Would you rather know or not know?

Hi all - a question for you.

I was diagnosed with DCIS in the upper outer quadrant, but said I didn’t want surgery because I couldn’t see why if it might never become invasive. I asked lots of questions. I was told that the biopsy etc. didn’t show everything and there could be an invasive cancer in there. So I agreed to have the surgery. I thought it would be a tiny lumpectomy because the suspicious area was so small on the mammogram; they said it would need to be a quadrantectomy to get clear margins because of the nature of DCIS. I was told about the possibility of radiotherapy. I asked lots of questions. They said “Either this op will be successful, or the margins may not be clear and we will need to do a further op to take a little more tissue.” I had the op, and went back for the results, overjoyed that the wound was healing nicely and the result was cosmetically better than I feared, concerned that a further excision would ruin that, pleased at least that my breast would be conserved.

They told me there were indeed 5 tiny invasive bits within the DCIS; but also, the DCIS went to the margins in many places so I needed - not a further excision, but a mastectomy.

I tried to find the thoughts, “You said…You didn’t tell me this could happen after the op. I thought you had told me everything that could happen. Why didn’t you tell me everything that could happen? God knows I asked enough questions.” But I couldn’t find those thoughts - only the thought of the m-op…To say I was terribly shocked is understatement…

Almost 4 years later, when the shock had subsided enough for me to find those thoughts, and transformed into rage, I went back to the surgeon to say those things. Unfortunately, I was excessively deferential, and talked about too many other things with him, so this particular one - my most burning question - merged in with the rest and he did not see how distressed I still am. His answer anyway was: “In only 5% of cases presenting like that does it go to mastectomy and I would not cause unnecessary anxiety in 95% by mentioning this.”

I feel this is very very wrong. He does not know beforehand which ones will need that op. but he does know some will. He knows what will happen to some of these women but he does not tell them. He does not tell them “to prevent unnecessary anxiety.” He had already told me I had cancer, he had already told me I could die, which I already knew. What stopped him telling me this? Surely it is wrong to presume that women would prefer not to know about this possibility because they would worry about it? I didn’t worry because I thought I’d been told the worst case scenario, so I was the opposite of worried - I was overjoyed to have avoided mastectomy. Then - he told me that. Surely you would want to be forewarned - wouldn’t you? Or would you rather find out like I did - being hit by a demolition ball?

Were you told, or not told?

Views please!

sno

Hi Sno,

I would rather be forewarned!! I fully appreciate the shock and rage you felt / still feel. I was desperate to avoid a mx; I had neo-adjuvent chemo which shrank the tumour and my surgeon assured me that I could have a lumpectomy - a mx wasn’t necessary.I was overjoyed! The surgeon mentioned in passing that he would need to get clear margins but he seemed really confident that the chemo had done a great job. I feel that I would have coped better psychologically if I’d been warned that this might not be the case. I had the lumpectomy and like you I was pleased with the result,you would hardly know it had been done once it had healed. Well,it never really had the chance to heal as ten days after the first op I was told that they didn’t get clear margins and I would have to have the ******* mx after all. In a way it was harder to come to terms with as my wish had been granted and then snatched away again. At least they did try to conserve my breast but now I have two scars with horrible wrinkly skin in the middle (they wouldn’t do an immediate recon and at the moment I don’t know if it will ever be possible due to a regional recurrence). Personally I would rather be given the worst case scenario, so at least if the demolition ball swings maybe you can be better prepared for it.

Best wishes. LR

Doctors do this all the time. They dole out pills, plan surgery, carry out treatment etc without filling patients in on all the risks and side effects. Why? I guess because of many reasons, including time constraints, assumption that the patient won’t understand, not wanting to cause anxiety (as your doctor did) etc etc. It is so wrong. Those of us who want the answers are running around trying to cobble together information to make sense of everything and to try and come to a reasoned decision about our treatment. I accept that there are those who don’t want to know or completely have faith in their doctors but that isn’t a strong enough arguement for doctors to behave in such a paternalistic manner to withold vital information. Any treatment should be a joint decision based on informed consent. Clearly, you didn’t get informed and have every reason to be livid.

On diagnosis my first question was “Will i lose my breast?” and the surgeon was so dismissive, as if i was dramatising the seriousness of the situation. And yes, just a few weeks later I’m told i will lose my breast but it’s okay because I’m lucky and I’ll get a reconstruction. And I am told the surgeon does a marvellous job. And i am suitably grateful. And i’m later told i won’t need chemo but of course it turns out i do. And they keep saying it all gets better with time.

And it doesn’t.

I’d rather just have the truth, warts and all because i no longer trust any of the “team”. I decided not to go to the follow up appointments because i feel so angry and upset.

Jane x

I am glad to hear that - he made me feel guilty about wanting to be told. By saying he would not contemplate telling people in my situation because only 5% go on to have the op, he made me feel I was asking him to make all those other women distraught worrying that they might have to have the m-op and then find their results were good and they didn’t need it. I felt I was being selfish and thoughtless. But since everyone in that position might need the op, it seems they need to know they might - and for two weeks while they await results they will be anxious, and then most will be relieved to find their margins clear.

I could put the question the other way I suppose: if you had been told about the possibility of involved margins & needing mastectomy, and then went back for results and found your margins clear and no need for that operation, would you have blamed the doctor for telling you you might have needed it and causing worry about it while you waited for results?

sno

I feel more anxious if I think people are trying to hide things from me. i have absolutely no time for doctors. I also decided not to go for follow up appointments as I don’t believe a word they say so I wouldn’t be reassured if they told me there was nothing to worry about. Why should they tell me what I should worry about? It’s none of their business.

Mole

Both my son and I have huge issues about ‘sugaring the pill’. His fiancee was 28 when diagnosed with a large grade 3 triple negative tumour and was told the bare minimum all the way along. He is a radiographer and during consultations had to ask the medics to talk to her and not assume that she was as knowledgeable as as him. It was rather a shock when she woke up with no breast and no reconstruction, because her nodes were in such a mess it wasn’t possible to remove them and do the back flap thing (sorry). Every problem she encountered thereafter was played down, so every scan result was even worse than they had prepared themselves for. It was only when she was referred to the Royal Marsden that someone there finally had the decency to tell her she was not curable.

In the meantime I was told my tumour found on routine mammogram was ‘probably a cyst’ and then that it was ‘a few rogue cells’ that a quick op and a few RT sessions would fix - this was before surgery, when nothing’s certain. My friend was told the same - she had node involvement and had to have chemo, neither of which she was remotely prepared for. I was luckier - nodes clear - but my few rogue cells were in fact 1.8 cm of rogue cells with only 1mm clearance, which I have to live with as it was too close to the chest wall to take any more.

I’d asked for a mastectomy but was discouraged as the tumour was ‘only 1cm’ and would be fixed with surgery and rads and the outcome would be the same. Well hopefully it was, but no-one warned me I might get an infected haematoma which would double the recommended time between surgery and rads.

All the hospital staff are great - I really mean that. They are caring people, easy to talk to and more available than most. Three different consultants were treating my son’s finacee, my husband and me at the same time and they were all aware of that. All our files had yellow stickers explaining that we were from the same family (even though we weren’t, strictly speaking). But we do have this issue with two of them. Some people can’t cope with too much information at once, but at each stage I think you should know the score, because it doesn’t help anyone not to be prepared.

highball, what an awful story, and with your son a radiographer and them still treating your daughter in law like that - you sort of expect it would be easier for someone who knows their way around the system, but clearly not.

I would be interested to know how people feel after these sort of failures - my reaction has been rage, because in the medical setting above any other you expect the whole plain truth; you trust them with your life, and put yourself in their hands. At their mercy, in effect. So the let down, it seems to me, when they fail, is huge.

I would be more than willing to forgive simple human errors, especially if the person just owns up and says sorry - god knows I’m not quite perfect myself - but some of these things, such as you ladies describe, are more serious than that because they are about people arrogating to themselves our decisions, and because they don’t accept that what they do causes huge distress. I find that very hard to accept because not only are they doing it once, they are doing it every time.

sno

Well sno after all our experiences we’ve learned to put my own take on whatever’s said and above all to assume nothing. I don’t necessarily expect the worst of every scenario, but I’m not impressed by ‘good’ statistics either. They’re useful for doctors to decide what treatment might be appropriate, but no-one can tell you what will happen to you. This playing down happened again recently when I had a bone scan - the hot spot on my spine would be wear and tear and not to worry. Well I’m glad to say it was wear and tear, but actually you don’t know that until you’ve had the scan! And I didn’t mention that my husband was declared ‘benign’ (by his previous consultant) after his first biopsy but no-one told us they are only 60% accurate. Three months later when tested again he speedily went from ‘benign’ to ‘incurable’. Not helpful when you’ve told your worried children their Dad is fine. I know it’s a waste of energy getting upset about it, but I did and I do.

highball that is appalling, I feel red mist rising just reading about it - you are incredibly solid and foursquare dealing with it the way you are.

I have been knocked wobbly. I used to be, think I was, a pretty tough person who did not get agitated about things, people have always told me I seem to be a calm person when all around are getting het up about something, but I have lost that, lost my balance … I now even worry that something else will go wrong when it hasn’t, which has never been my way, because I don’t think I could take anything else happening in my life now.

I think I have been incredibly, unbelievably naive. I expected them to tell me the truth. I believed what they told me. I expected them to be straight with me. I expected them to tell me what I needed to know. I could not have so much as imagined that they would not. I always always bend over backwards to tell people what I believe they need to know; my mother in law, whose memory has gone, recently had to have a procedure, and everyone was talking over her head and behind her back, I was the only one who thought she had a right to be told even though she would forget - she is capable of understanding in the moment, and of having a viewpoint, although it all goes a few minutes later, and I really tried very hard to tell her softly what it was all about with no pulled punches, and she did not get upset or distressed, she was wanting to know and getting agitated when she couldn’t control everyone else going over her head. I feel that is exactly the way they treated me and I do not know how they could have done it and how they could respect themselves when they treat people that way.

Anyway, I don’t see anyone coming on here saying they would really rather not know.

sno

Well exactly! And an extension of all this is, your family has a right to know too. To be honest my biggest dread is having to tell my family yet more bad news. They’ve had so much to cope with the last few years that I didn’t mention the bone scan to my (grown up)sons until after I got the results. To put it mildly, they were somewhat dis-chuffed about not being kept informed! What would I think if they’d had to have a scan and didn’t tell me? They’re right - I didn’t want to worry them for nothing, but I was just as guilty as the medics because my sons surely know sh*t happens by now, and it’s not for me to decide what they can and can’t cope with. You think you have to be strong for everybody, but there’s some things you just can’t protect them from. (Your mother-in-law is very lucky to have a daughter-in-law like you!)

Well it is very interesting to see your son’s reaction - it is a huge issue working out how much, and how to tell the family - and it is a very very hard thing to do. I just feel that keeping them posted as events progress is best because otherwise, should something nasty transpire, if they haven’t been forewarned it will come as a huge shock. Which is exactly what the surgeon did to me.

When I was diagnosed my sons were 11 and 13, but I knew I had to tell them enough to know the score, because if I was going to get sick and die, they had to be prepared for that by at least knowing that I had a problem and that I had to have an operation otherwise I might die. I have always treated them that way, about any kind of disappointment or bad news or anything, I have always felt I should prepare them for it if I could see something coming. I hate it when I see people lie to children. My uncle always told a story that when my cousin was young he fell and broke his arm, and in A & E the doctor told my uncle that the break wasn’t clean and they had to break it - by hand - in order to then set it properly; so he told my cousin “it won’t hurt” - and of course it did, and the look my cousin gave my uncle was so burnt into his memory that he never forgot it. I know how my cousin felt. I do know my uncle couldn’t bear to hurt or scare him; but in my mind it is saving a little pain now for much more later.

That is why I was so totally devastated to find that the surgeon had not been honest with me. Moreover I am not a child. There was no excuse. But yes, when you have had so much bad news, highball, it must be so hard to have to tell them more, that is very very hard indeed. It hurts you as much as it hurts them. More probably. But is there any alternative. Perhaps it is time for them to be strong for us. Or, for us all to be strong for each other.

sno

Have been reading all your comments and I can relate to some of them.
A Mammogram in 2002 showed calcification x3 , was core biopsed and told ok. So yearly mamms where set up for me. 2006 it was suggested that I had fairly new op SNB, No it is not cancer but it could become malignant. I was not pushed but asked did I want this doing, so the ball was left in my court. At the time I was very scared just lost a bruv in law to septicaemi and MRSA, explained this to surgeon and was told ok.he did not push it or explain the consequences to me. Mamm Oct 2007 showed non palbable tumour 18cm had WlE and SNB and was told it was invasive and had gone into one lymph node . grade 2. I cannot believe what happened surely this had been going on for more than a year. When I tackled my surgeon was told it was a good job we did yearly mamms. Could all the months of chemo and Rads been avoided if only I had been told it was imperative for me to have op in 2006. BUT Iknow what ifs won’t solve anything.
Bobbie

Bobbie, I am SO sorry this has happened to you. For me it puts things all in perspective.

Sno, in response to your original question (which I sort of alluded to in Lyra’s DCIS thread) I started writing something here and realised that its so detailed that I should (as recommended in forum guidance) not be posting it on the Web. So I’ll send it you as a personal message. Sorry for loading it on you. You can ignore it if you want.

Bobbie, were you recommended only SNB in 06 and nothing else? to check for spread? DCIS or non-worrying stuff is not thought to spread - so why would they suggest SNB, and not surgery to the breast, for a condition that is contained within the ducts?

Mammograms do not show everything in the breast; they don’t always show DCIS or invasive tumours. Many calcifications are not significant. Biopsies only show the cells in the biopsy, not what is going on elsewhere in the breast. A biopsy of a suspicious area as seen on a mammogram or ultrasound could show no particular problem after all. And there could still be stuff going on elsewhere in the breast that did not show on the mammogram so they would not biopsy it, so you would not know it was there.

The vast majority of women find their cancers between screenings. Those cancers are likely to be the more worrying ones because they have developed within that short time, whereas DCIS and similar abnormality sits there for the rest of some women’s lives without becoming a danger. I have heard it suggested that this may also be true of some low grade invasive tumours - can anyone tell me if this is right?

Upshot of this - so much is not understood about breast cancer that there was no way they could have known earlier whether, or how, a thing will develop, and to have surgery at the first sign of anything would mean treating what may never become a problem. That is the problem with screening: it doesn’t always detect things which may be a problem, and often detects things that may or may not, and then throws people into an appalling quandary, when only some of them will go on to develop a life-threatening condition. I don’t know if it is known whether the subsequent life-threatening condition that some women develop is always related to the earlier possibly suspicious signs.

I’m so sorry this has happened to you, it is traumatic, and all the more so when you’ve come for screening thinking that it can maximize chances of survival and minimize the treatment and it does not do either of those things, in spite of the fact that it is sold to us on those grounds. What, in my view, you, and so many others of us, should have been told - is that.

sno