refer you to the breast clinic.
I was diagnosed with Inflammatory breast cancer last May…
Like you I had a lump in my armpit a couple of month’s earlier. My story then gets slightly complicated as my Mum died and to be honest I went into that grief filled fog where I could have grown 2 heads and i would not have noticed… But I suddenly realised that my breast was hurting and had turned pink…
I went to my GP’s straight away and like you was told it was an infection and given antibiotics - but if anything it got more red and swollen so a week later a second GP took one look and said i needed to go to the breast clinic…

Now having scared you… At the clinic I was seen first by a breast nurse and then by the consultant. They sent me for an ultrasound and biopsys, they were able to give me the result of one type of biopsy immediately and confirm the diagnosis… BUT when I went for the ultrasound the consultant did say the problem could also be caused by a cyst so they do also need to check that out for you…

I will be thinking of you - please go back to your GP and insist they refer you, your gp has probably never even seen a case of IBC… I know I am the first IBC patient in 4 years at my local small hospital…

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Thank you both for replying and for the advice.

Having been on a couple of cancer forums I know that IBC manifests itself in different ways and not everyone gets the pink rash but I do seem to have most of the symptoms.

I think you’re right in that my GP has probably never seen a case of IBC, I’m going to print this thread off and take it with me to show her!

I’ll be as pushy as I need to be (I’m not afraid to put my foot down), I knew she would prescribe antibiotics and I’ve taken them, so in effect thats ruled out an infection so I will demand an urgent referral to my local breast clinic.

I also have private medical insurance and will use it if I have to.

The only thing worrying me is that I wont get an urgent referral, what is the normal time span on getting a first appointment at the breast clinic?

Muffatt x

5

With me the second GP emailed the referal to the breast clinic and I got a phone call off them literally within an hour or so of getting back home from the GP’s surgery…! The appointment was for a couple of days later at the weekly “one-stop” diagnosis clinic, obviously I was lucky that the weekly clinic hadn’t already happened… But your GP should be referring you under the “2 weeks rule” ie you see someone within 2 weeks… I know some people go along and have to come back for later scans etc but my experience so far is that they do seem try and diagnose possible IBC as quickly as possible…

Just one word of warning - if it does turn out to be IBC they would then probably want to check you out for any possible cancer spread - this is automatic for IBC patients so don’t let it scare you too much… I had a week where i had to go for a chest xray, heart evaluation, ct scan, and bone scans (i think that is all of them… lol) By the next week they had the results of all the scans plus the results of my core biopsy to know exactly what type of chemo to start me on…

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Hi Muffat
I didn’t have a lump to start with, just a hard area underneath my breast. I went to the Dr, had a mammogram and ultrasound, none of which showed anything wrong (even a cyst), so my GP put it down to “hormones”. A week later the hardness had started to spread, it felt hot and burning inside and a bit like the feeling when you need to breastfeed, I mean like a let down feeling (don’t know if you have ever breastfed so not sure if you know what I mean). The swollen breast just got bigger and bigger, and I made another appt to go back to the Dr. By the time I got my appt I had started to get bleeding from the nipple. I was then sent to see a breast specialist, who said its nothing serious and booked me in for an operation to remove the milk ducts.

By the time of this op it was 9 weeks from when I had first found the lump/mass and my breast was hugely swollen, hard and painful - although the skin was never red, it did feel hot.

A biopsy was taken, to be found cancerous, and IBC was diagnosed some weeks later after I had started chemo. I was diagnosed with Stage 3 aggressive carcinoma, the mass was more than 8 cms.

So, the point of my tale is please, please insist your Dr sends you urgently! I was mis diagnosed by 4 Drs and a radiologist, I forgive them for this since finding out that IBC is often so difficult to diagnose and not one of the usual types of cancer. You know your own body and something is obviously wrong so don’t listen to the dr who says its nothing.

I hope it is nothing, but get it checked out please, and good luck.

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Thank you again!

I will be demanding an urgent referral and will just have to see what happens.

I’ll let you know how I get on.

Muffatt x

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Muffatt - hope that you have managed to see your gp again today…

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Yes I saw another GP at 9.50 this morning, she examined me but lying down this time and my god was I poked and prodded about, I nearly hit the ceiling at one point it was so painful!

She said she can feel something in my breast and she said she would write to the breast clinic for an appointment and she also gave me a 2nd course of antibiotics in case its an abscess, she took my temperature which was normal.

I asked how long it take to get an appointment and she said about 2 weeks so I told her I have private medical insurance and she said go through that as l’ll be seen in under a week.

So I rang the insurance company when I got home who agreed to the claim, I rang the Dr’s surgery and confirmed I had insurance and this afternoon I got an appointment with a Mr Alan Taylor for Wednesday morning!

They’ll do all the necessary tests, mammogram, ultrasound, biopsies (if needed), I’ll get the results of the scans same day and biopsies a couple of days later.

Thank god for private insurance eh!

Muffatt x

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That’s great news - hopefully you will soon know what is happening either way.

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Hi Muffatt,

Just caught your thread.
I’m an IBC girl too, (dx Oct 2005) and just wanted to add my tuppence worth!

I’m really pleased you have your referral and will be looking out for your post to see how you get on.
Hopefully it won’t be IBC, but if it is there a a few of us creeping out of the woodwork now who will be able to offer advise if you need it.
Thinking of you,
Jackie xxx

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Muffatt

Hope that it is going okay today - thinking of you…

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HI

I saw the consultant this morning, he examined me, felt under both arms and both breasts and the right one is still really tender.

He said he could feel nodules in my right breast but was confident that is was benign and nothing to worry about, he sent me off to have a mammogram and an ultrasound.

Apparently these didnt show anything, no lumps, cysts etc and I’ve been told this is all down to hormones or rather lack of hormones (progesterone and estrogen) because I had my ovaries removed last September and I’m not taking HRT so my body is confused and the result is thickening of my breast?

I dont know why its only affected one breast?

So he’s put me on oil of evening primrose capsules (1000 mg) and told me to come back in 6 weeks. Appsrently this wont kick in for 2-3 weeks so I’ll have to put up with the pain and swelling.

I feel crap at the moment, I’m in so much pain possibly because I’ve been poked and prodded about today but why am I not entirely convinced by his diagnosis?

Muffatt

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Muffatt

I think it in a way it is difficult when the doctors are not able to find anything at all… obviously the best thing from the point of view of putting your mind at rest would have been - there is a cyst, we can treat it… then you would be immediatly reassured all was done…

I hope the primrose oil starts to kick in soon - did he suggest things like ibuporfen to try and help with the swelling and pain…?

15

Hi again Muffatt,

Do you still have the other symptoms you were experiencing prior to the anitbiotics? Did the consultant not feel the lump under your arm or has it gone?

When I read your first post I thought you possibly had an infection and wondered if the antibiotics had helped at all by the time you finished the course.

I hope that the lump/symptoms have cleared but, If you are still experiencing pain, swelling/heat I would get a second opinion.
IBC does not show up on Mammos or ultrasound scans.
Take Care,
Love
Jackie x

16

Hi Jackie

I’ve still got the exact same symptoms which I’ve had for over 3 weeks now and the lump is still there. Things did not improve, not even slightly with the antibiotics.

I’ve started getting a hot tingly area on my back now, the exact opposite of my right breast, it might have nothing to do with it and might just be because my bra is uncomfortable but I’m a 38c and cant go without wearing a bra.

The consultant said the lump is a serbacious cyst and nothing to worry about and all the other symptoms are to do with thickening of the breast/nodulation due to me not taking HRT.

Thing is I’ve lived with stage 3 endometriosis for 3 years and have made friends with other endo patients as well as ladies on a hysterectomy forum (there’s a group of us called September Sparkles because we all had our hysts in September) and some of them have had their ovaries removed too and aren’t taking HRT either and no one else is getting this?

I’m not entirely convinced by his diagnosis BUT he is a very well thought of breast expert in Buckinghamshire and I suppose I’ve got to trust him at least for now? I go back on the 15th April (6 weeks away) and if things havent improved I will ask for a biopsy, I’m paying for this (well my insurance company is) and so if its for my peace of mind they cant object.

I dont want to be too pushy and come across as a neurotic woman!

Muffatt x

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Hi muffatt

Sorry to hear that things are not improving, and we don’t think for one minute that you are neurotic!

Do you have to wait until April? My advice would be to do whatever you can to get it checked asap - just to be on the safe side. If it is IBC then its best to know sooner rather than later.

As I said before, I was NOT diagnosed with cancer after seeing 5 different specialists.

Hope things improve soon, at least with the pain and swelling anyway to relieve your discomfort.

P xx

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Hi Peacock

I’m going to give it a few days and if things dont improve I’ll make an earlier appointment.

Out of interest did you swollen lymph glands? The consultant checked around my collar bone, in my neck and under both arms and said they were normal.

Thanks again

Muffatt x

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Hi again,

Golly I totally understand your hesitation in questionning a respected specialist. I do feel if we start to question everything, who can we place our trust in? That said, mistakes do occasionally happen and if I’ve learnt anything since being dx with IBC it’s that YOU have to be proactive because the NHS is reactive.

I am going to be really honest with you.

If your symptoms have not improved in any way, PLEASE, PLEASE do go back sooner as Peacock has suggested. We really are not trying to frighten you, though it amy seem as though we are over dramatising things, but rather we speak from experience. IBC is very aggressive and sneaky. A core biopsy is the only way to rule it out. You are definetly not neurotic, you are being sensible and need to feel reassured and confident with the information given to you.

I had a hysterectomy 12 years ago, but retained my ovaries. I am now post menopausal due to various chemos but have never had the thickening in my remaining breast you describe. Doesn’t mean it doesn’t happen of course.

Regarding the lymph nodes. I had some swelling under my arm,I couldn’t feel it but the onc could. Luckily the chemo worked well in this area.

I really hope you get yourself checked sooner rather than later and that all tests are negative.

Thinking of you,
Love
Jackie x

20

Hi all

I just thought I’d update you all on things.

I’ve been taking oil of evening primrose capsules (1000mg) for 2 weeks now and I am also back on the HRT (Tibolone) and things have not improved. I still have this burning feeling in my right breast and I’m still getting this hot sensation across my breast which comes and goes. Wearing a bra is still uncomfortable. It’s not swollen or discoloured?

One thing that has changed is the small hard lump under my arm, its changing; its doubled in size and now feels soft and sore to touch. I dont know if this is a result of the oil of evening primrose capsules and HRT? It’s also visible when I lift my arm up which it wasnt before.

I know I should go back and see the consultant but I’m having a rotten time at home at the moment as I’m having problems with my husband and he’s moved out temporarily :o(

I dont want to tell him about this because I dont want him thinking that I’m doing this to get his attention.

I’m just feeling frightened and vulnerable at the moment as I have no one to talk to other than a Relate counsellor, I havent even told my friends and family about my marriage problems.

Muffatt x