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Should they tell us what they know?

35 REPLIES 35
ceegra
Member

Re: Should they tell us what they know?

me niether geraldine,
i went to my gp she thought it might be cancer as i had skin cancer only last year,so i waited 2 weeks went to the breast clinic that i was not very happy with, the doc i couldnt understand,he said something like oh cyst, went for ultra and another foriegner again very dismissive, yes it showed as a black large hole which i sighed with relief, she took out as much fluid black that she could bc nurse said should i send it for histology no need, then she saw the mass was still there and said antibiotics and follow up ultra in 4 weeks

i go this thurs the lump is still there but since she took the fluid out its very nobbly

so nat i,m scared, i shouldnt get cysts at 54yrs and post meno

so we will see but i have a niggle in the pit of my gut

glad yours got sorted and gooed for you to sort them out they sometimes need it, we brits dont complain enough

hugs
cee

Geraldine
Member

Re: Should they tell us what they know?

I was diagnosed with DCIS and invasive BC (more than one area of each) on 1st August last year, after 2 GPs at my practice told me I only had a cyst. I only got a referral to the Breast clinic after I went back and insisted on one. I was n't referred as an urgent case. By the time I got an appointment, I'd found another lump. On the day of my appointment, in 2 hours, i went from being someone who "only had a cyst" to being a cancer patient. When I should have been on my summer holiday last year with my partner, I was having surgery (mastectomy) and waiting for lab results. I had 8 months off work (with the accompanying loss of earnings), 6 cycles of chemo and 15 sessions of rads. I'm taking tamoxifen for the next 5 years. I went back to work in April this year and in May I lodged a formal complaint with the GP practice. I had a meeting with the senior practitioner and the practice manager at which I recieved a full formal apology from the practice, and this was followed up in writing. More importantly, they have changed their procedure and now follow the NICE guidelines on referrals to the breast clinic. Unfortunately this kind of thing happens a lot and I feel a lot of it comes down to money...it costs a practice money to refer patients to consultants. In my case, it would have cost them a lot more if my prognosis had been worse as I would have sued them if only to make sure that my son (who is still at school) was okay in the future. I certainly don't have a great deal of trust in doctors any more.

Geraldine

ceegra
Member

Re: Should they tell us what they know?

oh jax you have been rough hon, i,m so sry you had 20mths of all this, i,m still playing waiting game, so we will see for me, the rad said it was fluid cyst but after the fna it didnt go away so ob its not all fluid

she didnt send the fluid for testing just told to come bk in 4 weeks for a repeat ultra sound, the lump is still there and is nobbly, i think they might do the core this time which is in 1 weeks time

i,m holding out that its a benign lumpy cyst

but i dunno

scared still

love to you all
cee

Jax1961
Member

Re: Should they tell us what they know?

Hi
I found my lump on New Years Eve '05 while getting ready to party, showed hubby then ignored it for a couple of weeks, then I was talking to a friend at work about how incredibly tired I was all the time, I had gotten up at 10 am that day but by 5 while at work, I just wanted to sleep, she said to me that I had been like that a while, funny enough I had just though I was over worked, getting old, age 44..The lump came into my mind, it was so small and seemed insignificant, I actually thought it was a vein, but did now wonder..

I went home, it was Wednesday, I was off work the next day, so on the Thursday I phoned the GP and got an appointment for the Friday..My GP examined me and said"its definitly a lump, I will get you an appointment for hospital" anyway I had a phone call of the receptionist the following Tuesday, to say I had a fax appointment notice at the Drs to pick up immediatly, so I walked around and got the note..My appointment was for the next thursday, in that time the lump was actually showing through my T.shirts, strange I thought..

well I went to the hospital, with hubby in tow, (same consultant as Princess18 I think) Dr said its a ' one stop clinic' so you will be here a few hours but you will know whats what when you leave..I was very calm, I did not even think it was cancer to be honest..He examined me and did minor u/s said he didnt think it was anything to worry about..Phew but will do all the tests anyway..

Had mammo, they couldn't get a proper reading, so sent off to ultra sound...was told all seems real good, thickening maybe but def not anything to worry about...PHEW AGAIN!!

Saw consultant again, well all is looking good, (me big smile,) He said he was going to do a FNB Oh my god what pain, said to go and have a cuppa, for half hour, back for the results..One hour later, in I go, alone, as hubby gone for a ciggy, moments before, and it was Ok wasn't it??

" Is your husband still with you?" "no hes having a ciggy, is there a problem?" " sorry to tell you its cancer"...WHAT??

So I embarked on lumpectomy, 9mm lump so small..WLE nodes clear, Triple Neg, so chemo e-cmf...
started all this treatment February 06 finished Oct 06 Stage 1 grade 2

was feeling sore by my underarm scar around December, felt a small lump like a grain of rice, shocked to say the least, but thought no way!! I just finished aggressive Chemo. appointment first one in the new year..
Saw the same consultant, he was so quiet, did FNB ..we waited and waited, its Cancer Again!! so he sent me for Ultra Sound to check both breasts, the Dr who did the ultra sound, reflected back to previous year and this lump was the same, did not look anything like cancer at all..She said it was worrying as on my U/S she would definitly say NOT CANCER!! she said she would def have sent me home without worrying if she hadnt got the proff off the FNB How scary is that??

So they said I had to have Mast, (Triple Neg Stage1 grade 3) chemo, rads, 'by the book' so had mast had Taxotere had rads and now trying to get back to normal, some two weeks after treatment finished..so very hard.....The last 20 months have been a rollercoster of emotions and upsets and I so hope I am finished with it all now....but keep my fingers crossed..and hopefully when I get a recon I can start to feel like me again! if that is possible..

princess18
Member

Re: Should they tell us what they know?

Hi all,

I think I was just 'lucky' that the breast surgeon at my local hosp where I was diagnosed has a no-nonsense approach when talking to patients. Although I am in the military it was actually a civvie consultant who diagnosed me. He was absolutely lovely but very matter of fact with it!

I wonder whether some Drs try to 'work out' what sort of person we are as to whether they tell us the whole truth and nothing but the truth, or whether they decide to keep certain things from us? I am quite a 'gobby' strong minded person and this usually comes across as soon as people meet me. My onc and research nurse (I'm on the TACT2 trial) always tell me absolutely everything, even down to showing me the full report from my CT and bone scans. They say they do it as they know I am the sort of person who likes to be well informed at all times. I'm quite happy with this but it can be a bit scary if you fancy just sticking your head in the sand sometimes (as I do at times!).

Anyway, enough of all my wittering on! Take care all and enjoy the sunshine,

Kelly
-x-

Molennium
Member

Re: Should they tell us what they know?

I believe in complete honesty, we are adults and ought to be treated thus. As someone I saw on TV a while back said "you can't make bad news good". So it's better to be straight. Otherwise you're not sure what they are saying.

I got told the surgeon could improve my scar. I wondered how he was going to do that without further surgery...

Mole

I had breast cancer, originally misdiagnosed as sclerosing adenosis

snowwhite
Member

Re: Should they tell us what they know?

Hi mammabee and everyone

Mammabee you're fantastic, and so are the others on here - i am one of the wimpy ones someone mentioned, and I see you gutsy ladies telling them what they're doing wrong not telling us straight, and i wish I could have been like that. I am 2 and a half years on from diagnosis, treatment, declared all clear - but I'll NEVER be all clear because I am still reeling from the shock because they kept telling me it would be okay, and it kept not being and the next thing I know I'm mutilated and they certainly didn't prepare me for that, and nor have they dealt with it adequately as aftercare.

In fact there's two issues in this thread: them not being good at diagnosing the under-50s, and them not talking straight. I have only suffered from them not being straightforward. I agree with everyone, they should just say we think it could be cancer and that's what we're testing for. And if they think it very likely is cancer they should say that. And if they think it could go to the m-op they should say that. Everything they said to me all along the line was designed to prevent me worrying, rather than preparing me for the worst, and yet they knew from the start what it might come to and I didn't. They make you feel a fool apart from the rest of it. Like when you're the last one to know your husband's having an affair. Someone needs to tell them it makes it worse not better when they can't face the truth. I try really hard to be like you lovely ladies who react straight away, but it doesn't come naturally to me - I'm practising though.

Princess (Kelly) I was interested in your experience and I am wondering, do you think that's because the military have experience of having to tell people the worst, because they have to tell families their loved one is killed in action, and because they have to tell personnel what their injuries are going to mean to them? Civilian doctors could learn a lot from them and I wish someone would make sure they did.

Anyway girls, carry on the good work and don't let them get away with not dealing straight.

snowwhite

cherub
Member

Re: Should they tell us what they know?

I feel quite sad reading a lot of these postings.

I was diagnosed last October aged 45. I'd found a lump out of the blue one morning and went to see my GP who referred me to the breast clinic for a mammogram. I wasn't unduly worried as I had been examining myself for about 20 years; also there were none of the warning signs on show, in fact you couldn't see the lump at all.

I saw the breast clinic the week after the mammogram and the first doctor I saw said it was a cyst (I was dubious as it didn't feel like fluid). I went for an ultrasound and the female doctor there asked if I had been told what it was. When I said a cyst she replied "it can't be, it's solid and you do know that we can't tell you from this whether it's serious or not". I absolutely hated her tone. I then saw another consultant who took a load of biopsy samples and told me he wasn't sure what he was dealing with and he wanted the lab to take a week to check the samples.

Went back the following week with my husband to be told all was OK, it was a benign fibroid. I told the consultant I would like it removed (I just didn't like it being there) and he agreed as it was quite big - he said if it got any bigger I would be disfigured. I had it taken out as a day patient 3 weeks later.

Imagine the shock I got when I went back to have the dressings taken off the following week. When I got dressed the doctor told me it was a good job the fibroid had been removed as he was sorry to tell me he had found an agressive cancer hidden underneath. As I thought I was just getting the dressings off I had sent my husband for a coffee and they had to get a nurse to find him and bring him in. I had a WLE 3 weeks later and also cancelled the holiday I was booked to go on 5 days after diagnosis as I could not have enjoyed it.

Thankfully I have finished all my chemo and rads now, but am on Herceptin until next spring. I had an oncology clinic appointment today but saw a young woman as I passed the breast clinic who had obviously been given bad news.She had a small baby which one of the nurses was looking after. I couldn't help thinking I would not want to be on the start of that journey again and I was also thankful I don't have children.

ceegra
Member

Re: Should they tell us what they know?

i,m so sry kelly, i pray you will recover from this blasted desease, my love and prayers go with you
i hoefully will know a week thurs my second visit
love
cee

princess18
Member

Re: Should they tell us what they know?

Hi all,

I just caught up with this thread and wanted to add my ten pence worth! Although my experience seems to be quite a bit different from many of you.

I am in the RAF and went to see the nurse at my station medical centre in march after I found a suspicious lump. I was 34 at the time. She agreed there was a lump that needed investigating and booked me in to see the Dr asap.

I saw the doc who then advised she was referring me to the local breast clinic. The medic faxed through the appt request and later that day the consultants secretary rang and booked me in for the following monday.I didn't know I would be going to a 'one-stop shop' but thankfully I'd got my boyfriend to take the day off and come with me anyway.

My appt was at 9.30, when I saw a SHO first who took down some histroy, examined me and advised what would happen next. I then went off for a mammogram. The radiologist then did an U/S and showed me on her 'screen' the areas that she was concerned about. She then drew all over me. I was starting to worry!!!!

I then got whisked in to see the consultant. He did several bopisies and a FNA. Once I'd got dressed again he sat me and OH down and told us the cold hard facts. He did not beat around the bush or 'flower it up'. He simply said he was v.v.v.concerned about the lump and that he would have the provisional test reults back in an hour. So, off we went for a cup of tea, I was in bits, fearing the worst by now. When we went back, thankfully he did not pull any punches. He said it was 99.9% certain that I had bc and if the rest of the results said otherwise he wouldn't believe them. We were left in no doubt whatsoever, at any point, and for that I am grateful.

The staff where I went/go were fantastic. They never hid anything from us and never tried to make out things weren't serious. Although I am young (well, sort of!) I was taken very seriously from the word go and for that I will always be grateful.

I get sad when I read about the horrid experiences that others on here have had.

I wish you all well,

Take care,

Kelly
-x-

ceegra
Member

Re: Should they tell us what they know?

hi Fuschia
i,m so sorry hon i pray your treatment goes well,
i,m yet to find out sweetie, i had a what i was told a fluid cyst had fna no histology sent, refered to go bk 4 weeks later, still have the lump and it is now uneven and the edges not even, i have no pain, i did have an inverted nipple but that popped out about 6 mths ago i didnt think anything of it at the time but that is the breast that has the lump

its just on hearing all the ways it can be missed, i,m still wary

i too am a nurse but general medicine sweetheart, retired due to ill health

i did have a rodent ulcer last year

so i go bk in bout 2 weeks

love to all
cee

Fuschia
Member

Re: Should they tell us what they know?

HI Ceegra,

Yes it did I'm afraid, I am two sessions into chemo.

F
xx

ceegra
Member

Re: Should they tell us what they know?

fusia, did yours turn out to be cancer hon?? i just wondered babe, beano i agree get on with treatment and kids first
then at them babe
love
cee

bestie
Member

Re: Should they tell us what they know?

Thks for your advice Fuschia. Yes Chemo and kids top of the 'to do' list at moment.
Speak soon
Ali
x

Fuschia
Member

Re: Should they tell us what they know?

Hi Ali,

Yes, I do know what you mean about being in the right mood. I have heard stories like this before unfortunately, where GP's have 'sat' on patients, you are not alone by any means, as the other stories in this thread show as well. My advice would be to concentrate on your chemo ( I think you are having that at the moment aren't you?) and when you have the strength and wherewithal then tackle it. I would also advise you to speak to cancerbackup.org.uk, I think they will point you in the right direction as to where to start.

Good luck,
F
xxxx

bestie
Member

Re: Should they tell us what they know?

You know what Fuschia I am waiting for one of my more angry days, then I am writing to the practice manager and PCT too. I need to be in the mood to do the stroppy letter though, know what I mean? Good job you did know the system so well - I am by no means a push over, but you do have some faith in these so called professionals. I worry even more for the people out there who are not pushy or inquisitive and the ones that don't know which questions to ask to demand a straight answer.

Take care - speak soon
Ali
x

Fuschia
Member

Re: Should they tell us what they know?

Hi girls

A lot of these stories are upsetting, but Bestie's particularly so. I hope, in time, Bestie you are able to bring your case to the attention of the PCT re: the delay from your GP.

As you may or may not know, I was/am a nurse specialising in bc, so was pretty alarmed when I felt a firm L breast lump at the age of 36. Got an Onc friend of mine to feel it, who thought it was nothing 'bit of tissue', but who agreed with me to push at my GP to get referred on the two week wait. My GP, who is lovely, did as I asked despite saying 'it doesn't feel like a cancer'. I don't dare to think about what would have happened if I hadn't been au fait with the system and practically demanded to be put on the two week wait at my local hospital.

Fuschia
xxxx

RUITH
Member

Re: Should they tell us what they know?

Hi guys
I had a similar experience. I found out yesterday I had bc (papillary carcinoma grade one invasive). The whole lead up thing was annoying to say the least:

1. I found a lump 8 weeks ago and went to the doc
2. Diagnosis fibroadenoma but put on waiting list for breast clinic
3. 5 weeks later I have blood from nipple so go back to GP
4. GP says not to worry 'these things happen all the time' and gives me antibiotics
5. 2 weeks later get apppintment for breast clinic and have mammogram, ultra sound and core biop
6. Core biopsy reveals inconclusive results but there is a papillary lesion which may (miniscule chance) be malignant so 2 days later have surgery to remove lump
7. ALMOST 2 WEEKS (horrendous) later get results of biopsy and have bc

I think they should take unusual symptoms in younger women more seriously. I felt like a bit of a hyperchondriac on my visits to the GP yet even I knew that bright red blood from one nipple wasn't run of the mill!

Good luck to everyone out there!

Ruith x

muddy
Member

Re: Should they tell us what they know?

Hi all
Just want to add my tuppence worth.
Firstly the two week rule is a joke - I would have waited 7-8 weeks for an urgent appointment in my local hospital (a consultant would decide if the GP referral was urgent and not up to my GP even though he considered it urgent) Messed about for another 3 weeks to another hospital and eventually ended up paying £600 plus pound to be told that I had a grade 3, 23mm cancerous lump. Angry not the word.
Glad I took matters into my own hands. My GP was OK but suggested that its' so rare fro women under 40 to get cancer and you are so healthy - OH yeah - feel there is so much complacency in the system - I had to be so pushy and when I went to my GP initally I suggested paying he said I had more money than sense aand i was being over anxious!!

Still feel I was guided by a higer power to see things through and not be fobbed off!! Feel as a woman you have to trust your instinct and not allow yourself to be told you are an over anxious time waster!!

MuddyXX

ceegra
Member

Re: Should they tell us what they know?

hi all
i,m so glad to hear all your responses, even tho you all have had bad news in the end,
i guess we shoud never take anything for granted and assume nothing, i will hold judgement till i go in 2 weeks
but i fee deep down that this darn lump just aint a cyst, i,m 54yrs and not had periods for over a yr now and i,m told that in your 50s that breast tissue changes and its unlikely to develop cysts

i belived the radiologist when she said cyst, now i,m not sure little things come bk to me of the day and the bc nurse pointed something out to her and she ignored the nurse

your all wonderful and i wish you all well with your treatments

hugs
cee

mammabee
Member

Re: Should they tell us what they know?

Hey ladies, thanks to you all for posts.

So sorry to hear all your awful experiences too. I appreciate that they want to be 100% sure before they tell you anything but they need to also manage your expectations. Telling me it was a cyst in the end turned out to be incorrect but because it a benign condition it's seems ok to mis-diagnose. This can be worse than mis-diasnosing a cancer (for all the opposite reasons). I suppose what I'm trying to say is if they are not sure then maybe it would be better not to speculate AT ALL until they have the facts - they can caveat to high heaven as far as I'm concerned but I'd like to know what the possibilties are then investigate further. Forewarned is forearmed!!

As for being on my own that was the worst part. I'm never going to a hospital on my own again!! They seems to tell you something new everytime don't they?

I agree Bestie, I have heard SO many stories of women under 40 with breast cancer and the two week rule for urgent referral pretty much cuts us out of the running because we are classed as low risk. I waited nearly 3 months for my appointment - I did my bit and went to the GP the day after I found the lump but because I'm 34 - non-urgent, it CAN'T be cancer! Age is no indicator these days.

Kime1 - good luck with your FEC, mine was horrendous week 1 but am on day 8 and I feel pretty normal. Travel bands are good for the nausea but be careful wearing one on you arm if you've had lymph removal - they can be tight.

Stay strong all - I am going to feedback my experience to the BCN and hope that they can get a sentence added in their letter to the effect that same day results are possible.

Alison
x

bestie
Member

Re: Should they tell us what they know?

Dear MammaBee

Blimey....I tried to post a response just after you wrote this....it got lost. So we try again......I am sorry that you had such a crap time, most of it seems v. familiar to me. It makes me mad that so many people don't get the answers they need straight away - sometimes I know people don't want to ask or don't know what to ask, but anyway there is alot of 'unsaid' stuff.
You've got me going now...so I will tell my story, that so far I have not told 'online'.

34 yrs old with 2 children (5 and 1 yrs old).
Went to Dr's March - 06, when pregnant...Go away, just hormones.... Seemed to 'vanish' for a while.
Went again January 07.....(prob 1.5/2cm at this point). Go Away..you have lumpy breasts.
Went back 4 weeks later...Go Away ..you have lumpy breasts.
Went back April.....Oh well you are not gonna be happy until we refer you...put your mind at rest etc etc.
Referred as 'Non-Urgent' with appt 24th May.
24th May..Cons exam, hands on..Oh it's either a cyst or just grissly tissue. Come back in a week 4 ultrasound.

8th June - ultrasound. Oh shit... mammogram follows, core biopsy next...cons says more likely it IS cancer than NOT. Like you and so many others...we went from just a cyst to something else.

14th June - DX, invasive 6cm trip neg cancer. Needs Chemo, then Mast then Rads.

I feel very p***ed off that this has taken such a long time. Interesting to note how many other stories are similar-when will they start to realise it is not so uncommon or less serious in the under 50's.

Ali
x

ceegra
Member

Re: Should they tell us what they know?

hi all now i,m worried, so when i was told it was a fluid cyst and had as much drained as she could yet there still remained a lump, it may turn out to be cancer, i,m 54yrs post menopausle
this this seems to be attaching to the meaty flesh of the breast but cos she didnt send anything off i thought great no need to worry

as soon as i got home i felt again and the lump was still there and the sides are not all smooth

i go again in 2 weeks

oh why wont they do all the tests to put our minds at rest or so we can deal with things

the irony is just over three weeks before i found the lump i felt very despondant a feeling that something bad was going to happen
is it pyschic lol

i,m sorry you gals had to go through that experience like that

my thoughts are with you
cee

tinkers
Member

Re: Should they tell us what they know?

I am waiting for the results of my core biopsy which they did on Wed. From initially seeing the GP no-one has given any indication of anyones' real thoughts (which I agree they must have a reasonable idea) other than they are "concerned" about the mammogram (some distortion - GP could feel something, Cons couldn't - went to GP because breast all pulled in when brushing hair). I had to ask to see the film showing quite a marked distortion. To me it feels like they are playing it "neutral" and I would prefer to know what they are really thinking either way. It may sound odd, but the thing that is really irritating me at the moment is people saying things like "oh, I think it's all going to be OK - I have a good feeling about it" - Of course I sincerely hope that it's OK, and I am not a pessimistic person in any way(I guess I'm playing neutral on it too!) - but - when they say these things in some way it makes me feel guilty about being concerned. Do they think I'm making a fuss? If I listened to them and it isn't good news how will those comments have helped anyone? ...ooh, sorry I am feeling irritated aren't I, and off topic - sorry for the rant!

As an NHS employee I know too well the pressure that we are put under regarding threats of litigation etc and this has resulted in very defensive practice at times. However ,I think I'm quite a mature adult (most of the time!) who could cope with informed discussions and probabilities - surely this is better than leaving people in the dark and not preparing them for their own future.

All the best

Tinkers

nicolam
Member

Re: Should they tell us what they know?

I can absolutely understand where your coming from my sisters cancer returned with secondaries unfortunately her onc had reduced his nhs duties to one hospital in North Staffs. So my sister went to see her new onc who advised a course of chemo which was no cure but is being used in Sweden, but he had no stats on success rates! he was really cagey and kept saying we don't need to discuss this now or i will discuss it at next appointment! All in all he was useless i advised my sister to see our old onc (long story but we are a cancerous pair (luckily i am 8 years in remission). Anyway back to story, we saw Dr Brunt who advised under no doubts the chemo being offered would maybe have shortened her life! And also he is the only onc i know who always lays all cards on the table and never keeps you in the dark.......for gods sake who's life and body is this

Keep you chin up and as said before one day at a time honey x x x x

ForumMember
Member

Re: Should they tell us what they know?

Hi Mammabee

All sounds very familiar to me.
I had my first cyst removed when I was 13rys old!!! And have had cysts (numerous) ever since.
This was another cyst but the cancer was growing within the cyst (Grade 2 size 3mm). I also had needle aspiration, mammogram, scan, core biopsy, and probable diagnosis in a 2 hr period and on my own.
Following 2 lumpectomies and a week later WLE, and node clearance. I commence FEC on 14th Aug.

All the very best
Kim xx

lizziecee
Member

Re: Should they tell us what they know?

Hi Mammabee- I agree entirely that the doctors/radiologists should prepare you for bad news. I had a normal 3 yrly mammo at a travelling van....got recalled a month later to a breast care centre. In the meantime I saw my GP for another problem and asked her to feel my breasts as I couldn't feel a lump in either of them. Neither could she. However, she didn't give my any platitudes about cysts. I am sure Mole is right - I was 58 yrs old and cysts don't usually occur in people my age.

Went for the recall - wow, like being hit by a rock. I had a compression mammogram and when the radiographer put the original mammo up on the screen, and I saw the black lump was spiculated, knew I was in trouble. Told to get dressed and go back into the waiting room where my husband was sat. Nurse came in and asked both of us to go into an ultrasound room, where the Clinical Director of the centre showed us the "mass" on the screen, and did a core biopsy. It went by in a flash. We were then taken into a small private office where we were given tea in china cups! This was on the NHS, so alarm bells really began to ring.

Although the Clinical Director and bc nurse never mentioned cancer, they talked about having a Wide Local Excision, sample node removal and radiotherapy or a mastectomy with no rads. They even had a date for my surgery - when I had been told nothing until that day, jeez didn't even have a palpable lump. We hadn't a clue as to what was happening. I just turned to my husband and said: "What shall I do?" - he said go with the WLE, and if further surgery is required, we will deal with it. He is a scientist, and does not speak unless he has something relevant to say. I am blessed that even though he is now 79 yrs old, his mental faculties are all still there.

In the event he was quite right - don't know if he has second vision, although I suspect it - so I had the WLE and 8 sample nodes removed - 3 were cancerous. So, back a month later for total axillary removal - absolutely horrendousl. Well, my lovely bc nurse did say: "Liz you are not going to sail through this surgery like the WLE". Trust me, she knew what she was taling about.

On the upbeat side, when I was in for my WLE surgery, another young woman of 32 yrs old was in my ward for a double mastectomy - she had a malignant tumour in one breast, but because her mother had died at 34 yrs, she decided to have a bilateral mastectomy with reconstruction as she had two kids under 5 yrs. She was quite an inspiration to me. When I went back for further surgery, she came into the bc ward for a follow up appt with her bc/plastic surgeon , came to my bed, pulled up her jumper, no bra on, and said:"Liz don't you think new breasts are wonderful?" I almost cried with happiness for her....she was so positive and I couldn't see any scars, just pert, young breasts.

So, do what you have to do. Be positive, and don't surround yourself with negative people.
Take all the help that is offered by friends and relatives, and hopefully you will live a long and fulfilling life.
My biggest problem was after having the total axillary removal, when another node was found positive, I was strongly advised to have chemo. This had never been mentioned until after the pathology report of my axillary removal. Came as a big shock.

Take care, hope all goes well,
Liz.

christine123
Member

Re: Should they tell us what they know?

Hi
I went to my GP the day after i found my lump,doctor had a good feel of the lump asked me to put my hands up in the air to see if there was any change to the shape,she told my to go home and forget about it all together as the lump was very smooth meaning its nothing to worry about but she would sent me to the breast clinic just to be on the safe side,it was a few weeks before christmas so i put it to the back of my mind as i've got two children. the hospital rang to make an apointment for four weeks time , i was ok with that after all my GP said it was nothing to worry about they should no.

I went to the apointment by myself also had mammogram and ultra sound test done, the consultant came in the room with three nurses never thought anything at the time untill he asked why i'd come on my own and could i get my husband up to the hospital in the next half hour as he was sorry but it was something to worry about 100% sure its cancer wow i had to sit in the waiting room on my own trying to take it all in. found out after my GP sent off for a urgent apointment as she was sure it was cancer. the thing is if she had told me it looked like cancer instead of the bull i could of gone the same week with my own health care but instead they let me wait four weeks i guess what im saying is if they tell use the turth we can act a lot faster love christine123

Molennium
Member

Re: Should they tell us what they know?

I agree that they should give you the same information they have. Age comes into it, after aged 40 if you have a solid lump it is more likely that you have cancer than if it is a cyst. Ultrasound can tell the difference between solid and liquid filled lumps.

They err on the side of caution until they are sure. But I think at the outset it should be made clear that you may have cancer, and you should be asked what your anxieties are should it be cancer. So at least they'd know pre diagnosis what your preferences are. At the moment it is drip feed.

I was more worried because I was left in the dark and on the day of my diagnosis I was on my own, and listened for half an hour to someone in the cubicle next door having radiotherapy described to them. My appointment was delayed to the end of the surgery so I wouldn't upset any other people waiting, but no-one told me. By the time I was seen I was starving hungry. Also the doctor stood outside the room I was in and explained how the woman inside had a very rare form of cancer. Later on I realised it was me.

Yes there are better ways of finding out. luckily I'd already gone on this site and heard other horror stories so I knew I was not alone.

Mole

Marilynleah
Member

Re: Should they tell us what they know?

When I went to see my GP she was brilliant. She must have had a good idea it was cancer. She asked if I'd told hubby and when I said no she said that I should as I would need his support and that it probably meant surgery and would refer me to breast clinic.
I went with a list of questions and because surgery had been mentioned before diagnosis I'd had time to think on what I wanted and not what was easiest for them. I had Immediate recon at another hospital as they don't do it at mine. If I hadn't been prepared I might have been rushed into just a mastectomy in a daze and still be waitng for a recon.

So yes they should tell you.

Good luck
Marilyn x

mousy
Member

Re: Should they tell us what they know?

It was a little worrying that the doc who did mine at first said it looked like cysts then couldn't manage to drain them (OUCH when she tried) then made out they were probably benign and would take tissue samples to make sure. As well as saying that though, she did point out that the edges of the lumps were not smooth and that was what was worrying her. That was probably my clue, but I was still listening to the "cysts or benign lumps" explanation. When I saw the consultant, I got the impression that anything worse was not terribly likely, was a bit annoyed that it sounded like either way they were not going to be removed and thought that sounded sloppy.

I was supposed to be going back 2 weeks later for the results but got called back a week before that (a bit worrying). In the interim I hadn't been too concerned about it so it was a bit of a shock.

mousy

ceegra
Member

Re: Should they tell us what they know?

i agree hon you should have been told at clinic that day with the final results of grading on the results of the biopsy

i did not have a core biopsy at that time, just drainage which she did not send to histology

i,m just worried why is the lump still there i suppose at some point i will find out on next ultra sound where i have read they may do a core biopsy then

sry that your hear and the bc is there,
fight this blasted desease, a day at a time

my thoughts stay with you
love
cee

lily0
Member

Re: Should they tell us what they know?

Hi ,
I felt EXACTLY the same as you. I was ultrasounded on the wednesday and was not told for definite that it was cancer until the following wednesday. The BC Nurse told me to expect it, but I got the impression that she was not allowed to actually confirm it. I was very angry about this and felt that I should have been told immediately that they suspected cancer. I actually complained to the breast nurse when I was actually told because it was a different doctor and my point was if she could see it was cancer on the ultrasound then the first doctor must have also seen it. I got the impression from the nurse that different doctors operate in different ways so it depends on who you see.
Take care
Katyx

mel999
Member

Re: Should they tell us what they know?

Hi
Your diagnoses day sounds just like mine, but I was lucky I had my older sister with me. 8 days ago I had a drainable cyst, 7 days ago I was told it was Bc - after mammagrams and scans ( Tthey also took 6 core biopsys) 4 days ago I was told that hey were 99% sure that it was precancerous but wanted more biopsys and a lymph node biopsy 3days ago I was told that it was Grade 2 carcenomea invasive breast cancer! I see the oncologist nxt wednesday! I agree that they(drs etc..) do not tell you everything & it does make me angry, but are they doing this so that they have all the facts infront of them first before being 100% sure!
I wish my diagnoses was wrong - but hey lifes a B----ch!

In away i do agree with you
I am taking one day at a time as I get upset when I think of the future.
Take care and keep in touch

Mel

X

ceegra
Member

Re: Should they tell us what they know?

oh sweetie, i,m sry you had this dx i will hold you in my prayers
like you i have been told it was a cyst fluid they drained it but the lump is still there it now feel lumpy and uneven i go bk in 2 weeks for another ultra sound, i just cant get it out of my head that there is something there

so i do agree with you

take one day at a time hon and i,m glad you have support

love
ceegra

mammabee
Member

Should they tell us what they know?

HI all

I'm 34 (with 2 pre-schoolers), new to this website but am 2 months into my new life with cancer. I've already had WLE, node removal and 1st FEC chemo last week. My dx is stage 1,T1 grade 2 lobular invasive with no affected nodes but I wanted to discuss my BEING GIVEN THE NEWS in this forum as I've now had some time to come to terms with it and wondered how you all felt / feel regarding the amount /type of info you have been given.

Having had a cyst before in the opp breast and no family history I had the "Oh it's a most likely another cyst" from my GP.So I went on my own for my appointment being a big brave girl expecting they'd do a biopsy, send it off and I'd hear back in a week or so.

So off I go to the hospital, the doctor examined the lump and said "Clinically it's a cyst. We'll get it scanned and drained". So I get scanned "It's not showing up properly, need to do a mammogram". I get mammogrammed "Take a seat I'll pass these on to the radiologist". Radiologist:"Need to take a needle sample...have a cup of coffee and we'll have your results in half an hour".

Off I pop for a coffee, thought I'd best get a sarnie at the same time, phone hubby "they think it's a cyst, getting results in half an hour. Good hey?!"

Never in a million dreams did I think they would do a scan, mammogram, core biopsy and give me any results within 2 hours. Don't get me wrong I think it's fantastic that they can but I wish it had give me some idea in my appointment letter that it was even possible because I would definitely have had someone with me.
But more than that I wish someone had told me WITHIN the 2 hours that at least they knew it wasn't a cyst. I'm no medic but surely on an ultrasound they know a fluid filled cyst from a solid lump!! I was so angry at being kept in the dark. I am sure it would have been easier to have made the jump from LUMP to Cancerous LUMP rather than CYST (cloud cuckoo land!) to Cancerous Lump.

So much so that when they told me it was cancerous lump I sure as hell wasn't going to give the pitiful doctor the satisfaction of thinking I hadn't guessed it all along. I tried to look as unshocked as possible when in actual fact my perfect world had been ripped apart in 5 seconds.

I suppose what I want to say is I think it's better for the medical staff to prepare you where possible rather than use the so antiquated "Don't tell her anything, she's only the patient, she'll just think the worst" attitude. Because believe me since then my feet haven't touched the ground on this roller-coaster and if I was the clueless feeble patient they had me down as there'd be no hope for me would there!!!

Do you think I've been harsh or do we have a right to know what they know?
Good luck to all you ladies xx