strange right breast, very worried and waiting for doctor appointment

[devonshireduckling]

Have namechanged as RL friends will only panic if they see this. For the last 12 months I've had palpitations at night, very low immunity etc but put it down to stress as looking after DCs and caring for terminally ill relative. It is probably unrelated but for the last 2 weeks my right breast has been incredibly sore, getting worse and worse and really a burning pain, it feels a bit lumpy, it doesn't respond to ibuprofen, can't get comfy to sleep. I am definitely not pregnant and period made no difference to this pain. Havent been to the doctors for me, for more than a year, so I have managed to get an appointment for tomorrow. DH is away for work so I am stuck here worrying and thinking the worst, he is too worried to talk about it on the phone. Also feel foolish going in to doctors with a shopping list of decrepitude. So anyone around to hold my hand and tell me some non-awful options before I go to see GP? DCs are in bed so now I am just fretting.

Hi again duckling. Sorry to hear all is not cleared yet. I ended up having 3 ultrasound scans at various points during my first (and worst) infection. I would take great comfort from the fact the antibiotics have had a significant positive effect - though has not got rid of the infection completely. My doctors always referred tothis as a very strong indicator this was not sinister. I know I started to analyse the effect of the drugs, often doubting they had any effect as it really was 2 steps forward and 1.5 step back.
Not sure if you ever BF, but on the ultrasound my docs could see an area of infection behind one of the ducts. They could follow the infection down the duct and by doing a series of scans at different time points they could see the changes.
I never had a biopsy. There was however discussions of cleaning out the duct under a brief general - but in the end that was not necessary!
Has the swelling gone down? If your breast is still infected and inflamed I would imagine an ultrasound is the test you will be given. A mammogram would be very painful in that state (I have one every year, and whilst they are normally mildly uncomfortable I with at the thought with a breast infection).
I know (and I can that from the heart) how tough this is. I could not eat or sleep. Remember the signs are good, this is much more common then we think and it does take along time to heal. On a positive note the breast docs should be able to really attack the infection - they are so not cautious about prescribing the strong drugs.
Best of luck when you go in, do let us know how it goes. Will be thinking of you [hugs]

Hi Oeufman, here I am again like a bad penny! Yes the swelling is down from its worst (but it is still clearly swollen) the pain felt almost completely better for about half a day, but is back and there is more weird feeling in my armpit than before. I suspect strongly that it's an infection and as I've just been repeatedly prescribed quite weak ABs, it's just having a party down there.
The doctor said that I would probably get a mammogram (and ultrasound): I am absolutely not keen as my breast is so tender (I've had to give up bra wearing). Am also dreading a biopsy. I have breast fed, stopped years ago, so wonder if it is some duct having a nostalgic twinge. On the plus side the doctor could see how much pain this was causing and suggested I take whatever I have to, to get through to the appointment.
DH suggested that i should postpone the clinic appointment (but even though it could mess with his NYE plans to get away for a short break, I don't think I want to postpone it as I'm so tired of this).
To make matters more complicated an alternative therapist friend of mine just popped over and said that I should refuse a mammogram as x-rays are damaging. Gah!
Am putting today down to experience and off to mainline camomile tea and wrap presents until I lose consciousness!

Can I just say a load of fecking bollocks to X Rays being damaging?! Yes, they may be if you had loads and loads of them, but they are not damaging as a rule (damage may come from the very faint possiblity that the X Ray would damage a cell's DNA on its way through the body - very unlikely to happen in first place and then very unlikely to actually cause enough damage to cause cell to change even if it does hit cell DNA). You are exposed to more radiation when you fly by air. I cannot believe someone would scaremonger you like that, without actually bothering to read the science behind it. I would advise not talking to aforementioned friend until you have been to clinic!

Well said Haggis!

Well meaning friends, grrr take no notice, duckling.

I'm so sorry its not all cleared up, and I totally understand the stress....breast problems, no matter how 'sure' you are, and no matter how much logic and facts point to something un-sinister, just do do that to us. Personally, I would probably go ahead and take earliest appointment - going on a break with a shed load of stress wouldn't work for me, but then I'm not great at putting things out of my mind especially if they hurt.

Sounds like you need bigger gun antibiotics, I knew someone with inflammatory breast cancer and antibiotics didn't touch it at all - so would second oeufman and your own instincts, and say 'infection not gone' rather than anything worse.

Very gentle hugs from me, on the good side only xxx

thanks haggisfish, I felt very crestfallen after I'd spoken to "friend". The feeling was "well what on earth do you want me to do if I can't have a mammogram!!!". Actually a bit pissed off with them. They know I've been feeling rough for a really long time now so I don't need bad science to add to the mix. I have no idea how damaging x-rays are, have had only one in my whole life when I managed to almost break my wrist climbing trees (not recently!).
Elibean - I agree, I am not good at blocking things out of my mind and I (irrationally) dislike hospitals so much that I could postpone indefinitely if I don't just go ahead with it. I think DH is trying to underplay it. The pain has been coming and going and at the moment I am thinking infection or some weird hormonal issue.
Thanks for good-side-hugs. At the moment DCs like hugging the bad side really hard!

Hi Duckie,
I really do not think they will give you a mammogram (it would be too painful and in these situations the information obtained from an ultrasound can be more valuable), and it is quite unlikely you will have a biopsy as they will be unable to see any lump to biopsy as it really truly sounds and behaves like an infection. Sorry, but do not listen to advice re radiation, sometimes people do not think! I so could have written your messages about 1.5 years ago when I had my first infection, I really thought I would never get rid of it!
During my infections I can actually make out the lobes of my breast and the swelling spreads not just to my armpit but up my neck aswell. My kids seemed to specialize in bumping heads of my sore boob! I had not BF for 2 years when I got my infection, and interestingly it was on my last baby (very traumatic birth) that I got lots of breast infections when feeding.
Do please take the earliest appointment for your own sanity - could your GP not prescribe a strong regime of antibiotics in the meantime? Again I need two very strong but different antibiotics given at maximum dose together for 2-3 weeks to hit my infection on the head (perhaps the GP could ring the breast clinic to get some advice as it is very unfair not to be treating this aggressively).
Please try not to worry going into the breast clinic. In my rather lengthy experience of breast units they tend to be very well run clinics with very compassionate staff who understand how scared you are. It may take a few visits to sort out - but once you have been in once it will no longer be the scary unknown :)
Take care you, be positive remembering all those signs very strongly suggesting this is not sinister! Hugs and , oeufman

hope it goes ok, and sorry friend is causing you more grief

Thanks Oeufman, you can't believe what a comfort that is. I am going to take the earliest possible appointment. My pain also radiates up my neck and into my armpit. The GP has not given me any ABs this time as they're not having the right effect, but has told me to use whatever painkillers work (eg take codeine all the way through, antiinflammatories have no effect). I have not had a temperature (and my breast is swollen but not red) any way through this so I think that's why this GP has opted for the clinic visit. Wish the clinic appointment had come earlier, this breast pain has already messed up two birthday parties and now Christmas, and many nights of no sleep: am absolutely pooped. Have a great Christmas Oeuf

lisad123 thanks! I think that the friend was being helpful

While writing this the DCs have opted to leave one of DH's protein bars outside for father christmas I expect to see a buff man in red and white tomorrow night (though I normally enjoy the mince pie that we traditionally leave out, dammit!).

Happy Christmas Duckling. Hope Santa gets his protein bar off you before heading over our way :), he will need it to get down our chimney! I feel sorry for anyone having Santa after us - as quite frankly he will be sloshed!

My feeling is that the GP is not giving the correct AB regime - no point giving a standard dose it will be useless. I also had no temperature, though I did feel unwell (not sure if that was stress or infection). Strangely reassured to hear it is radiating up your neck - it went right up, spread under jaw - the DH thought I was nuts when I described it.

Hope Xmas goes well, and you will be kept so busy the appointment will seek up on you. Do keep us posted and thinking of you.

Once you get into the specialists they will prescribe the right drugs. I would suggest you keep a copy of the prescription (perhaps photograph it on your phone) so if this happens again you can shoŵ the GP what worked to get rid of this. Before I went through this I would have never believed an infection could be so hard to get rid of. A friend of mine also had this, and again she found it hard to get aggressive enough medication.

Hugs and a nice big from me

Thanks Oeufman - have a great Christmas, Father Christmas has just been here so we're off to bed. I'll let you know what happens next. Yes the pain radiates all down round my back and up under my jaw: very weird indeed.

I have had a breast infection since the third week of October ,am now on forth week of AB's two of these weeks have been at high dose, am wondering if you are not on a high enough dose? also i have been prescribed Augmentin that has something in it to make it more effective. Thankfully i am now seeing improvement with my poor boob!

I also have been to breast clinic and had a mammogram and core biopsy and although i had infection and inflammation neither procedure was painfull ( hope that is some reassurance to you)

thanks so much for that, I am continuing to fake christmas cheer while wondering about Friday's appointment. I really don't think they've given me strong enough antibiotics (and just giving me the same dose over and over has just made me feel tired and hasn't done much to get rid of whatever is happening). On the upside I am compulsively baking and tidying cupboards. I hope your poor boob continues to improve!!

Goodluck for friday devon. I've only just seen your post and wanted to send some reassurance.

Mum was diagnosed with Inflammatory BC Aug 2010. Her boob was red almost like an irritation rash, nothing drastic and her nipple had popped in, very sore to touch, no dimpling at that point. She had only had a mammogram in the April and had been given the all clear so we all felt better when she was perscribed anti Bs for infection. They made absolutely no difference so when the G.P decided to prescribe them again Mum refused (she was 63) and demanded referral to Breast unit. We had googled and already knew what it was. She had a scan of her breast at the clinic and punch biopsy and a FNA? of her lymph nodes which were swollen. She got the diagnosis 10 days later. IBC, HER-2 POS.

Bloody mammograms dont always pick up IBC apparently. They did check hers to see if it had been missed back in April but it hadnt shown up.

Anyway what i'm trying to say in a very long winded way is that we all knew what it was without official diagnosis because the anti Bs made absolutely no difference, at least in your case it does seem to fluctuate. Like others have said its probably a case of not giving the right anti B's. She had no pain anywhere else like you have had either in your jaw and back. I know everyone is different but her pattern of changes seemed to be very common for IBC. I have read reams of pages about it over the last 12 months
Goodluck and i will be thinking of you.

The waiting around was the worst bit for us.
XX

Thanks Cheeky, I'm up in the middle of the night once more, not consciously worrying but it seems to be affecting my sleep nonetheless. I hope that your Mum is completely well.

xx

Thinking of you, Duckling, and glad Friday is closer so that you can get the right ABs and lose both pain and worry

Cheeky, hats off to your Mum for being so pro-active, and to all of you for being well informed - sounds like it saved weeks of faffing around, so important with IBC. I wish her well, and FWIW the lady I knew who had IBC recovered beautifully and only died years and years later from something totally unconnected (heart attack). Its much more treatable than it was.

And to anyone else reading, in case it helps one day, IBC rarely shows up on mammograms - punch biopsy is the best diagnostic. It lies in sheets under the skin, and not in a lump.

Devon- Sorry to hear you arnt sleeping well, it seems to be par for the course when you are waiting around

Mums doing ok now. Her whole treatment plan was back to front compared to normal BC. Chemo/herceptin then mastectomy followed at easter, followed by radio and more herceptin which finished in Nov.

We are all nervous now as she is flying solo. I prefered her being pumped full of drugs because it felt like she was doing something, but now its as though we are waiting for it to come back

Elibean- Thankyou so much for that, i will read your post to Mum. So much negativity linked to IBC in the UK its hard to get past statistics. It doesnt help that not many people have heard of it.

American Institute of Cancer is doing loads of research into this form of BC because its affecting so many younger women over there. Patient Info from the uk and around Europe is being sent to them so they can try and work out why its becoming so much more common. It gives hope to us that someone is doing their best to find a cure and a route to prevention.

Will be crossing everything for you Devon.

Bloody boobs are a worry arnt they.

XX

Cheeky, I can well imagine the flying solo part is the scariest. Hopefully it will get easier in time, with each check-up. Actually, I've just remembered someone else I know of - in the US - who had IBC ten years ago: she is perfectly healthy now. Please tell your Mum about her too! Don't forget, the people who get well rarely bother to post on websites....its all the scary stories one tends to hear. And no, it really doesn't help when no one else has heard of the thing one is dealing with.

thanks Elibean.
Good luck to you and your mum Cheeky. It has been so difficult getting any kind of solid information about all this (and it is generally negative/scaremongering).

Thinking of you on Friday duckie - I know how hard it is as I have being there, came out the other end stronger and with less fear re my boobs then before (have huge issues with my rather hefty bosom as my mum died in my arms from BC when I was 19).
It will be fine - antibiotics have had an effect, await your thread on thrush once they get you going on the correct dose (make sure you get anti-thrush drugs also and take probiotic yogurts).
Many hugs and

oh thrush would be something to look forward to ... (off to order large quantities of natural yogurt and industrial canesten)

I shall let you know how Friday goes. This is certainly an education ... xx

Hi Devon, really hoping its gone well today.
Sorry to see you had another shitty nights sleep
XX

Definitly get the Canestan in ready, am on my third bout of thrush since starting my AB's in October and now have monthly as well!

Hope all goes well on friday, i know how you feel , i was in the same place as you 3 weeks ago.

Take care.

Oh bugger, just realised its Thursday today. Its only taken me till 2pm to work that out!!
Just got back from Tescos convinced it was Friday

Thanks NK and Cheeky. I'm in early on Friday morning so am hoping to get a little bit of sleep tonight.
I'm also confused about what day it is (I blame Christmas and the fact that I have it in my head that NYE is always on a Friday )

Hope its all gone well today.
XX