Yes, I absolutely agree - we cannot help the way we are. Some of us cope better by not knowing - others, like ourselves, are different in that we cannot cope with the "not knowing". I too wish I could walk around in blissful ignorance - but alas it is not so.
I am a registered nurse of 28 years, and more recently a registered midwife, so I have a good idea about medical matters. I am able to read and appraise clinical papers and when I was first diagnosed, I spent day and night on the internet. I also had access to the university medical library. There were many times when I thought " Gosh, I wish I hadn't read that" but afterwards I was able to relax a bit more and deal with the information I'd gleaned.
As I said, it's the not knowing that would drive me to the point of - well almost hysteria. The more information I had, the more I understood about the decision making for treatment and all the options available. I was able to discuss with the surgeon everything about my disease including the pathology reports, of which he gave me copies. This gave me a sense of control over my disease. My Surgeon in Sheffield is fantastic, he has included me in all decision making and spent a great deal of time discussing stats, options and drawing diagrams etc, etc. I am eternally grateful for his kindness, understanding and patience.
Your profile is not visible to me so I am unable to see your details. As you know I too am a lobular BC (no ductal involvement). I spent many months seeing a clinical psychologist as I was living in fear of recurrence.I had had my follow up mammogram in Aug 2008 and received a letter which said "there are no suspicious findings". I was very upset when I read this and realised that this did nothing to reassure me. In fact it made me feel quite angry as there were no suspicious findings on mammogram the year before when I had a 3.5 cm tumour in my breast!!! So how on earth did they expect me to be reassured by this???
Eventually I decided that a risk reducing mastectomy was the only thing that would allay my fears and anxieties. A controversial step I know, but I did wait over a year before I finally came to that decision. My surgeon did not try to put me off as he knew I'd given this a great deal of thought - it wasn't a knee jerk reaction. So I had a left mastectomy in July 2009 (healthy breast on the path report). As soon as I regained conciousness from the op I felt a huge sense of relief and I dont regret my decision at all. The breast is gone and I do not have to worry about a new cancer in that breast. Still I worry about the possibility of recurrence of the original disease and it's only in the last couple of months (after my reconstruction) that I've started to feel hopeful about the future.
Of course now the whole thing is coming back to haunt me again. I dont know if they will discuss any results with me on weds - it's unlikely. My surgeon is away for next couple of weeks. I am thinking of asking for MRI scan as neither am I reassured by ultrasound scan after my visit in 2005 when they completely missed the original tumour!!
Anyway, said lump in neck has got bigger and is now mildly painful when I move my head or open my mouth wide (yawn). So will keep you posted.
Ann if you are not reassured by the mammogram have you considered MRI? Forgive me for asking - how old are you? were you pre or post menopausal at diagnosis? I was pre menopausal at diagnosis and this is one factor that limits the value of the mammogram. This is because the breast tissue is dense and shows up as a white mass on the x ray film. Tumours and microcalcifications also show up white, hence they are not always seen (even when a significant size apparently). After the menopause the breast tissue changes and becomes less dense and it's much easier to assess any changes in the breast tissue. This is why women are not routinely screened before the age of 50 - mammogram is of limited value.
MRI scan is not routinely offered as a screening method - too costly. However you can get this done privately. Look up COBALT APPEAL on google.
An MRI can rule out the presence of cancer to a high degree of certainty, making it an excellent tool for screening in women with dense breasts.
However, breast MRI does have some disadvantages. For example, although it is more sensitive than mammogram, it is also less specific. As a result MRI may have more false positives (up to 30%), which may cause more anxiety, waiting for biopsy results which turn out to be negative. Also it seems pretty pointless using this as screening for mets because once cancer cells are found in distant organs - it can be put into remission but it cannot be cured. It is useful though for picking up local recurrences or new primary tumours much earlier and therefore allowing early treatment.
This is the information that I found about MRI scanning which allowed me to make an informed choice about proceeding with this screening method. As yet I havent done this because I have had bi lateral mastectomies and reconstruction with implants. If my lump turns out to be nothing sinister then I am going to proceed with this on an annual basis. I am saving monthly much like a christmas club for this. My friend will accompany me and we will make a day of it.
Here is a copy of the information I received after emailing UK Radiology about MRI. They put me in touch with The Cobalt Appeal. They are based in Cheltenham so depending where you live it may or may not be feasible to travel. It can cost up to £500 - it's a lot of money I know but when I considered how much I spend insuring this, that and the other - it seemed a reasonable amount to pay for some peace of mind.
Do you offer breast MRI and how much would this cost as a self-pay
I was diagnosed with invasive lobular carcinoma of the right breast
in August 2007. Initially treated with wide local excision followed
by right subcutaneous mastectomy.
The important issue is that due to high breast density the
mammography had poor exclusion value and the tumour was not detected
by this imaging tool. Ultrasound scan was equally limited as it
grossly under estimated the tumour (1.3cm), actual tumour size
(3.5cm). ILC carries a higher risk of developing cancer in the
I am awaiting the results of the first annual follow -up mammogram
but as this is likely to be of little value as a stand alone
screening measure I am not reassured by this conventional imaging.
Thank you for your help with this matter.
Thank you for getting in touch.
MRI would be a good way to screen you.
We dont do these in Hereford as we are not a breast screening centre.
Our local expert is Prof Lyburn in Cheltenham. Look up Cobalt Appeal on google. They charge £218 for a basic scan but if they give contrast it will cost quite a bit more (near £500).
Please mention I recommended them
Dr Paul Grech
Ann, I hope you find this information of some use. It is definitely something to consider if you find that you're not reassured by your mammogram. Risk reducing mastectomy is a big decision and does not eliminate risk completely -it's not for everyone. I found this decision was the right one for me particularly as my mum died of breast cancer 28 years ago. She was just 49 years old.
Good luck with your follow up on the 11th. My very best wishes to you. I will let you know about the monstrous lump in my neck.
Vanessa (AKA Monkey Girl) xxx
Ps sorry about the long post!! I do tend to rattle on a bit.
Monkey Girl - I know what you mean about the bath/shower. That is where I found my lump. My details are on my profile. I am due my first anniversary mammogram on 11th August, but since I also had lobular bc, I am not sure I shall feel reassured, even if the results are clear. At my last check, I was told that the majority of problems are found by the patient, not by mammograms or examinations. This made me nervous, as the ball is back in my court. I was fortunate in that I did actually feel a lump. I think I had a small amount of ductal too, so I am not sure if that is why.
Like you, I like to know everything and scare myself silly with what I find on the internet, whether it's about diet, recurrence, mets, etc, etc. I wish I could just leave it. If I had not read anything and had just listened to what I was told by the medics (nothing much), I would probably be much more relaxed and in blissful ignorance. However, you can't help how you are, can you?
I am so sorry you are having to torture yourself with worries over the lymph node. If the antibiotics don't work, it may be because it is caused by a virus. I know the waiting is horrendous but hang on in there. Please let us know how you get on on Wednesday. I hope you don't then have to wait for the results.
I discovered the lump exactly 1 week ago while showering (I am going to stop showering/bathing -that's how I discovered the breast thickening). Folk will just have to put up with the smell.
It is a cervical lymph node about 6 cm so a significant size. It's not really painful although it did feel tender yesterday probably due to the constant prodding and poking. If I'd had a recent infection e'g sore throat, cough, cold I would not be quite so concerned but the monster just appeared out of the blue and has got bigger.
Saw GP today who was very nice but not concerned at this point. Said lymph nodes can swell for no apparent reason. Sometimes they can swell from a simple scratch but I have nothing that might explain this. He did say that BC mets do not tend to go to cervical lymph glands, more usually seen supraclavicular (around the collar bone). Thing is Ann I cannot stay away from the internet. I am a girl who likes to have all the full facts. Not knowing stuff causes me a great deal of worry and anxiety. Yesterday I found an abstract of a clinical paper which said that BC metastatic lymph nodes in the neck are found in cervical nodes in over 50% of cases, which kind of blows his theory out of the water. He did however say that it was freely mobile and did not feel rough or irregular as might be expected in a metastatic node.
Rang BCN today - she tried to offer reassurance and has scheduled a scan for next weds. In the meantime I have started to take some antibiotics that I've had from my recent reconstructive (they supplied twice the prescribed number which has come in useful).
Really delighted with my reconstruction - but at the moment it's become slightly tainted by all this worry.
I hope you are well. What is your story and are you currently in treatment?
Take care and thanks for asking about me
Monkey G xx
Monkey Girl - On your profile you say "Just discovered a large swollen cervical lymph gland on left side (not BC side)." When was that and what happened. Hopefully, all was well.
Hi all again
I am due to start chemo mid August and yes Kallycat I am dreading that too but with this cancer I am always seeming to predict/accept the worse case scenario so far, so was just knowing I would need chemo and radio as well as surgery. It is quite depressing though thinking about going through that till at least Christmas.
As soon as i have my dates I will try to make some plans and will be booking an appointment with Headstrong- have a look on the site if you haven't seen it already. Taking a pal to Liverpool to have an afternoon out with lunch etc.on the day.
Up again waiting for the next time I can take some painkillers. 😞
Keep smiling and keep in touch
Hi to all Lobular Ladies (and Ductal Ladies too)
I was diagnosed with Invasive Lobular Cancer in Aug 2007 at age 45. I had been referred to the breast clinic more than 2 years earlier (May 2005) with a "thickening". At this time point the mammogram was negative, scan showed a small cyst which they then proceeded to aspirate.
Imagine my surprise when they introduced the needle at a lower point to where I had pointed out the said thickening. Imagine your breast as a clock face. I pointed the thickening out at the 9 o clock position. Radiologist (Consultant) introduced the needle at 8 o clock and aspirated a small amount of fluid.
How I wish I had said at the time that they were in the wrong place, but as I had the Consultant attending me and the needle biopsy was guided by ultrasound scan, I simply thought that this is how they approached the thickening.
Results came back clear and I was sent away after being told that they had not managed to aspirate the cyst to completion. Therefore I might find the cyst increases in size in the future but "Dont worry about it, just pop back to the clinic when you have the time"!!
Thickening never really went away .. but hey why worry it's just a benign cyst. So two years later when I noticed that said cyst felt significantly bigger I had every intention of attending the breast clinic..next week... then the week after ...then the week after that etc. etc. Always there seemed to be something more pressing to attend to, other than a benign cyst, and so my visit was put off and put off until eventually when showering one morning I almost fainted with shock at the increase in size.
Anyway I shot off to the clinic knowing instinctively that this was more than a cyst. Again mammography showed nothing, but scan and core biopsy were carried out and the rest is history.
I was told I had ILC, tumour size 1.3cm on imaging, very very small tumour, very good prognosis. Even at his point I knew the tumour was larger - it felt like a half a boiled egg!!. Still they assured me it was small.
Had WLE - tumour 3 times bigger than imaging tests suggested. Actual tumour size 3.5 cm. Didnt get clear margins so back I went for Mx. Path report said multiple cysts in the breast (as well as ILC)
I read a vast amount of clinical literature about Lobular Cancer of the breast. It is distinctly different from the more common Ducal Cancers and accounts for between 8 -15% of all breast cancers (depending which clinical papers you read). Nevertheless it is treated the same and the literature agrees that the treatment outcomes are the same as for ductal cancers.
The problems lie in diagnosis because Lobular Cancers present as a "thickening" rather than discrete obvious lumps as in Ductal Cancers. Therefore they are often missed on palpation and the imaging tests, particularly if you are pre menopausal. My surgeon told me that Lobular cancers are frequently bigger than imaging tests suggest and I discovered that this is because the cancer cells organise themselves in a different pattern. As one lady points out (sorry cant remember username) lobular cancer cells look like a spiders web under the microscope. I think this is a very good analogy . This is why they are felt as a thickening rather than an obvious "pea like" (or bigger) lump.
All you ladies with a larger tumour than initally thought .. size is indeed not everything. Many large lobular cancers have negative nodes and my surgeon informed me that tumour size is the least important variable in the TNM staging procedure, ie T= tumour size, N = node involvement and M = metastases.
Sincere love to all of you recently diagnosed (it's a tough experience but totally doable)... in fact Sincere love and very best wishes to everyone here.
Monkey Girl ... who is absolutely delighted with her recently reconstructed bamboozles xxxxx
Waiting for my results which I get tomorrow, however just found out that although I was originally told 1.1cm by my breast nurse, it is actually 2.2cm - how could they get it so wrong. My breast nurse is away on holiday and her other half told me. The other thing she said was that there would be 'no surprises' tomorrow as 'we have already spoken to you about chemo and rads'.......
I feel really low - just thought there would be a glimmer of hope about not having chemo as I am so dreading it having heard about the side effects!
Going to a wig lady tonight now.
I was dx with invasive ductal cancer grade 1. Initially only 2cm and no sign of it in nodes. However after WLE ,all nodes removed and 8cm lump! Not enough clearance in one corner so more surgery next week and 2 nodes affected but still grade 1. Like yourself I am "blessed" with 42dd so despite huge lump still big breasted! Swollen with lymph after op and needed a Gcup bra on one side only Oh what the hell!!!
I asked the BN if I would need a mx if clearance no achieved to which she replied,"There is plenty of scope for clearance without mx due to size." All my life I have wanted 36c but seems unlikely at the mo!
Due to have 6 x fec and 15 rads starting Sept once my boys back at school.
This is the best place to find out anything you want to know. So many different stories told and treatments to be had. It is keeping me sane and I'm aiming to be around for a long time yet
All the very best.
The day after mastectomy surgery I put on my wireless bra- I am 42 DD and put in the softie that they give you in hospital. I can't say it was very comfy but it got me home and have worn it for a few short hours since. The trouble is the softies do ride up and my boobs look uneven so my hubby suggested I add a paperweight in the stuffing and it seems to work ok. The softie is better pinned into place too. I have taken to wearing a scarf over the fake boob to detract from the fact that it is higher and more pert than the real droopy one!
I keep missing the painkillers cos I feel ok but then it builds up so I would recommend keep taking them, especially as we bigger boob ladies do need to wear the bra more often!
Hope you won't be in much pain after the surgery- I am a week post op and getting into town and going to Costa for a coffee but still not doing any housework! Hahaha,
Unlike you i had invasive ductal cancer, a small tumor but with a couple of nodes affected, this was at the end of March, i have since had surgery, and 4 FEC chemo, due another 2 then 15 rads then Tamoxifen.
I had a lump biopsied 3 years ago and it was found to be thickening, but like you 3 years later bc was found near the thickening.
My bc was only found because i had had yearly mammograms since i was 40, due to high risk of bc, my mum , grandmother and aunt all had bc before they were 45, my mum had it twice 17 years apart, poor sole.
I never felt the small cancerous lump i had due to the fact that i had extensive thickening and EXTREMELY lumpy breasts, thank goodness for mammograms, i know they do not pick up everything but i am sure glad i have yearly ones.
Now my poor daughters, (one 19 and the other 25) have to endure the traumas of wondering and worrying about bc), bless them.
Sorry i rambled o a bit, must be the drugs! ha ha,
Hi nidavellir, lobular is a sneaky cancer, I had no lump, just a thickening which would not go away and the mammos were clear, the us picked up the two tumours and lobular cancer often presents with larger tumours.
Take pj's with button up/zip up tops, this helps to avoid overhead action, and amoena uk has a good choice of post op front fastening bras.
Take Care and all the best for your op! Tinax
Hi Sallyanne and everyone on this site,
I to have newly diagnosed invasive lobular breast cancer, and an MRI shows a spread of 7.5cms. Mastectomy next monday (26th). I am completely 'head in the sand' about the next bit, as it is such a shock, and a large tumour, but reading these blogs it seems that (as in other things in life), size is not everything.
I am an NHS patient, and am getting copies of all the correspondence from the hospital to my GP, but having had a crash course in breast cancer over the last few weeks, find I am just terrified of even reading the letters; everything looks so much worse in print.
I went three years ago for examination of the lump, but was told it was a thickening of breast tissue, and followed up last year by a negative mammogram, assumed everthing was alright. Who knew that lobular bc doesn't show up on mammagram?
Anyway, at the moment, my needs are practical; please will anyone let me know how soon, and how, I will be able to get dressed after a mastectomy? I usually wear 34G bra, so I really can't go bra-less while everything heals. I gather under-wiring is out of the question. Any and all advice for a 'newbie' will be welcomed.
take care x
I could read your posting all day too.
Love hearing great news - long may it contuine.
Your post is the post l could sit and read all day and all night!! Lol!
Love hearing good news! Well Done!
I was told my tumour was 1cm, probably hormonal and very slow growing. Three weeks later after a lumpectomy I was told it had been 2.5 cm, extremely aggressive,triple neg and so full of vascular invasion I wasn't expected to get through chemo without it returning. I had 4xFEC,4xTAX, six weeks of rads and am coming up for 7yrs ned!
I had my dx in Feb and have recently asked for a copy of my notes, I too have ILC, which tends to be larger, mine was multifocal and altogether >7cm, plus high grade DCIS. As you say, comparisons are not really helpful. Every case is highly individual and your prognosis is a sum of many parts. Take Care, Tina.xx
I too had a larger than originally thought tumour when they operated. I also had lobular bc but strangely was HER2 as well. I have only 2+ years later discovered I also had vascular invasion. It is very common particularly with lobular bc for the tumour to turn out to be larger. As you say lobular is very hard to detect even on mammograms - myself having a mammogram 15 months earlier and it was not detected then. As I understand it lobular shows as a spiders web effect. Not a solid tumour. I question how they can accurately even say the size if that is the case. I had 4 FEC & 4 taxotere & 18 herceptin. Sadly because of spread to lymph nodes I developed lymphoedema.
Hi yes I was in your position, originally told at at Diagnosis my tumour was around 2cm, has lumpectomy and it was 4cm - no clear margins so had masectomy and found another 5cm - my total tumour therefore 9cm (90mm). I was very shocked. however the tumour has been removed and gone so the size of it isn't really the issue, the issue is that as it was so big it was probably there longer or fast growing and its the spread thats the main factor. I did have spread to lymph nodes too 9 our of 24 and had clearence. I am unsure about vasular invasion as I haven't had the courage to ask - I may pluck up courage one day but at the moment I am not ready for this information.
I have had clear scans so at the moment there is no further spread and I have had 3 FEC and 3 Tax, have just had my 2nd Tax, so only one chemo to go. I will have radiotheropy 15 sessions and hormone therapy for 7 years.
I am hoping that all this treatment will do the job and kick the cancer in the butt!!
ps a friend of mine had a tumour of 15cm (yes 150mm) she had chemo first and then Max - she may pop on here and tell your her story!
hello im elaine so sad to hear your news my tumor was 90mm in still on chemo had to do 8 sessions 4 ac and 4 taxatere thought it wud be better for me to shrink it down i had screening last wk its is now 20 mm with 2 sessions to go chemo works for me not pleasnat but doable they say you have to be cruel to be kind or no pain no gain either way its working i hope everything goes gud for you as it is doing 4 me i keep my fingers crossed when i say that keep me posted
I think it is a shock to everyone when they are first dx to find out just how many variables there are with BC, and what a complex disease it is. So it takes a while to find out exactly what is going on with your own cancer, and also quite a bit of research just to know the right questions to ask. Understandably the oncs tend not overload us with information at the start - there's enough to deal with just with the shock of finding out you have cancer. But if my experience is in any way typical, you'll find with each consultation you will want to know more. I was too afraid of the answers at the start - but now I have got used to the idea I can ask the more difficult questions (still don't like the answers though!).
If you feel up to it, I think you can also ask to receive copies of the correspondents between the doctors in your multi-disciplinary team (usually a breast surgeon, oncologist and oncology radiologist). This will details lots of technical stuff that you can then research at your leisure. I was given this option - but I am treated privately - so I guess it's possible it may not be the case on the NHS.
If you feel up to it, I would recommend finding out all you can about your cancer and treatment options - it doesn't do any harm for your onc to know that you are keeping tabs!
Thank you everyone for your helpful advice- it has definitely reassured me. I have rung the helpline being new and spoken to a lovely lady who was really supportive.
I can appreciate now that everyone's situation is different- I was reading the forum posts and worrying that folk were receiving treatment that hasn't been mentioned to me and talking about allsorts that I didn't know about and began to panic feeling that the nurses were keeping things from me etc....
I now can see from your range and depth of experiences that it won't do to compare and that the cancer is as individual as the personalities it attacks.
I have learnt a great deal today. Thank you everyone for taking the time to reply to me today XXXXX Best wishes to all.
I agree with the others that tumour size is often not a useful indicator. My tumour was relatively small - 25mm - but had already spread to my bones. The extent of lymph node involvement and any vascular invasion is probably more significant, together with hormone status and grading.
I can't help you with the op as i haven't had mine yet (11th Aug) but my lump was 60mm by 60mm. I had chemo first to reduce the size, which it has but it has split into a few pieces and covers the same area. i have seen a few posts on here about larger lumps.
I have been concerned too about the size of the lump but my scans were clear also. My lymph nodes look okay but they have said they won't know until they operate. it seems every cancer is different and the size doesn't really indicate how the cancer behaves.
I hope all goes well for you you get some reassurance
Even tiny tumours can spread sadly - my mum's tumour was very small, to the extent that she didn't even feel a lump (her nipple had started to turn in) but it had already spread to several lymph nodes. I had thought that a small tumour meant it must be very early and easy to treat...but sadly it isn't always the case. Wishing you well with your treatment x
Just to agree with melly. My tumour was v little and still had node involvement and vascular invasion. Try not to let it get you down too much. You have a long way to go and need to keep your chin up. Let's hope you have a gentle giant. Dx
Hi sallyann13,sorry you'v had to join us here.There a quite a few women on here who have had large tumours,as moderator has said I am sure they will be here soon to help you.I had quite a small tumour but still had node involvement and lots of vascular invasion, my Breast care nurse said that sometimes you can have a clever little bu--er or you can have a large gentle giant.
Wishing you all the best Mel xx
Hi Sallyann, Sorry you have had to join us, but pleased your operation is out of the way, hope you are feeling ok?
I had to have three ops, lump, wider margin then mx. l also had lymph node involvement, and am almost half way through chemo.
Really pleased your scans were clear, that is always a relief!
As for your question to the size, not something l have looked for, but l do know ladies on here that had a 90mm lump removed, l am sure there will be lots telling you how big their lump was.
I know a lot of the ladies with big lumps sometimes have chemo first to shrink the lump, then have the op.
I will let them explain. Look after yourself
Welcome to the forums. Many of our users have a wealth of experience and I’m sure they will be along to support you soon.
In the meantime you may find it helpful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
with best wishes
Had left mastectomy Monday after first op removed the initial lump which they thought was 30mm but they found it was 60mmx70mm. Friends are trying to say the right thing like "well at least they found it early" but it is obvious now this is quite advanced. All my scans are clear for secondaries but it had spread to my nodes which they took out on Monday too. Are there any folk on here who had a tumour so big successfully removed? I have had a nosey around and I can only find small tumours mentioned on the posts....which is worrying me.
It was an invasive lobular BC which I only ever felt as a thickening and it didn't show up on the mammogram.
Just looking for a bit of reassurance really.