Hello girls. I was diagnosed widespread dcis in my right breast a couple of months ago and it’s took me a while to make a decision as regards mastectomy and reconstructions / surgeons etc. I have researched so hard and had second opinions (2) until I am quite *happy with my decision. Anyway, I am having a mastectomy and immediate reconstruction and my plastic surgeon says my nipple can not be spared (not for dcis) and he would make me one, which was kind of him.
I was thinking about it recently and wondering … exactly why can’t it be spared? Then I researched further and read that the ‘aerola’ may be able to be spared (saving the ‘tattoo’ of the nipple area) but not the sticky out nipple bit because it is attached to the ducts. I may try to push for my nipple to be spared … or at least the aerola. Am I being too pedantic and a bit of a pain? Has any other ladies had nipple sparing mastectomy with dcis?
Thanks, Dawn
*happy? hah!
You can never be too picky - it is your body, you will have the rest of your life to live with it, and frankly my own experience is they don’t care about your body or your life, they care about ensuring all the dcis is gone so you can’t accuse them later of not doing it properly if you should get a further occurrence, and you are just one piece of spam on the assembly line. You must, since you have researched, found that only some dcis ever becomes dangerous in your lifetime, but they don’t really know which, although high grade rather than lower grade is more likely to. How far, as far as they know, or close to, the nipple is the dcis?
It may be they cannot do what you want for sound reasons - but make sure you ask for what you want, and make sure they give you a clear explanation and that you understand it, and that you go away and think about it, digest the info, and come back with further questions, adn go away and digest that. And ask again if you don’t understand. And don’t sign a consent form unless you are committed to what you are consenting to. And write in your own words on the consent form what you are committed to and consenting to and what you are not consenting to.
Well, sorry for expressing this in a bossy way. It comes from bitter experience. If they indicate in any way that they are fed up with you and you are being a nuisance, that is unethical, read the code of ethics (fat lot of good it is) - but don’t be pushed into anything, don’t let them pressure you in any way. You are not there to please them. Really really not.
sno
By the way, as far as feeling anxious is concerned, the idea that having mx will relieve you of worrying about whether you have cacner - I personally have not found it so. Nearly all of what I had did not show on the mammogram, only one tiny area of DCIS; there turned out to be more, and 5 tiny invasive tumours - but they did not show on the mammogram. Should I then trust the clear mammogram of the other side? I think not. Also, my WLE left unclear margins - meaning they cut through the ducts, with the possibility of disseminating cancer cells - so they could have caused metastasis by their intervention. As could the mammogram itself, by crushing tumours. Do I still worry about cancer? Oh yes, and I never worried about it before. In any case, recommending surgery ‘to allay anxiety’ is not a clinical reason for surgery. Is it your anxiety or theirs they want to allay?
Furthermore, the latest metastudy by Gotzsche and Jorgensen estimates that a third or more (I have seen another study say half) of all cnacers diagnosed on screening (all cancers - invasive and noninvasive) are overdiagnosed - will not harm the woman in her lifetime. So even the invasive tumours they found after surgery, and which did not show on tests, may not have harmed me. I regret ever going to screening, which I did not go to voluntarily; I decided not to go but then someone, unethically, telephoned me when I missed my appointment - I did not realize it was an opt-out system and I lost confidence in my own judgement when they rang me. But subsequnet investigations have shown that my instincts were sound. I could be dead or dying now. But Imight not be. And if I had developed a symptom, studies suggest that if I sought treatment at that point my prognosis would not be worse. Don’t take my word for any of this. Ask your doctors, do the research. Ask your doctors: “Are you recommending treatment for me because you don’t want me to come back later with a cancer and accuse you of not giving the right advice at the time?” Because the truthful answer to that might, just might, be yes. That would not be a clinical reason for recommending treatment either.
None of this is to say that the treatment you have been advised is not the right thing for you. Only pointing out importatn considerations.
Snow White, I too have been diagnosed wih DCIS, and have just had surgery for pathology testing. The pathology results showed this week that I too have other areas of my breast ‘infected’ with cancer cells.
My mammogram was clear and only a very small area was identified on the ultrasound. A needle core biopsy showed DCIS.
I am aware, thorough all the research, that DCIS might not develop into a primary cancer. However there is no way yet of knowing which patients will develop cancers and those that won’t. So unless you want to take that chance, treatment becomes a cautionary measure for those who want to take it up. I can’t imagine that anyone would want to leave a diagnosis of DCIS even though there may only be a very small chance of cancer developing. I certainly don’t want to leave mine and intend to go back for further surgery and radiation. I am not sure whether you are saying that you wish that you had left your DCIS diagnosis untreated? or are you saying that you are unhappy with the way in which the treatment was carried out without your full knowledge of what was happening at the time of diagnosis. Is you thinking now, retrospective? i would be interested to hear your thoughts.
Hi Snow White and Ania. Sno - I can totally relate to what you are saying and there is loads of controvesy about mamograms and early intervention and it may not be the best thing because more ‘things’ are discovered which may have been best left dormant in the long run anyway and ignorance is bliss etc. But in my case - my breast actually feels ‘wrong’ (to be quite honest it even felt wrong when I breastfed by son 13 years ago!), but this past year it feels very wrong indeed, itchy, painful, growing alarmingly larger than the other one. So I feel ‘something should be done’. If my mastectomy shows there is invasive cancer there I will naturally be horrified and yes, even if there isn’t - I will still be worried about the ‘good’ breast and what is going on in there. And so like you I will always worry about this (now this can of worms has been opened). Having said all that, now my decision is made, I want THE BEST OUTCOME possible. Sometimes when I read about ladies’ cancer horror stories on this forum I feel guilty about wanting this, but I feel strongly that women should not feel like theyn have been mutilated and left unhappy with their appearance - even in a life and death scenario. How we feel about our bodies and how it looks is important!
Well, there are women who do leave DCIS. There have always been some. My impression is that since the controversy has become more public, more do. Obviously I have not conducted a study. I don’t think anyone has.
Some, not all, who leave it will eventually get a symptom. For a few that might be a matter only of weeks. For most it will be longer; for some, decades. Some, not all, of those, will choose to seek medical intervention at that stage. Some will prefer to die than have the treatment - they may take the view that they have had an innings and that they would rather quit at that point than have such life as they would have if treated. They will be differently placed then than they are now. Their children might have grown, if that makes a difference for some. I don’t know how many would. It seems intelligible and rational and I have sympathy with that view. No-one has to take that view, and in a way it is not a choice: you can’t choose your favourite colour, you just find that you happen to like that colour; so some people just happen to have values that lead to that kind of thinking. They don’t think like that to annoy other people. They just are like that. It is their right. They aren’t telling anyone else what to do.
Of those who seek treatment when they have a symptom, some, not all, will perhaps have more treatment than they might have had if they had treated it earlier - but for some the treatment may well be the same. Some may have a worse prognosis, others the same. Those experts who think screening not a good idea seem to suggest that the prognosis when symptomatic is the same, in some cases, as earlier; because the earlier treatment, contrary to the propaganda, does not in fact gain anything - at least in some cases - except a longer time of knowing you have cancer, and a longer time of living with the consequences of treatment. They seem to me to be saying that screening isn’t the benefit it is claimed to be in terms of saving life or reducing the amount of treatment needed, in some cases.
Also, the claim refers not just to noninvasive cancer, but to invasive cancer. They are not saying it is not cancer. They are saying it is not going to harm people in some cases. They say that around a third of all breast cancers diagnosed on screening will not harm the woman; if left she would die of something other than breast cancer.
It is true that we don’t know which will kill and which will never develop; researchers are keen to try and distinguish deadly from nondeadly cancers. There is a suggestion that higher grade rather than lower grade cancers, noninvasive and invasive, are more likely to progress than lower grade ones.
Most breast cancers are found by women themselves, not by screening. However, once you have a diagnosis you have a problem. An agonizing decision to make.
I take it the decision is agonizing as you don’t want to lose a breast. If your breast is not important then the prospect of amputation or mutilation will not cause undue distress. For many women the problem with breast cancer is that it affects breasts. If it was a tonsil we’d probably all agree that since we can’t be sure if it will develop or not, let’s remove it to be on the safe side. With a breast it’s different - in the dictionary sense of the word, to lose a breast is mutilation. I would say the same applies to limbs or any amputation. Nothing follows about the worth of the person, but an amputation is what it is what it is. I can’t make an amputation not an amputation just in case people don’t like the word. Further, breasts are sex organs. They are erotic and erogenous. Losing a breast, for some women, is important. It changes life, for some women, and for some, in a way that makes them ask if it is worth it. Probably most women want to live, and make the best of life, but they do not like the change. That seems entirely reasonable and understandable to me. Not everyone feels that way, and maybe then the loss is more bearable, I don’t know; but I find it entirely rational, and humanly understandable that some women regard loss of a breast as a deeply serious matter. For some, a few, it is a step too far.
There are cases where amputation is necessary, unavoidable, to prevent death. Most people don’t want an amputation, I take it, but they don’t want to die. Hobson’s choice. Most amputees don’t say they recommend living that way, they don’t regard it as a lifestyle choice. If they could have had it any other way they would have, but they couldn’t, and this is how they are now, and they will make the best of life. They aren’t wingeing; and they are happy. But that does not mean they wanted it this way, or that it does not affect them. Of course it affects them. But they are not going to winge about it, and they are going to make the best of life.
When it is not clear whether the amputation is necessary, that decision, for me anyway, was and is pure agony.
In my personal case I did not attend screening. I thought about all the above and decided not to get involved. I did not realize it was an opt out system. Someone rang me, and together with the persuasive leaflets, and the person on the phone telling me I ought to go (and they had no right, no authority to do that, and it was pressure, and was wrong), my confidence in my own judgment was undermined and I went, deferentially thinking they must know better than I did. I found to my cost that that was wrong. So Ania, yes, part of my regret is that they misled me and persuaded me into something I didn’t want to do, against my instincts. But it got worse from there in my case because I was then further falsely reassured and given a false picture of what to expect, leading to traumatic shock when events transpired, and I subsequently found out that they had known all along and not told me. They could at least have warned me what was to come. So as I am sure you can tell I am angry and bitter about that.
But, as it turns out, it is entirely possible that I might be intact and symptomless now if I had not screened, or not had the treatment. It is also entirely possible I would be dead. Or sick and dying. Or sick and having treatment. Nobody knows how things would have turned out with the pathology that I had. They cannot say that it would have gone on to kill me. They cannot say it would not. They allowed me to believe it would have; traded on my belief that it would have. I did not want to lose a breast; I certainly did not want to lose it unnecessarily. And I am in a position where I don’t know. It does not provide any reassurance at all. On the one hand I fear death. On the other hand I could have been healthy and whole and have nothing to worry about if I had never got into screening. How is that any kind of relief or peace or serenity? And, as I said, a clear mammogram means nothing - most cancers are found by women between screenings, and a clear mammogram does not mean you have not got a deadly cancer. I worry. Treatment for DCIS has not stopped the worry for me. The intervention could have caused metastases which would not have happened if they had not intervened. I might now have metastases slowly growing for all I know, from that, or another primary. Or a recurrence, or a new primary in the other breast. Perhaps I will wake up tomorrow morning with a symptom…
So if I had declined treatment after diagnosis, I would not have been more worried than I have been since treatment. The treatment hasn’t stopped me worrying. I worry in addition that I might not have needed the treatment. And if I had developed a symptom by now, or in the future, it is quite likely I could have stayed intact for longer without a worse prognosis if I did seek treatment, which I may not have done anyway (it is alwasy impossible to know ‘what you would have done if…’, but one possible scenario is that if I had not screened, and found a lump, I would have thought - quite possibly wrongly - that it would have been too late to save me, or too late to save me unless by mx which I wouldn’t want, and I might have thought that my chances of staying alive, and the way I would be if I did, such that it wouldn’t be worth seeking treatment: that is one way I might have reacted; so I might have found a lump, kept quiet till I couldn’t, and then asked for palliative care). That is what I am thinking of doing now - I will never go for breast screening again. Nor cervical, nor bowel either - same issues of overtreatment apply. As to prostate screening, which they are considering bringing in for men.
And you can be pretty sure that if I do find a lump or get a symptom I will be so scared I will change my mind completely and rush to the doc. That is human nature. I don’t think I can be blamed for being human. You can also bet that if that happens, and I beg for treatment and beg them not to let me die, and I have the treatment and survive, then once the emergency is over, I will regret it afterwards because then I will have to be what I don’t want to be, and struggle with that. Perhaps it would be easier if I found a symptom and the cancer was genuinely life-threatening; perhaps it would be easier to live with the consequences. How a thing happens to a person has a huge effect on how they feel about it - compare the feelings of, say, Frank Gardner who was shot in back, and someone who, say, had a climbing accident - they, I think, feel very differently about their disability, about life.
And I have to say - what I say here is what I have understood from my own investigations; don’t take my word for any of it, as I am sure you won’t. But I have to say, and I am sorry to say, my experience has made me wary of the way doctors give information.
And - ‘undecided’ - you have made your decision and I fully respect that, please do not think for one moment I am saying what anyone esle should or should not decide, that is for them, as my decisions are for me.
sno
I understand what you’re saying and my mastectomy decision was agonising because I don’t want to lose my breast. Why? I think they are so significant to me as a woman because I am early 40’s and single (no supportive husband telling me they love me not my breasts, so don’t feel secure). Also my breasts are ‘huge’ (34G) and so one missing would look rediculous! A prosethis would be annoying at this size and so I’ve gone for reconstruction and a reduction of the other side. If I had small breasts (which I would have preferred to have) I don’t think my decision would have been so agonising but I’m sure small breasted women would say otherwise. Even if my outcome is small pert, lovely reconstructed breasts (I can dream) - It is NOT something I want to go through. The only Light at the end of the tunnel is if my lymph nodes are clear - I don’t have to have chemo, I don’t have to have tamoxifen, I am all clear and can leave the whole bloody thing behind me and not think about it EVER again. But that’s wishful thinking.
Dawn
Hiya - did you get my PM undecided. Don’t think it was particularly helpful though…
I asked my surgeon the same question. The reason I couldn’t save mine was that it was too close to the site of the DCIS, so going through all the agony of mastectomy (which is mentally agonizing, not painful) and the reconstruction (which seems easier to decide on but is more painful) to risk it all with an nipple that could reintroduce cancer, didn’t seem sensible. You can’t have the nipple recontructed for 6 months anyway, so I would look around and find the absolute best best plastic surgeon to do a fabulous job for you. I’ve even thought of saving up for a holiday in LA and getting a really fab one done there. We deserve it!
Just have to say that MY breasts were important to me too, so much so that I had beautiful implants put in 5 years ago. I never had much breast and it ruined my entire life from teens to now. I am now 48 years old and had right mastectomy for what was thought to be lowe grade DCIS and only ONE section seen on mamogramme/uss etc. After operation it was found I had TWO areas of 20cm each and it was INTERMEDIATE to HIGH grade. I have an expander in place and have had my first “re-fil”. They will eventually get it to the same size as my other implanted breast then remove the expander and put another implant in its place. As for nipple…I couldnt care less. I saw a girl on a beach in Greece two years ago. She was maybe in her late 20’s and had one breast and one fantastic scar - yes, she was topless and I applauded her. I’d rather lose my entire breast (nipple and all) than my life!
I agree with Snow White 5th December. From my diagnosis to mastectomy was just 2 weeks and 2 days. I am left reeling and wishing I’d asked more questions, taken more time to digest it all and seeked another opinion. You sort of get pushed along at a rapid rate of knots and the next thing you know, its all over. Then you’re left with this great big hole. You have to try to fill in all the gaps yourself. My mind is blown. Does anybody or has anybody else felt like this?
Liz
I was dx Nov 2005 with DCIS, after WLE it was found to be widespread and high grade so I had skin sparing mx (lost the nipple) with immediate recon in Jan 2006. Sentinal node biopsy found some micro-mets so I had chemo and then a year of Herceptin as the path results found the mets to be Her2+++. In the meantime I had a nipple recon (they called it ‘skin origami’) and reduction to the other side. That sounds like a lot of treatment. It was, but I’m well now and happy with the results. I had very large breasts too so it is a kind of bonus to have 34DDs which are up where they should be, instead of around my waist though I’m in my late 40s. I would say the surgery was the easiest part, so if you get away without chemo you’re doing well. Yes, the fear is still there, I’ve seen two close relatives die of cancer since, but fear has to be put on one side in the interests of sanity and having any kind of life. I have tended to trust the advice of doctors and surgeons simply because they’re professionals who know a lot more about cancer than I do. It’ll take time, but you’ll be alright.
Hi Snowhite
I was really interested to view your posting of the 7th Dec.
I am struggling at the moment with the mastectomy decision, not from dcis though. I had a grade 3 tumour removed in Dec (nodes were clear) but 4 of the 6 margins were unclear and am finding it really hard to take up the teams recommendation of mastectomy and possible chemo ( although last meeting said hormone therapy instead) I think I’m making myself very unpopular by asking so many questions but the more I ask the less I realise there are few definitive answers. Do I go ahead and take the chance of the pathology report coming back totally clear and I’ve lost a breast for nothing (as you say you’ll always be worried) or take the risk and just monitor and then go for the op if/when it reoccurs?
With best wishes
Cloud9
Hi I’m new to the site and have just been reading everyone’s comments. I was diagnosed with DCIS just before xmas and am having a mastectomy at the end of January. It has taken me many long weeks of trying to accept the diagnosis. I went for screening as I had turned 50 and remember thinking after the mammogram that it was so uncomfortable I was glad not to have to go back for another 3 years. I was totally shocked when I had the letter that I needed to return for further tests. I had no lump or any strange feelings associated with my breasts. The further screening involved more painful mammograms and a biopsy which revealed extensive dcis. As I have small breasts the surgeon felt he had no option but to consider a mastectomy. If he did a lumpectomy he would have to take so much of my breast away I would be totally misshapen. I felt very bitter that although my cancer is early and non invasive my treatment has to be so radical. All my life I wanted bigger breasts so I could wear lovely tops and dresses but I had always consoled myself that it was the larger breasts being denser that would experience more problems. If I had larger breasts I could have had a lumpectomy. As it is I am having to face a mastectomy with immediate reconstruction. I have experienced anger. bitterness and despair and I need to start feeling acceptance as I am only a week and a half away from the op.I hate the way having small breasts and the way the health professionals say it makes me feel deformed. I certainly will be that after the op! I’m also curious how everyone seems to know exact details about their cancer. I have microcalcifications. lots of them all over my right breast but I don’t know about margins and cm measurements. I had done a little research prior to my diagnosis and had read about comedeo cells but I was so distraught at the time of my hearing the diagnosis and the fact I had to have a mastectomy that I didn’t take in what the surgeon was saying. I think I have intermediate level as that word was underlined on the pamphlet I was given. I have had no written confirmation of my diagnosis just verbal instructions from my breast care nurse about when to turn up at the hospital. It all seems surreal and I’m hoping I will wake up and find it all a horrendous nightmare.
Hi Annys
My story is very similar to yours. I was called back for more tests after my first routine mammogram in 2008, I was told I had DCIS and would have to have a mastectomy and I could have an immediate reconstruction if I wanted it - I didn’t have any symptoms and I didn’t even know DCIS existed. (I decided against the reconstruction and just had the mastectomy in October 2008) Like you, I couldn’t understand why the doctors and nurses were saying I was “lucky” because I had early breast cancer or, even, precancerous cells that may not turn invasive but I was having to have such drastic surgery. I had one day when I decided I wasn’t going to have the surgery and just wait to see what happens but I quickly changed my mind because I didn’t want to feel like a timebomb waiting to go off!
I came on this site and ladies were talking about wide local excisions and margins etc and different types of treatment and I didn’t know what they meant! Everyone’s bc is different and I think it is best if you concentrate on your diagnosis which is DCIS and don’t try to understand other diagnoses because they aren’t relevant to you and you just get overwhelmed. About a week after my operation I went for my results and that is when the surgeon discussed measurements etc. I was told I had a 10mm grade 2 tumour developing but it was so far away from the chest wall that the surgeon was confident he had got it so I didn’t need any more treatment. That is why you don’t have any information at the moment, because this sort of thing can only be found after your operation when they do tests on the tissue removed. You find out more after the operation.
At my diagnosis I was given an excellent leaflet about DCIS, you can download the leaflet on this website, it is BCC39. That could be the pamphlet you referred to in your post.
Unlike you, I have (had!) large breasts - I was 38DD. So even if you didn’t have small breasts you might still have had to have a mastectomy.
Good luck with everything. I am sure other forum users will be able to give you advice and tips about the reconstruction.
Love
Maude xx
Hi Maude thanks for replying and explaining your situation to me. I expect I’ll know more after the op as you suggest. I’m so glad that you have been spared further investigations and I hope it will be the same for me. Annys x