Hello Everyone,
I am new to this forum and wondered if any of you have been in a similar situation to me or know of else anyone who has…
The background is this: completely unaware that I had any kind of lump/problem, I suddenly got woken up a lot one night about three weeks ago with quite bad pain in my breast/s, and so I discovered a lump. I went to my GP who said he was very worried that I had breast cancer. I was referred for the triple assessment tests last week and was basically told in no uncertain terms that I have breast cancer. I had to go back to the hospital the following day for a core biopsy.
The hospital phoned me yesterday to say that they are very surprised to see my results, which are conflicting - and ‘unusual’. The mammograms show breast cancer but the pathology report from the core biopsy shows no breast cancer! The hospital are convinced I have breast cancer…because of the conflicting results, they actually got 5 separate radiologists round a table reviewing my scans, and each one of them said it is breast cancer. How can this be when the pathology report says no breast cancer???
The hospital have warned me not to read good news into this, and are still so convinced it is breast cancer, I now have to have an MRI scan then another biopsy (a slightly different type to a core biopsy I believe).
I just don’t know what to think. And this is all a new field for me ie I don’t know very much about breast cancer, so any views would be welcome!
Thanks for listening…
Alison
Hi Alison - what a worrying time for you. You aren’t alone in having this kind of confusion - several people on here have had the same thing (Freddiecider is one.) The thing is, breast cancer sometimes seems to be quite complicated in the way it presents. The best option for you would probably be to let them treat you for the worst, while you hope for the best.
Hi Alison,
I’ve just read your thread and I have a full understanding of your issue. I ,too have had an odd journey down the BC route. I shall try and be brief in my explanation but I do tend to be long winded at times!
I found my lump about 2 months ago. The doctor was quite concerned so I had an appointment at the BC clinic 2 weeks later. The doctor and consultant had a good prod and feel and were not concerned. They wanted me back in 6 weeks to do and FNA but I insisted that they did one there and then. I waited for the results and was given the all clear. I actually said ’ so I haven’t got BC then’ and they replied ’ no, if we were worried we wouldn’t send you away’. Well two weeks later, I was recalled as somebody had looked again at the results and found ‘suspicious cells’ from the FNA after all. I had mammo and ultrasound both of which were unclear but I was told that I DID now have BC and they wanted to do a punch biopsy just to be sure. I had to wait 2 weeks for those results and to the consultant’s surprise these have come back as ‘suspicious’ but still not absolute!!! So all in all I’m having a WLE to get the lump out tomorrow and we will go from there.The consultant (who is highly thought of and has an excellent reputation) is just as puzzled.What they do know is that the cells are showing atypical hyperplasia which is a pre cancerous condition that often turns into cancer. They think I must have at least DCIS ( aand possibly some invasive) though as atypical hyperplasia does not usually present as a lump.So I know I have pre cancer, probably pre invasive, or possibly invasive !!!GREAT HELP!!
It is awful all this uncertainty. I think from what I can gather it is always the biopsy results that are the final deciding factor. That being said, they cannot always be accurate for a number of reasons the main one being that sometimes the needle might not be put in precisely the right place. I think this is why I had a punch biopsy after the FNA as the punch one gets more cells.
I know how frustrating it is not to be certain.I desperately want to know the kind of BC I have and the grade/stage. I have gradually come to terms with the fact I have BC as I feel that it is unlikely they would tell me I had if I hadn’t.I agree with Susanne- if they treat us for the worst, then at least it can only be better. I can only be sure of anything once the thing is removed.
I wish you the very best in your results and I hope you get some answers quickly. It is now 2 months since I found my lump and at times the waiting has been torturous but with the help of the brilliant advice and support on this website I’ve at least got to my pre op day.
Love Freddiexxxxxxxxxxxxxxx
Hi Freddie.
Thanks for your reply. It’s good to hear of other people in a similar situation, but I am so sorry to hear that all this has been going on for you for two months. How on earth you have lived with the not knowing for so long, I just can’t begin to imagine.
Being recalled after being told you were ok must have been terrible.
I’m sorry, I don’t know what a WLE is (I am new to all this) but I hope it went well and that the results prove negative (and that you don’t have to wait too long for them!!) and then at last you will know where you stand and get get on with your life again. I’m glad your consultant is well thought of and has a good reputation. That must make you feel a little better about things. If you like and trust your consultant, that is a big help.
I am just bewildered. I was told last week that I have breast cancer (largely based on the mammograms I think). This was presented to me as a fact, not something that needed to be confirmed by the core biopsy results. My consultant was even giving me possible surgery dates for April. Now to have some doubt cast on things it is very hard to know how to feel. The hospital were very clear that I should not get my hopes up, and I dare not - if I convince myself I am off the hook then find out for sure that I am not, I don’t how I would cope with it.
I’m glad you’ve found the support from this website so great. I run a support group on Yahoo for a much less serious, but nevertheless life-affecting, gynae issue and if I hadn’t had the incredible support of those people through my darkest times, I don’t know where I’d be today. I always think that as fantastic as the support from family and friends can be, only people going through the same things can truly understand.
Please post with how you got on today as soon as you feel up to it. I am keeping everything crossed for you.
Alison
X
hi Alison - I met a woman when I first went to clinic and was diagnosed - we were chatting as there weren’t many of us left at the end and then she turned up to have surgery the same day as me when I went into the day ward - she had actually had 2 core biopsies which were inconclusive but the cons said he thought there was bc there - she had a lumpectomy and it was, he was right…she like me ended up with chemo and the works so its s good job he stuck to his convictions - for us its the waitng thats the horrible bit, the just not knowing…sorry you’ve had to join us alison but welcome anyway…mary x
Hi
Hope you are okay Alison.
I had my lump out today-WLE is Wide local excision- which is basically an excisional biopsy where they take the whole lump out and not just a little bit. Don’t worry about not knowing the terminlogy. I didn’t (and still don’t)and have been on a very steep learning curve- loads of things seem to have the same names too eg lumpectomy/WLE/excisional biopsy all mean more or less the same thing.
It was actually okay and I’m not feeling too bad at all. In fact I feel much better knowing the lump isn’t there.
As for the two month wait, whilst I was waiting it was awful but I’m living proof that we can get though it somehow.Believe me, a month ago I was all over the place but somehow the time has helped me get my head round things a bit more.
I think you should try and be positive about the fact that your team are being very thorough. It is good that you are having an MRI scan and another biopsy. I know it’s all very stressful and conflicting results are always confusing to deal with. I ,too, went through the bewildered stage- how could they tell me things were fine and then two weeks later change their minds? But in the end, I decided that this didn’t really change things as I knew the lump was there and if it was BC I needed to know and get it sorted.
Thinking of you and stay in touch,
Love Freddie xxxxxxxxxxx
Hi Freddie,
Lovely to hear from you already…I thought you would be absent for a few days. Did you have to have a general anaesthetic for the WLE? I’m glad it wasn’t too bad and you are now minus your lump. I really hope you get your results very soon and will (surely?) at last get a definitive answer.
I got a copy of the letter my consultant wrote to my GP today.(This was written after my triple assessment tests but before my core biopsies.) I have to say, it is the most frightening and depressing thing I have ever read! I think the thing I am most worried about is that the letter notes changes in one of my armpits.
Alison
X
Hi Alison
Hope you are okay. Soory I’ve not replied earlier but I lost this thread.
In actual fact the WLE was okay. Yes, I had a general which has made me a little tired since but okay really.
Reading your results must have been a little scary.Did you ask for a copy or did you get one automatically? Try not to worry about the armpit thing. I think I’m expecting trouble there too as the sonographer in the ultrasound spent ages on my armpit. I’ve had a quick glance over some of my notes and it does mention an enlarged lymph galnd in the arm pit. I am told this could be enlarged for lits of reasons ( I’m hoping). I keep feeling the armpit and comparing it to the other but it seems the same to me so who knows!!!
Have you got dates for your MRI scan know what sort of biopsy you’ll be having next? In the hospital on Weds they called my op an excisional biopsy so maybe you’ll have something similar?
I do hope you are coping alright-for me it was the first couple of weeks that were the hardest and then things got a little easier.
Love Freddie xxxxxxxxxxxxxxxx
Hi Freddie.
How are you doing now? Did you have to have stitches after the WLE? Look after yourself and get as much rest as you can won’t you…
I haven’t got the date/s for the MRI/biopsy yet. I will have to chase them, I was told to do so if I didn’t get a letter this week. I don’t know what sort of biopsy it will be, I will have to ask. I certainly didn’t get the impression it was going to be an inpatient in hospital/general anaesthetic type of thing. Maybe it will be the punch biopsy you have mentioned before.
The consultant very kindly said he would copy me into the letter he wrote my GP (I think he could tell I was too shocked to take in a single word he was saying!), but now I am almost wishing he hadn’t done this! It certainly does make grim reading…‘mammogram looks highly suspicious’, ‘breast cancer highly probable’, ‘very little doubt she will need a mastectomy’ etc etc etc.
When the core biopsy results came back negative, despite the hospital telling me not to get my hopes up and that they still thought it was cancer, and despite me stressing to family and friends not to read good news into this, human nature being what it is, I did, despite my best efforts, allow my hope to grow. This letter has firmly put me back in my place though…
Happy Easter to you Freddie and to everyone else on this wonderful forum.
Alison
X
Hi Alison
I know exactly how bewildered you must feel and how the confusion of the results can really make our minds wander. I go through stages where I am really positive, thinking that there is always a slim chance my results could be benign after all. The next day I can feel the opposite and think I have all kinds of secondaries.Facts, though difficult, can at least be dealt with, but the unknown is harder. I’m sure that when you have the results of the next biopsy you will feel much clearer whatever the outcome is.Then, the pathway forwards should be more manageable. I know seeing the results in black and white must be hard-I can imagine myself reading them over and over again.
On a positive note, at least you seem to be very well informed about what is going on. For me,I haven’t got much of an idea what was shown on the mammo or ultrasound. I could see the red area myself on the ultrsound but the consultant didn’t say much about either of these other than that they were not conclusive. He just said after the triple assessment that they still weren’t clear, but it is most likely BC - 95 % sure , probably lobular cancer but the punch biopsy should confirm it all.I presume theywerebasing the diagnosis on the first suspicious FNA. But then at the next appointment, as I said before , the second biopsy was ‘suspicious’ but not conclusive either.I asked whether he still thought it was lobular and he said definitely not!!So goodness knows what is going on.
The last week has probably been the easiest in my journey so far as at least I’ll know for certain what is going on. I’m very worried that my results won’t be back this Weds as I seem to have rotten luck with timings but at the moment I’m focusing on this Weds.I do have stitches- dissolvable apparantly but I can’t see them anywhere. There is just a very neat line at the side of my boob. Remarkable really- I never thought it would look this good and it hasn’t even healed yet.Although the consultant warned of ‘some disfigurement’ it is alreeady far better than i expected.
I know I’m not a medic or anything but I wonder whether it is possible you could have an WLE too. At least that way, if the whole lump is out the pathologists have got the whole chunk to examine.No if’s or but’s then and all in all the op isn’t too bad. Mind you, the consultant did say to me that it is highly unusual for two biopsies to be inconclusive so maybe I was just the unlucky one.
Please keep chatting- in a way it is comforting to know that others seem to go through a complicated diagnosis journey too.
Enjoy the easter break and try to keep busy!I have to be busy - I’m 37 with two young children so don’t have much chance for a rest though I’m trying to!
Love Freddiexxxxxxxxx
hi alison - was just reading back over your post and wondered if you had your original core biopsy done under mammogram or ultrasound? I was called back for core biopsy under mammo on my “good” side and am sure they called it something different although I can’t be sure as I never had an original core biosy on my bad side just the fna…mary x
Hi Mary,
Thanks for replying. Sorry I didn’t respond to your first message but I was a bit thrown when I first joined this forum that some of the responses had a ‘post a comment’ option under them and some didn’t. (Also with your post Susanne - sorry!) I wondered initially whether people had the option to request no posts to their answer, but now I realise that I was being an airhead and that the option at the bottom of the page applies to all responses made, not just the last one!!
To answer your question Mary - I don’t know! I was in whirl at the core biopsy (having just found out the day before it was probably bad news) and I just shut off and put myself in their hands. I had ultrasound and mammogram done the previous day, and mammogram again on the core biopsy day, so I’m not sure if this means my core biopsy was ‘done under’ mammogram?? One thing I am struggling with, because I am so new to this, is all the terminology and how the whole diagnostic process works etc.
Freddie - I have been following your news in the ‘can’t believe it’ thread. I hope you are ok and I am crossing my fingers like mad that you can get your results this Wednesday. The problem with my lump is that it is quite big in relation to my not-very-big breast, so I don’t know if WLE would be an option. Please keep us informed, I am thinking of you. x
Thanks everyone. Don’t know how I would have been able to get to this point without this forum.
Alison
alison ((((hugs)))) to you - that is sometimes the prob with a small boob and bigger lump - my best friend from school was diagnosed just as I was waiting for my appt with the breast clinic to come through and she had chemo first to shrink her lump and then just last week had a mastectomy and was great the day after. It is a massive worry but I think once you def know whats happeneing it sort of gets easier in a way, I think we feel more in control and feel as if we can do more to keep us well etc…just keep talking…mary x
Hi Alison
I hope you are okay. I can totally understand what you mean about the terminolgy thing- I had no idea about all the complexity of BC. Prior to diagnosis I just thought it was either BC or not- several weeks later I’ve learnt much more. Good idea or not- I spent ages doing research on the internet. I try to look at the bits that seem relevant to me and not jump on too far.I know some people find the internet too scary but I like to be informed. I have always avoided the statistics bits though!! I also bought the Dr Susan Love book- I found this quite useful.The diagnosis bit usually seems to be straightforward to most but I guess we’re the unlucky complex ones.The whirl that you are in will slowly get easier I’m sure. As you’ve followed the ‘can’t believe it thread’ you’ll know what a mess I was in at times but I’m kind of okay now.What I have discovered is how informed those in America seem to be. They seem to know every tiny bit of medical jargon!!!
I appreciate what you mean about the WLE and the size of the lump. I’m a bit confused by all that too. The consultant described my lump as being 2 cm, but I saw some notes that said 3.5 cm.Mind you, it felt enormous to me. I thought that this was quite large and therefore too big to remove with WLE. However there was never any discussion on it really- they seemed to think it would be straightforward. They warned of disfigurement but as far as I can tell even that seems to be minimal at the moment.I think sometimes it must depend on where the lump is maybe??
Just another point to note- the nurse did tell me not to obsess about the size of the lump. Small ones can be more aggressive than big ones, so try not to worry too much about that.
I really hope you are ok and I’m thinking about you. I hope you soon get more clearer answers so that your way forward can be determined,
Love
Freddie xxxxxxxxxxxxx
Hi Guys
Mary - the consultant said he would not recommend chemotherapy/radiotherapy or anything else apart from surgery for me (not 100% sure why - think it is all to do with the relative size of the lump compared to breast). I’m sorry to hear about your friend…that must have been very difficult timing-wise for you.
I hope you are right in that I will feel better once I know for sure one way or another…
Hi Freddie, it’s always nice to hear from you 
I hope you are feeling ok and a bit less tired now after the WLE?
In the past, with other health issues, I have researched them for more hours than I could say, but not in this case, it’s all too frightening/confusing at this point so I am steering clear at the moment!
I really don’t know about the bearing the size of lump has on WLE being achievable. I do know my lump is very central. Was your central? Do things feel different now the lump has been removed or are you too bruised and sore still?
The hospital phoned me today with a cancellation appointment, so my MRI scan is tomorrow. I think I will ring the breast care nurse who has been assigned to me to ask what will happen after that. I’ve got a feeling it will be a) review MRI scans b) (if necessary) send biopsy appt c) assess biopsy results d) summon me for results.
Freddie, do you have an appointment for tomorrow to discuss your results?
Thank you both so much for your concern and interest.
Alison
XX
will be sending out the positive vibes then alison for the mri appt…take care, mary x
ps and you freddie for your appt…x
Hi Alison and Mary
It’s good to hear from you and I’m glad that you are doing okay under the circumstances.
I actually feel better today than I have done in ages. The wound seems to be healing nicely and the tiredness has gone. Mind you, that might change when I get my results later.Typical in my waiting game luck- my appointment isn’t until 4.25 so the day is dragging.I really hope the results will be there- will be so disappointed if I have to wait another week. What is this- looking forward to apppointment thing all about ???
As for my lump etc it was on the outer side so I suppose it was very accessible for them really.I have a long vertical line where the excision was and some slight bruising but ,all in all ,not too bad.I’m hoping that i haven’t got to have nodes removed too as I’ve heard that this can be more painful.
It’s good that your appointment for the MRI scan has come quite quickly, that might help you know more ( hopefully). I think you are right not to research too much if you don’t feel ready.It is much better to research once you know what you’re dealing with. I became an unnecessary expert on lobular cancer for a while. Thing is with me I can’t help myself, especually with a wireless laptop at my side!!
Do take care and fingers crossed that everything can go as well as it possibly can for you
Love Freddie xxxxxxxxxxxxxxxxxx
Alison and Freddie - hope all has gone well today… must admit i didn’t look too far ahead when i was having my treatment last year - just looked up each bit the week before it started…
Theresa x
Hi Alison and Freddie,hope all went well for you today as well.
Alison,my lump was very central and the surgeon cut half way round my areola lifted it back scooped out lump and stitched me back up,can’t even see the scar because of where it was placed,boob has a slight dent in it but really not too bad at all. However, my lump was only 15mm and I do have fairly hefty boobs ,(40e)so am sure that that could have effected the outcome too. Am 7 weeks post op had WLE and SNB and although did have a few probs at start am fine and dandy now on tamoxifen and got my radiotherapy planning next week.
Big hugs
Sandra x
Thank you so much everyone for your positive vibes, good wishes and thoughts. It really means a lot to me (and I am finding it very beneficial) to have this amazing support.
No fireworks today…I had the MRI (found out nothing new) then called in to another part of the hospital to see the Breast Care nurse who has been assigned to me. I asked her about the next step, which is, as I thought: review my MRI results along with the previous test results and make a plan from there (it’s still sounding like another biopsy). This should (surely???) be conclusive. So, they are reviewing my results Monday and will ring me same day with the next step.
Freddie, I hope you got good news today. I have been thinking about you a lot throughout the day - including under the MRI scanner 
- and hope that you will post us when you can. xxx
Alison