Should they tell us what they know?

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21

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

22

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

23

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

24

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

25

HI Ceegra,

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

F
xx

26

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

27

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-

28

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

29

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.

30

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

31

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

32

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-

33

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…

34

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

35

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

36

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