DCIS & Mastectomy

Public Archive
21

Hi

Sno - I was told right from the start that if the DCIS was extensive they would do a mastectomy, so was aware of this all along.

I had a “successful” meeting with the consultant surgeon yesterday - the one I should have seen all along - and he was very positive about having an immediate reconstruction, so a very different story than the person I saw last week. Only problem is the plastic surgeon is away on holiday now, so I have to wait about a fortnight to see him. However my consultant is setting everything up, and doesn’t think the pastic surgeon would have a problem doing it. He also talked about doing a skin saving mastectomy, which sounds good.

Has anyone had an immediate reconstruction and this type of mastectomy?

Am so pleased I persevered - just think if I hadn’t started asking awkward questions and asking to speak to the consultant, then I would have been having a mastectomy next week with fewer options. For me it really appeals the idea of waking up with a kind of breast still there, even though I know I may need some further surgery to balance things up.

Again thanks for all your comments

Lyra x

22

Hi all

Lyra, I’m glad you’re feeling a bit better about things.I think it comes down to who we see doesn’t it. I must admit I found my last appointment a bit strange as I didn’t seen my consultant at all, biut instead it was a doctor who worked for him that gave the the bombshell that the clear margin were not obtained and that I needed a mastectomy.

Sno- I had to have a WLE to remove my lump in order for them to diagnose me as the biopsies kept saying inconclusive.So it was only then that they knew it was DCIS - I think it is quite unusual for DCIS to be a ‘lump’. So it was then that they said they would try again for clear margins but they would only try once because otherwise I would be too disfigured. I too have constantly asked loads of questions all the way along and it hasn’t always helped!!!

Now that I’ve chosen mastecomy with immediate reconstruction I have to go to a different hosptial and with a different surgeon anyway. Although I have done a bit of my own research I don’t know what type they’ll suggest for me yet. I quite like the idea of the implants although I’ve been warned these are better if you’re smaller breasted? I also hope they’ll be able to keep me balanced as I may need a mastectomy + recon on the other side too eventually after I’ve had my genetic test.I would wuite like a matching pair but I’ve been assured that they don’t need to be done at the same time to achieve a match!!

An interesting thread-let’s keep it going!

Love Freddie xxxxxxxxxxxxxxx

23

Hi Lyra,I hope you are feeling a bit better now after your meeting with the consultant surgeon. It seems such a shock when you are first told and I am sure your head is buzzing with all sorts of thoughts and information. I found the worst part always waiting 2 weeks for results very nerveing. I hope though I can give you some positive feedback on the experience I had. I was diagnosed with DCIS in July 2007 and ended up having a skin saving mastectomy (ironically my plastic surgeon was on holiday also)and immediate tram flap reconstruction which has turned out much better than I ever thought it would.( so much so that I was asked if a photo of my final outcome went in an album to show other ladies considering that type of op) I was also very lucky that I didn’t need chemo or rads. It took a long time to recover from the surgery and I thought I was going to be like old mother hubbard for life but eventually my stomach healed and it is now nice and flat, I also had mastopexy to my right breast and I think the plastic surgeon did a fantastic job they are better now than in my 30’s am now 53! I am just waiting to have my nipple tattoed and then my treatment will hopefully be at an end apart from the dreaded annual mamogramm. I can’t say that I still don’t worry about it all though and still have the odd down day, but coming on to the forums very often puts things back into perspective for me. I hope I haven’t rambled on to much and hope that all goes well for you and whatever op you decide.
Love Maria xxx

24

Hi,

Well, here I am, another reluctant user of this forum. I never thought I’d be here a month ago!

Snowwhite, I too have an issue of how I was informed about DCIS and possible need for mastectomy. After the screening and biopsies results I was not even told that I had DCIS just a large area of pre-cancerous cells with signs of some cancer cells. I was by the consultant that I saw told that I would need surgery to remove the affected area and then 5-6 weeks of radiotherapy. I went away, not exactly thrilled, but feeling that it was something that I could cope with. It was only after a further meeting with a different doctor who brought up the M word which frightens the daylights out of me. Since then I have had the WLE (see I’m learning lingo now) and await the results. I like my breasts and don’t want a rubber ball in there instead. In fact I have to say that I have learnt more on this site than I have from the staff who have talked to me. I’m a patient at the Western in Edinburgh. This is supposed to be one of the best places in the UK for treatment of breast cancer, shouldn’t they be telling me more?

I appreciate all the comments that you women put here and in other threads. This forum is a scary & confusing place to be but its good to know that you are out there.

And Lyra, I’m glad that you will be having immediate reconstruction. I’m with you there, I wouldn’t want to have to wait a year or so.

25

Hi Lyra,

Just reading this thread and I was quite shocked at how you were treated by the locum doctor. Having cancer diagnosis/mx is such a big deal and though treatments seem to vary enormously between hospitals and individual doctors, you should be given all the options and helped to decide what is best for you not have treatment dictated. This at least gives you some control over a horrible situation. Well done for insisting of seeing your consultant - it is so awful to think that someone less determined could end up with a treatment they don’t want.
End of rant.

My situation is that I had tumour and DCIS in right breast and DCIS in left breast. I opted for bilateral mx and immediate recon with expander implants. When I woke up from the surgery I felt like I’d been run over by a jugganaut/trampled by a herd of elephants but I still had something there! This helped enormously psychologically and emotionally.

The immediate result was - well not pretty - and became very uncomfortable over the following months. After 11 months my expanders were replaced with silicon implants and are more comfortable and look almost human. Nipple recon to follow - maybe.

The thing is there are lots of different recon options so it’s really important to go for one that suits you. Breast Cancer Care have a great booklet and also ther is one on the cancerbacup site (has photos). Another site I found useful was
optionsforbreastreconstruction.com.

I chose implant recon for the following reasons
* least complex surgery- though at least 2 ops are needed as the initial expander implants are eventually replaced with permanent silicone ones.
* Chances of a good end result for smaller breast sizes (I was 34B).
* Chance of a good match for bilateral
* If it went wrong potential to have a tissue recon later

All the best
Misha

26

Hi Lyra,

I have put for you below the link to the area of the website that discusses reconstruction. I hope this helps.

breastcancercare.org.uk/server/show/nav.385

Kind regards.
Jo, Facilitator

27

Hi all

Anne - Thankyou for saying what happened to you, it helps - it seems patently clear to me that your initial meeting gave inadequate information, and the information women are given about DCIS is now an issue since that letter to the Times back in Feb.

There are wider issues about communication, not just DCIS, about them taking decisions out of our hands, the way I wasn’t told about the m-op being one example, and the way Lyra was treated another. At least Anne, you have been warned now about the possibility - though I fervently hope your results will be favourable.

In fact I am so traumatized, still, about that - and it’s four years - that I have started another thread under DCIS (because that is how it came about for me) called “would you rather know or not know?” because I don’t think I am ever going to find peace on this, and need to know whether my surgeon was just a one-off or whether it is typical, and whether I am overreacting and have gone off my rocker or whether things are as they seem to me to be, and it was wrong of him to treat me in that, as it seems to me, patronizing and also cruel way.

sno

28

I had LD flap reconstruction after skin saving mast and it is fairly poor cosmetically (though the surgeon and BCN rave about how amazing it is). I know it is poor by guaging the reaction of people who have no medical qualifications, so it is not just my subjective view. However after the op I felt quite positive; it has deteriorated with time.

Like Sno I was not informed of the possibility of mast. Mine was supposed to be a simple WLE and it was only when the results came back they mentioned mast. I was told I could have reconsruction but not offered a choice, I have ended up with a really s*** lump and i am supposed to be grateful for it. I still feel upset, shocked, mutilated and violated, almost a year later. I suspect they think they were being kind in not telling me that it was a possibility but I doubt everything the medical team say now as it damaged my trust in them, I feel they “edit” and i can not trust them to treat me like an adult. I think they say what they think we want to hear but they don’t know us as people. I also wonder if it is an issue of competence - do they know or ust gues what your final treatment will be. I really doubt they will keep promises. I doubt they will “tidy up” the reconstruction and it’s clear they soon get bored with you after the life saving drama is over- the BCN seems to think it is just me and I am abnormal for not “moving on”.

Good luck to all x

29

Lyra, I suppose you are still hanging in and have not had the mastectomy yet. I expect the wait is awful but I hope that you are feeling a bit better about what they are offering you now.

Sno, back to your comments about not being told up front: In my first meeting when I was diagnosed, I was handed a pamphlet by the nurse who specifically said that there is a lot of information in there that won’t apply to you such as the stuff about mastectomies. And of course now that is what I might be facing

I went back to see consultant this week after the WLE two weeks ago. Top margin is not clear and now they want to do more surgery in a couple of weeks to take more out. Not the mastectomy yet, but if this does not work then that’s what they will recommend. So another scenario I was not expecting. Since the DCIS has already produced one tumour I can see the reason for getting rid of it. But the mastectomy sounds awful and reconstruction not much comfort. I won’t even have much sensation in it.

In some senses I feel guilty. I’m not going to die, at last not yet from this disease. Compared to what others go through should I just be happy? Last week I heard that the sister of a friend of mine had died of breast cancer and she is only 50.

30

It is terrible the way they give ‘throw away’ comments like that about the bits on mastectomy not applying to you - she clearly said that to make you feel better, as she would undoubtedly have claimed; how can they not see that it makes you feel so much much worse when they know full well it could come to that and we only find out later - like being the last one to know your husband is having an affair - I felt kind of foolish after they told me about the m-op, like I felt I could’ve said, “you knew, you knew, all along, you sat there and talked to me, and answered my questions, and studiously avoided mentioning the m-word, and now you’re telling me this - I almost wonder if you’d actually prefer to not tell me now and just sedate me, operate without my knowledge, and tell me afterwards it had nothing to do with you…you’d really rather I was a rabbit and you were a vet and you wouldn’t have to tell me anything.”

I fully understand this sense of guilt - but I would say, don’t allow yourself to feel guilty - it is only the sanctimony of others that makes us feel it is wrong to be sad about something genuinely seriously bad happening to ourself just because there are in fact other people worse off. The logical conclusion of that attitude is that only the worst off person in the whole world is allowed to grieve for her sorrows; everyone else has to laugh it off and say, “lucky me, could be worse” - which is idiotic for 2 reasons, one, that no way does someone else’s bad luck make my bad luck into good luck, no way does someone else’s bad luck negate my bad luck; two, exactly how do you decide whose luck is worse, and who is to make that judgement, and does that person’s bad luck ‘trump’ mine, and is it a competition to see who can suffer the most? Ann you have every right to feel sad when sad things happen, and if this isn’t sad, then what could be? And any health professional who does not have the decency to acknowledge the genuine seriousness of this particular heartache (however terrible other people’s plights are) is failing in the requirements of their job, and failing in their duty to you. And should be struck off. Or re-educated.

On here we do know how much this hurts, and you certainly can know that we care, and we know how you feel, and send huge commiserations.

sno

31

Ann, i am thinking of you and wishing you luck with those results.
Jane x

32

Thanks Jane, I’ve got a horrible feelign its coming my way though (the mastectomy that is) Has anyone here, apart from Lyra had experience in negotiating for a better result? At my meeting on Tuesday the consultant said that he thought that if it happened i could have immediate reconstruction and thought that I may be able to keep my nipple. Is this something that they ar going to reneg on? I’m worried about wht you saying about them losing interest. THe BC surgeons are really in there to save lives and probably less intersested in emotional nightmare of losing self esteem, sexuality etc. Is anyone REALLY happy with a reconstsruction?

33

Hi

Thanks for all the shared experiences and for thinking of me. Sno I agree with you; I’ve had a few people say how “lucky” I am that they have caught the cancer so early and what brilliant technology, and I’ve come to the conclusion some say this to simply make themselves feel more comfortable - they feel so awkward they don’t want to acknowledge how terrible this all is. Plus I don’t think it’s helpful to compare people and have competitions as to who’s the worst off. What’s really bad for mere may be considered ok by someone else.

I feel I’ve had a bit of “a break” from it all this last week or so - no hospital appointments, as I’m waiting for the plastic surgeon to return from his hols - in fact it would have been comforting I think though to get a call from the BCN’s to check I was doing ok, but I realise that’s a bit idealistic.

Anyway, back to reality now. On monday I shall contact them and remind them they are going to see if the surgeon can see me this coming wednesday rather than next. Been reading up a bit on different types of reconstruction, and have to admit none seem that great. I’m grateful for all the info that gets shared here, and as a result am lowering my expectations about how it all might look. I spoke to someone who knows someone who had an immediate reconstruction, but because they took muscle from her back it didn’t feel right - too hard and muscular rather than softer breast tissue. Has anyone else experienced this?

Someone else commented to me how our bodies usually let us know when somethings going wrong inside, but cancer is peculiar because our bodies don’t tell us, we get no warning… And I think that’s why DCIS is so hard to get your round - well for me anyway - there was nothing wrong with me, I was/am fit and healthy, then a routne mammogram ( my first ever) changed all that - and now it’s like I’ve got to change how I see myself, as someone with early cancer, but I still feel the same as I did a month ago.

Warm wishes to everyone,

Lyra

34

Hi All

Ann- The agreement to immediate recon was the result of my obvious horror at the m-op, though there were no “options” as the only way it can be done at this hospital is LD so it LD or nothing. Maybe your hospital, or a local hospital has a wider range of recons on offer? I so hope it does not come to that for you but I have read posts on here from people who are thrilled with all the various types of recons. Perhaps ask how many the surgeon has performed? Ask to see other women - not photos. I know after seeingand feeling mine several women decided to wait for referral for DIEP or another option. Best of luck.

Lyra - You’re right - like you and most on this site I felt fine and my body gave no hints of cancer so it really annoys me when people say gravely “you always know”. It is scary because you don’t and it feels shocking to face something that will perhaps cure you when you don’t feel sick. Re recon; my LD is very hard, totally muscular, odd shaped, twitches when I lift myself up from the bath or pick up a bag etc and my back is numb yet hurts - but I’d still rather have it than nothing at all. Don’t change to feeling like someone with cancer if you can help it, stay as much “you” as you can, it helps with treatment to have some sense of what you are going through it all for.Also thoughts on “life savng” sound spot on.

Love to all

Jane x

35

Hi everyone

Thanks for sharing how the LD flap has been for you Jane. Likewise at my treatment centre this is the only type they offer. Beginning to think the Diep flap might be a better option, but I guess I would need to be referred elsewhere for that, and it would also mean waiting to see the plastic surgeon here - maybe this week but probably not till the next - is a waste of time. I was diagnosed with DCIS on April 30th and after a 2nd biopsy was told on 14th May I would need a mast., so I would hope a referral wouldn’t take a further month. Plus we have a family holiday booked for the end of July and I would really like to make that.

Has anyone had experiences of being referred elsewhere? Starting to feel sick and anxious about having to battle again to get what I want…Think it’s cos I’ve had a bit of a reprieve last week, not thinking much about all of this, getting on with my work, and now with the prospect of further encounters with the medical prof the horrible reality of it all is hitting me all over again. Can’t sleep - hence writing this - and experience waves of nausea. Does anyone else feel like this?

Lyra x

36

Hi Lyra

We all do sometimes. It should not be a struggle but it is and if there is an assertive friend, partner or parent who will attend with you it helps as they can advocate when you are just feeling overwhelmed by the struggle. I sort of gave in and was passively managed because I could not keep trying to say what was important to me and I think that is part of why I feel so rotten still. I really think the bolshy peopleget a better service so consider whether, even if it is not your next of kin, whether an advocate would help.

Also, from my perspective even tough LD is very disappointing I think I would have suffered more in having a gap between m-op and recon. Do not know about referral elsewhere. Are there women at you hospital who will show you thier results? I keep hearing on here about people who were delighted so maybe I was just unlucky - ask the BCN if anyone will show ad tell.

Love and luck

Jane xx

37

I am new to this site, having just been diagnosed with intermediate grade DCIS (B5a). I have been offered a mastectomy & sentinel node surgery, as well as breast reconstruction. “It was thought that the extent of the disease in relation to the size of breast meant that mastectomy would be the best option.”

A couple of questions : What is B5a? Can anyone elucidate for me?
And - I’m seriously considering just having mammograms to monitor the extent of the cancer. It may never become invasive & mastectomy seems rather radical. Is there anyone else out there who is doing this?

Thanks.

38

Lyra, yes definitly know that feeling of nausea, sweating, sleeplessness…
Good luck. At least you have some time on your side. Its not like they have rush you in to get rid of the DCIS. So stand up for your self.

Ann

39

Hi konski

I don’t know if I can find a nice way to say this, but I want to say - I am not a medic so I cannot advise you on the ‘watch and wait’ though I gather that some people do adopt this approach with DCIS and it may be something you can and should do - or not, I don’t know - what I do want to say is: don’t be railroaded into anything - I say that because I was, and I know others on here have felt so too. So please carry on asking and asking and asking, and get other opinions, and do not have surgery unless and until it is your own personal decision to do so - because it can never be undone and for many women is traumatic.

DCIS is not an emergency, and I know I would have felt terrible if I had had the surgery for DCIS and always wondered if it had not been necessary; I agreed to have it because I was told that the mammogram and biopsy do not tell you everything and there could actually be an invasive cancer undetected by these means, and I have children. I am not sure I would have done it if I didn’t have children. Invasive cancer was removed with the surgery in my case, which made me feel that at least I had not had it for nothing. The surgery is still terrible though and I felt railroaded, so I just want to protect you from that by saying don’t go forward unless it is your own personal decision.

Jane - so glad you said that about LD flap, no-one else has said that before to me; I go occasionally to a support group (not much support there though) and the reconstructed ladies have mostly had that op and say they are satisfied with it, but they say it in a sort of strained way that tells me there’s more, but they’re not saying…they don’t mention the jumpy muscle, for example, that wmen on here have said; God it is so hard to get b**! information - I think some women invest so much hope in the recon and so want to put all the pain behind them that they just want to will themselves to be content with what they have so they can move on, which I guess is their choice but I’m afraid I am more demanding of recon and basically I want the nearest thing humanly possible to what nature gave me and I want to look good naked, I already feel happy with how I look in clothes, I don’t need a recon to fill a bra, I need one for when the bra comes off - and I have been referred elsewhere for an alternative option, but still havne’t decided. So many women are not happy with what they have. And pictures I’ve seen of surgeons’ handiwork that they are proud of, and they don’t look that good to me and trying to lower my expectations I still can’t work out whether that is better than the absence (which I loathe)…or whether it is worth the risk of more surgery…and whether even the best immediate recon is really any use, and how a man reacts to what is just a blob of fat on your chest, and whether it would feel like making love with a cushion on your chest - not my usual preference, I have to say - the upshot of these musings being to say that there are so many things to consider about recon and it seems to me a lot of women go for it panicked and horrified by the alternative, which is horrific, but the question for me, is whether recon is actually any better. Or are we just in %*& whichever way we turn. I rather think so, personally.

So - lyra - you are being so strong, and I can only recommend you to stay strong, and keep pressing for your right to be referred - recon is a minefield, but immediate recon minimizes the scarring; and I would imagine - but don’t know - that if you can keep your own nipple the appearance would be better than any nipple recon; but different plastic or oncoplastic surgeons have different experience and do not all offer the same recon procedures; LD and DIEP seem to be the most common now, but there are others which you may be suitable for and which may be preferable to you - buttock flap for example, but not many surgeons do that; one in Norwich, and one or more in London - St Thomas’s possibly, and possibly elsewhere too. And the outcome is going to go with you for life…

So keep strong, and take care
love to all, sno

40

Hi There. I have looked at this site over the last few months but today decided to register and maybe find some friends who might be in the same position as me and also help with morale support. I will try to be brief but it is difficult I went along for a routine mammogram in March and they found cell changes, a biopsy followed and I was informed it was bc and they would have to operate I did mention my mom had bc and had died from it and if anything I would prefer to have a mastectomy - I am 57 and felt I didn’t need my boob anymore so take it all away, I had a post-op appt for the next week and they told me to look at all the information and let them know. I went back determined that it was mx I wanted saw the consultant who told me they would be doing a lumpectomy I said I wanted a mx she reasured me that everything should be fine - I did feel cheated somehow as I had set myself to having a mx, but inwardly relieved it would be a lumpectomy. Had the op and was quite pleased with the outcome went back to see the consultant and hey presto she said not enough margins cleared had to do another lumpectomy, talk about being winded felt the same as when they had first told me I had bc. I then said no I wanted a mx with reconstruction. Anyway to cut a long story short I had my mx and reconstruction on the 29th May I have to be honest I had looked at dvd’s and pictures of women with mx but when it happens to yourself it is a shock. I have an appt with the consultant this Thursday I am feeling apprehensive about the appt hoping everything is okay and trying to put together a list of questions but I feel my mind is not focusing properly - can anyone out there suggest any questions that I might find useful?
Regards
Lettuce