Would you relax? 
Would you relax? Hi, I’m new here. I found a lump in my breast last June. I’ve been in and out of the breast unit ever since. Mammograms are clear, as are ultrasound scans. 7 sets of biopsies (FNAC and core), all clear. No fibre, no cysts, not cancer, not fibroadenoma, not necrosis from injury, no blocked ducts, no infection, lymph nodes fine, everything ‘looks’ totally normal …
I’ve seen the xrays and scans. There is nothing there. Except there is!
They are stumped. As am I. They’ve put me on Tamoxifen to see if that will work.
I feel bad crashing into a breast cancer forum, when I’m not at all sure it’s legitimate to be here. I hope nobody minds. But I appear to be undiagnosable and I’m at my wits end with this. I’m in severe pain 24 hours a day - like being stabbed every 30 seconds. It came out of nowhere - they are calling it ‘sudden onset’ - one day I was fine, the next day I couldn’t move! But the other breast is perfectly normal. I’m scared.
Has anyone else been in this situation? Does anyone have a clue what might be going on? I’ve seen every surgeon in the hospital - all confirm there is ‘something’, but it’s invisible!
Should I relax, or not? Many thanks …
Susie
Helpline Hi Susie
Welcome to the forums, you sound like you’re having a pretty tough time. If you would like to talk to somone in confidence please telephone BCC’s freefone help line where the trained breast cancer nurses and staff can talk to you in confidence.
The line is open Monday to Friday 9am - 5pm, Saturdays 9am - 2pm and the number to contact is 0808 800 6000.
You have come to the right place for help and support.
Kind regards,
BCC Host
Thanks for your kind words. I’ve been hesitating over calling the helpline.
OK, maybe I will!
I’m pretty low but I think it’s mainly the Tamoxifen doing that. I’m reacting very badly to it - don’t think it’s really ‘me’ talking at all!
I guess with the amount of tests I’ve had, the results are unlikely to be wrong. I just don’t understand how all this happened.
Thanks very much, anyway. I’ll ring them in a bit.
Susie
Hi Susie Have you rung the help line yet? what did they say?
Hope you don’t mind me butting in, but I read what you said about the Tamoxifen ‘talking’ and I remembered something that happened to me when I was on it.
I used to try and get the same brand wherever possible, ask the chemist what one they sell before you hand in the prescription, but once I tried another brand and I have never felt so confused.
From the moment I started taking it I scarcely knew where I was, I found I was doing things like crossing a busy road with no idea of how I had got to the other side.
The brand was Norton, now I’m not saying it would affect everyone the same way but it is worth bearing in mind. No matter what the doctors say, they are not all the same. Some of these companies ‘fill them up’ with all manner of things and these can make a difference.
Anyway, I’m not saying that is what is causing your breast pain or anything like it, but if you’re not feeling yourself in other ways maybe it could make a difference.
Incidently, I did suffer terrible stabbing pains in my previously affected breast and I was advised to take Evening Primrose Oil. You need a good quality high dose, Tesco do a good one, it has 1000mg of E.P.Oil providing GLA of 90mg. Apparently these are the quanties you need. The doctor told me to take two a day but that upset my stomach so I’m down to the one recommended on the tub and it does seem to have helped.
Don’t do this INSTEAD of ringing and getting extra medical help though, will you.
Hope you haven’t fallen asleep yet. I was trying to fit everything in.
I’ll look back here from time to time to see how you are getting on. Do stay in touch.
Love and a hug,
Valerie xxx
Thanks! Valerie, thanks so much for such a long and thoughtful reply. Made me cry. (Everything makes me cry while I’m on Tamoxifen! lol)
I checked the packets. It seems to be generic - just says Tamoxifen, made in Wrexham. No ‘brand name’ that I can see. But I’ll bear your point in mind. I’m only going to be on it for 3 months, so I’m trying to grit my teeth while it turns me into somebody I don’t recognise! I totally know what you mean about crossing the road! I have stopped driving, too, as I don’t trust my reactions. I feel like I don’t really know who I am.
The Tamoxifen isn’t causing the pain, it’s supposed to be fixing it, and making the ‘lump’ go away (it’s not really a lump … more like a diffuse clump or group of cells having a party at my expense …- it’s palpable and about the size of a ping pong ball but doesn’t have defined edges, like a lump). I think, actually, there is some reduction in pain, now I’ve been taking the stuff for 3 weeks.
I’ve been on high dose GLA for several months, and while I like the stuff, it hasn’t helped the pain at all. Unlucky, cos it did sound like the solution at the beginning.
Thank you for welcoming me here. It’s taken a long time to summon up the courage to post. To be honest, I feel a fraud …I have several friends with breast cancer right now, and as you can imagine …
Anyway. Yes, I phoned the helpline and the nurse was absolutely lovely! She’s sending some information through to me. And didn’t seem to mind me crying for most of the conversation! (nice nurse! - thanks!)
Many thanks Valerie, I appreciate the contact.
Susie
wow! I’d like to thank this site, and the wonderful nurse I spoke to yesterday - I just got a parcel through the post with a ton of information, ideas as to what to do next, and a handwritten letter! I’m astounded!
Thanks so much for your support.
I’m still really low but I’m convinced it’s the drugs, not me. Pain is ok at the moment …
When I’ve digested the information, I’ll be back to haunt you!
Many thanks!
Susie
I had all the tests too According to pathology reports I had 7 core biopsies all benign, mammogram showed nothing, breast exam found lump.
I had the lump removed and it did turn out to be breast cancer but of low grade type and with no lymph node involvement.
I had breast pain for 6 years prior to getting the lump, it was in both breasts though and it came and went to some extent. Tamoxifen eradiated all my breast pain but I went off it because of side effects and cost (constant constipation)
I now have breast pain again so I am thinking of going back on it. When my lump was removed they found this accompanying condition called sclerosing adenosis which apparently causes pain. Tamoxifen tends to make the breasts less dense so maybe this is what gets rid of the pain too.
Tamoxifen halves the risk of getting oestrogen receptive breast cancer too so maybe worth taking from that point of view
Mole
Hi Mole, and thanks for the message.
Let me get this straight - you had core biopsies, which came back benign, but they were wrong?!
:(((((
I’m sorry to hear what happened to you. I hope you are ok now?
Best wishes,
Susie
yes all my core biopsies showed nothing so I was rather surprised to be told actually I did have breast cancer and one of such a rare type it was featured on rare tumours website.
Apparently it has the same prognosis as the normal ductal kinds though once you take into account grade, size etc.
And I am still here 3 years later
Mole
Gosh! I’m shocked. I thought after mammo, ultrasound and a ton of biopsies, things were pretty certain not to be malignant (although SOME kind of diagnosis would be nice!).
I’m very glad to see you’re still here! And thanks for taking the time to reply again.
I think I need to take a deep breath, finish the Tamoxifen course and see if the lump(s) are still there. I have another hospital appt in March, when I will have been taking the evil tablets for 3 months.
Someone has suggested I ask for a stereotactic biopsy … but as I understand it, that is guided by ultrasound so it goes to the right part of the lump? The trouble is, my ‘lump’ isn’t visible to ultrasound, so I’m not sure how they could guide the needle.
Right now I can’t face any more tests anyway.
Sorry to clog up the forum. I’m usually quite normal 
Susie x
You’re STILL normal, Susie! March is not so long away now, though it seems like a life time when you’re waiting for it doesn’t it, then all of a sudden it’s too soon :o)
Hello Mole, long time no hear, trust you to have a very rare tumour. Some people just have to be different don’t they? Where have you been? Off on your travels again? Or have I just been missing your posts?
Susie, I hope they manage to get you sorted out this time, as you say, keep taking the tablets. Yes, they are horrible but at least you’ll be able to ‘rule them out’ if nothing else.
We want to hear how you get on at your appointment but don’t keep away till then. Pop over to the ‘chit-chat and fun’ if you just feel like a laugh, hang around in ANY of the forum pages reading other peoples posts or carry on writing your own if that’s what you want to do. There is always someone here and NO-ONE will think you’re being silly for worrying about things. We’ve all been there one way or another.
Take care,
love, Valerie xxx
Thanks! I really appreciate the welcome I’ve had. I will stick around, yes. Off work anyway - so might as well! Can’t think straight and can’t stop crying (tis the drugs, tis NOT ME!).
I’m hanging on to the fact that I’ve seen every specialist in the area, every nurse and every GP! And had a ton of tests. I’m fast turning into the scourge of the NHS!
Now stop being so nice, cos you’re making me cry again!
Hugs to all,
Susie
beware the time stealers! Hi Susie, what happened to March did someone nick it while I was asleep? I can’t believe it will be April next Saturday.
Anyway, there was I promising to find out how you got on in your appointment and then, wham, whole weeks had disappeared.
Sorry about that, have you been yet? How did you get on?
I’m going away tomorrow till Friday so I won’t be around for a few days, good luck if you haven’t been yet!
Speak to you again soon,
Valerie x
Similiar Situation - so interested in your story Susie,
Sorry to come in at what should hopefully be a happy ending for you, however, I am in a similiar situation to you so am eager to find out what happens. I found a lump back in September and had the triple assessment. At which point they prepared me for the worst as they where so suspicious of the results. Then I was told the results had come back as benign and they were 99% happy I was OK, but that they would repeat the tests after my holiday in November if the lump was still there. Duly had second lot of biopsies done and some additional tests as there where too many cells in the sample. Again came back OK, but due to really bad bruising I was asked to leave it 6 months and then go back for a decision on an exision biopsy. I have now brought my appointment forward to 1st May as the lump is definately still there. They think it is the same lump that I had checked out 7 years ago. However, back then I was given the all clear at the time of the triple assessment. Have been told its not a cyst or fibroadenoma and that there is no sign of cancerous or pre-cancerous cells yet, but that they don’t know what it is. I have had periods of being in pain with it similar to yours as well as being pain free. Currently I am aware that if I get stressed or emotional it hurts. It also feels as if it is attached to the muscle and I am now getting pains/soreness in my armpit - a bit like I have been weight lifting (which I haven’t).
I have read of other cases where people are given the all clear only to find cancer when they have the lump removed, so am finding this hard.
Please let me know what has happened to you. I will be keeping my fingers crossed untill you let us know.
Best Wishes, hugs and Love
Jx
Hello … Hello, I’m back (I hope). Thanks for all your good wishes, which I really appreciate.
I’ll respond in a bit, just sorting a few things out here!
love to all,
susie x
Thanks to everyone Hi again, and sorry for the absence. loooooong story
Right. Quick update and will try not to bore you to death. I remain undiagnosed. I am still in severe pain. Have just come off the Tamoxifen which has sort of melted some of the ‘thing’ but not cleared it. So now I’m on my own.
I’ve been given Diclofenac for the pain, and it’s good stuff. Have been expertly fitted at Eloise for some underwear that an armour plated truck won’t be able to shift, and that’s helping reduce the pain too. The breast tissue over and around the breast got into serious trouble too (pain, I mean) so I’m hoping things will ease now.
Had long and difficult time with the consultant again last week. I had to force him to check the lumps for me (I was still scared there might be something nasty in there - being scared is what I do best!). Then a long talk about mastectomy - seems that is all the hospital can now offer me.
I have a million conflicting thoughts on all this … but I’m not thinking straight yet. I’ve spent the last three months in bed, pretty much.
So for now, I wanted to thank you all, and apologise for my absence. This is an amazing site and I so appreciate all the help and support I’ve found here. Thanks to Val for her recent message, and Jeanette - we need to talk some more!
love
susie xx
Millions of Conflicting Thoughts… Hi Susie,
Yes I know just what you mean! I seem to have spent the last 7 months having mental arguements with myself and I still can’t make a decision yet!
Hope you have been managing to enjoy this lovely weather?
Lots of Love
Jxxxx
Hi Jeanette! Nice to see you again!
So what have they told you? All I know is, I have ‘extra cells’ - useful, huh?! I want a name, and a diagnosis!
Is your pain cyclic or not? Mine doesn’t seem to be, although it does get worse and then a bit better again. But it never goes away.
I can’t shake the fear. I think that’s because I don’t know what this thing IS. And I don’t know how far it’s reasonable to go, to find out. They say lumpectomy won’t work, but have offered me mastectomy. Or oophorectomy (or both).
But but but … :((((
May I ask if yours appeared suddenly or gradually? Mine arrived overnight - they are calling it ‘sudden onset’. It did happen in the middle of a bucketload of stress, and they think that’s what might have caused it. But that’s not much use if it can’t be fixed!
susie x
Tamoxifen Hi Susie,
Thanks for sharing how Tamoxifen makes you feel. I’m on the Nolvadex brand, rather than the generic. Been on it for about two weeks and although I’ve not really had any horrific side-effects, I do feel all over the place. People ask me how my day was and I can’t answer, cos I feel like I’m up and down and this and that - can’t even put it into words! Bit scared what the next 5 years will bring!!
Not that my reply is much help to you, but I feel ‘better’ knowing it’s not just me falling apart, and perhaps I can blame it on the Tamoxifen!
Hope the Tamoxifen sorts you out and you get rid of your horrible symptoms. Poor you, it sounds awful.
Jacki xx