Should they tell us what they know?

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1

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

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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

3

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

4

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

5

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

6

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

7

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

8

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

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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

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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.

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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

12

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

13

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

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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

15

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

16

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

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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

18

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

19

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

20

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