DCIS & Mastectomy

HI
Today I have just discovered I am to have a mastectomy, and am shocked and confused. I had a routine mammogram about a nonth ago, my first and just because I had turned 50, was recalled because of sightings of calcification in 2 areas of my right breast, and a biopsy done. I was diagnosed with DCIS and a biopsy done on the 2nd area. I went in for the results today and that too shows high grade DCIS. Because the joint areas are extensive - 4cm -one is near my nipple, the other is a distance away but quite central, they advise a complete mastectomy and sentinel node biopsy. I did question this as much as I could since I had read that the treatment for DCIS can be radical and unnecessary, however they are saying it is necessary for safety and anything less would be a “substandard” treatment. I would appreciate others views on this, it’s hard to know who to trust and what’s ok, not being a medical expert myself. Also I asked about reconstruction - previously they had suggested this could be done at the time - but the surgeon seemed against this preferring to wait until later. When I began asking about different types I was told by a nurse that the surgeon would recommend what would be best taking account of my body size and shape. I beginning to feel I won’t get a say in anything! And it’s MY body. I feel awful, and starting to look at what’s involved in reconstruction and what it may look like has made me panic more…Sorry this is getting lengthy - it’s my first time on this site and I think people who have been through the experience are probably more “expert” than the experts I’ve met today!

Would appreciate any info and reassurances on these issues!

Thanks
Lyra

Hello, Lyra

Really sorry to hear your news, but you’ve come to the right place. You will get loads of support here, someone will be able to answer your questions, and you can just say whatever you are feeling, rant, cry - whatever.

Mine was similar, in that microcalcifications were seen on my first post 50 mammo. It is a shock, isn’t it? One day you’re fine and healthy, then told you need an op.

Yes, there has been a lot of media and discusion on DCIS recently, and it may seem to you that this radical treatment feels over the top.

However, it was explained to me, that around 30% DCIS can change and become invasive, they cannot predict whose will change. For this reason, standard treatment is to remove. As you have found, if there is more than one area, they would be unable to remove the separate areas if their position makes this impossible.

Lyra, it’s very difficult for you right now. My feelings were that I wanted the DCIS removed - I was lucky in that it was one area so have had the lump out and am now having radiotherapy. But, and I must stress that this is just my personal view, I would have felt the same if it had required a mastectomy. I could not feel the lump, so if I had not have had the screening, it might have been a few years (if my DCIS had been in that 30%) before the lump became obvious, by which time there could have been further spread.

I’m sure you will have ladies come on and post to you about the recon; but do take one step at a time. Ask questions, and if you still need reassurance from your clinic, try and ring the breast care nurses, they should be able to spend time talking through things with you. Those first appts seem a bit of a blur, don’t they?

One last thing - one of the things we have all found on here, however well meaning friends and family are, they often really struggle to know what to say. You may feel that they are keen to minimise how things are for you, “Don’t worry” (as if!!!) “You’re lucky they found it” - (Yeah, right, if I was that lucky…) Take a deep breath, smile, and come and rant on here. (or don’t smile - why should you?!)

Lyra, take care, day at a time
Lizzie XX

Thanks for your quick respnse Lizzie. I’ve just spent a disturbed night imaging all kinds of horrific reconstructions! Have lots of things I want to check out, so have decided to return to my clinic today and satisfy myself.

Am already finding this a valuable resource,

Lyra

Good call, Lyra, go and have a chat. Hope you feel better afterwards.
Keep in touch

Lizzie XX

lyra, i had a MX 2 weeks ago for a 4mm, grade 3 lump near nipple so i had no choice, and will need reconstruction further down the line. I get results next week but have been told i probably will need cemo etc because of my age (45).

I just wanted to tell you when i first had my DX i met with a lady who was 18 months down the line and nearing the end off her treatments. She offered to show me her newly reconstructed boobs, i was nervous but agreed. It was the best thing that could have happened, they were FANTASTIC, i was amazed how good and realistic they were, just like she had paid 3 grand for a boob job. The only difference was she had what looked like a pale pink felt pen line across the center of her boob. She had a false nipple attached which was to be tattooed to match the colour of her other one. if she was on a beach with a tiny bikini on she would have turned heads, she is 44 and looks amazing. I left her house thinking if thats what iv’e got to look forward to, bring em on.

That night made me feel a lot more positive about the outcome of my treatment. If you have chance take the opportunity to talk to and meet others who have been through it all.

Try to look at it as you will have a free boob job and a possible tummy tuck, depending type of recon you choose.

I hope i have helped and given you something to look forward to.

Luv to you all Pauline xxx

Lyra, forgot to add MX was no where near as bad as i expectd. Everyone is different but i was glad to be rid of the invader. Because of its position i had no choice anyway.

Had op 2 weeks ago, op tuesday night, wanted to kick me out wed morning but stayed till thursday afternoon. Had drain in for a week, probably the biggest bind. no stitches outside so none to be removed. glue on the scar so no dressings either. Painkillers and quick exercises 3 times a day. That was it. Just sat resting and waiting for results. So hopefully not as bad as you thought.

Luv Pauline xxx

Hi

Just thought I’d join you as I’ve found this thread really interesting.

I was diagnosed with DCIS a couple of months ago. I have had two WLE’s as they didn’t get clear margins the first time. I’ve been advised that depending on the results from the second one , I may need a mastectomy.My results day is the 20th May.

In some ways I would feel better with a mastectomy but I know this is a major deal.

Pauline can I ask- If they look that good I too would be impressed. However if DCIS is only in one boob surely it is likely that the reconstructed one would look very different from the normal one? I know it is quite drastic but doesit then seems better to have a double mastectomy to gain a more balanced look? I’m thinking about all this as when my consultant hinted that I may need a mastectomy he said he would do immediate reconstruction!

Love Freddiexxxxxxxxxxxxxxx

so much depends on where you live as to whether you are offered options or not. I wouldn’t want a surgeon who dictated what I had. I would try and go to a breast cancer centre of excellence and look around for the kind of surgeon who isn’t a dictator.

There are protocols on breast cancer and a lot depends on the position of the cancer, size of breast and kind of cancer, how abnormal the cells are and how quickly they are dividing. but I still prefer to be treated as an adult, and it is you who has to make the decision ultimately as no surgeon can operate on you without your consent

mole

hi freddie, i forgot to say, the friend in question only had 1 MX but while she had the reconstruction she was given an impant and what ever was needed for the other to look the same size, shape and position. Basically she had both reconstructed and i have been told i will have the same treatment. We would look strange with one going south and one looking like a teenager wouldnt we.

I have no regrets about the MX and i know at the end of all this at least i will look better than when it all started, thats the thought that keeps me going.

Hope i have made things clearer

Luv Pauline xxx

I have to say pert boobs and a flat stomach sounds quite attractive!!
Don’t mean to be flippant girls but got to get something positive out of this awful situation!
Kept looking at mine yesterday and deciding if they looked fairly similar after 2 WLE!!!

Lyra sorry i have no advice for you except this site is so good for support, it is all a learning curve and hard to deal with, take care love Debs xxx

Hi
I was diagnosed with DCIS 2 weeks ago - after a routine mammogram. I have 7cms calcification, so have to have a mactectomy - June 5th. I have been offered the chance of reconstruction at the same time - or some time in the future - my choice. I have decided against reconstruction in June - I just want to get the op over and done with. The op takes longer with reconstruction and recovery is longer.

Hi Liz 100

I have put for your below the link to BCC’s publication ‘Your operation and recovery’ which you may like to read. Hope this helps.

Your op and recovery: breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/100

Kind regards
Jo, Facilitator

Hi Lyra - I had similar situation to you, and I have to say I was devastated - 4 yrs ago. I think as Molennium says, it is really really important for you to be making the decisions and giving the consent - one of my problems has been that I felt the decisions taken out of my hands, as you are feeling, and I haven’t got over that. You do not have to have anything done unless and until you are ready.

The practice now should be to discuss immediate reconstruction - it may or may not be a suitable option for you. Not all reconstructions are as aesthetically satisfactory as that lady’s that was mentioned - even with the most skilled surgeon there are individual constraints on the possibilities, so you need to research these. In my view the appearance of the reconstruction is not the only consideration: if you have surgery to the other breast, that may disrupt sensation, which is important to some people for obvious reasons. It is a horrendous situation and these decisions are extremely difficult, but it is good to get other opinions about your reconstructive possibilites because different surgeons have different approaches and different preferences: it is your body, and they expect you to talk to other doctors and to have to discuss these at length.

With DCIS, they usually diagnose on the basis of mammogram, ultrasound, which show if there are suspicious areas which they then biopsy - and that only gives them information about the bit they biopsy. It is possible there is invasive cancer which is not detected by these means. I had a quadrantectomy which turned out to have 5 tiny invasive tumours as well as DCIS to margins, so then had the m-op, and there were many more areas of DCIS though no further tumours. They may check lymph nodes as well to check for spread.

But the DCIS diagnosis is a horrible horrible dilemma because for some women it will not develop into invasive cancer, but they don’t know which ones. I suppose, given that I had some invasive tumours, that the rest of the DCIS would in time have gone that way too. For me that helps in a strange way, because I can feel that I didn’t have the horrendous surgery for nothing. I know how I felt before the op, and I know I would have felt appalled to have that surgery and had no invasive tumours and always wondered if I hadn’t needed it. But I cannot say I am glad about it. If I had not had the op those invasive tumours would not have been found, and would eventually have spread - though no-one can say how fast. I suppose I might be dead or dying now. The choice then, it seems to me, is between the possibility of dying (but you might not, but you might) or having the horrible surgery. Hobson’s choice. Not an obvious choice in my view, though it is for many women. I think it would be good to ask what could happen to you if you don’t have the surgery - so you know what your ‘choices’ are.

Physically the m-op is, how can I say, not too bad in terms of pain and incapacity. Recovery takes a few weeks, which are soon over, and you are quite capable during that time. Emotionally is quite another matter - at least for some of us. I know it would have helped me to come on here before the op and talk about it and hear others’ experiences, to weigh up my own situation better, so at least I could have felt it was my decision. So I think you are doing the right thing by asking. Just very sorry you have found yourself in this awful predicament.

Very best wishes, sno

Hi

I just wanted to say thank you for all of you who have shared your expreineces and feelings on this topic. I’m finding this thread very interesting.

I am going to my appointment this afternoon to see if my second WLE has got clear margins or not. I have been diagnosed with DCIS and warned I may need a mastectomy.

What I find a bit weird is that my DCIS DID present as a lump- or rather lumpy area.It seems that most don’t . My consultant did say when he removed the lump that there may be invasive in the middle of it but pathology showed that there wasn’t. I hope they haven’t found any invasive in the edges. I have read about a number of people who have had a mastectomy for DCIS and only then discovered that invasive is there too.

I find that quite scary.

All in all I’m feeling that the clear margins thing is a bit irrelevant as my decision is made up for a mastectomy anyway now,

Love Freddie xxxxxxxxxxxxxxxx

freddie, hope your not still at hospital waiting for your results, i hope it all went well, will be checking again later to see if you have posted. If not the next time i come on i will be posting my results with you, lets hope we share good news

Luv Pauline xxx

Freddie / Pauline
Thinking about you both. I hope your results are good.
Liz

I am sorry for your worries as I too was in your position and had tissue taken and now await a mastectomy. My breast after WLE is absolutely painful, sore and hard. I have also been offered reconstruction but decided that because my breasts are quite big I would have the mastectomy and then later in the year opt for the reconstruction for “both” breasts as I can then have a reduction. I am 52 years old so the importance of visual body isnt the same as when I was young.

Take your time and make well informed, calm and determined decisions. If you can come to a place where the thinking is positive and the worries minimum you will find that you can take control of emotions and decisions. You are already thinking about what you want and getting good advice and it was you that typed the entry so you are doing everything right. Good luck and keep doing whatever you need to do. I have cried, screamed and laughed at the situation and it has all worked for me. God bless.

Hi to everyone
Thank you so much for all your comments and words of wisdom. I am feeling calmer and more grounded now, but have had quite a struggle this week to get to see people. Despite my local breast cancer unit telling me to contact them if I had any questions I found it difficult to get to speak to let alone see anyone for ages, just answering machines. Had to be quite assertive, but it has paid off and although my mastectomy op is still booked for June 2nd, I am getting to see the consultant tomorrow and can postpone it if necessary. It turns out the surgeon I saw the other week was a locum and my actual consultant was away - I only realised this afterwards and when I asked if I could see who I was “under” and had been expecting to see, things started to change. The nurses now seem to be more open to the possibility of immediate reconstruction - again it was the “locum” who had been against that, but they admitted this had not been ruled out at their meeting,had not even been discussed, it had only been agreed that I would need a complete mast. So, I’m really pleased that I’m getting to see the “real” consultant now. Plus I feel more informed now, so know what questions to ask. I also feel very strongly that whilst I am willing to listen and take on board what the experts say, I want it to be me who makes the decisions.

If I’m not happy with how it goes with the consultant, or they aren’t able to offer the type of recon that would be best for me (the nurses hinted it was limited what type could provide),then I’m thinking I’ll ask to be referred to Leicester - I’ve heard it’s good there.

Thanks again for all the encouraging words.

Lyra X

Hi ladies so i dont keep repeating myself and boring you i have just posted my results under ’ can’t believe it! ’

Im ok but i dont think it has sunk in yet

Luv Pauline xxx

Hi Lyra - glad to hear things are moving for you, and that you have made your own needs clear; you will probably have to keep doing that all the way through and not give up or be put off or feel you’re being difficult. At least, that is what I find, and as one who has trouble being assertive I find it difficult, you might not!

Hollymeg - glad your results are good!

freddiecider can I ask you - you said you were warned you might need a mastectomy: at what point in the proceedings were you warned? I ask because I have a huge trauma over the way I was told - rather, not told. I was told that either the first excision would be enough or if the margins were not clear then they would need to do a further excision to take ‘a little more tissue’. I asked lots of questions about every aspect I could think of and came away thinking they had given me the worst case scenario. No-one mentioned the m-word. When I went back after the 1st excision, expecting one of the either/or, I was told I needed a mastectomy. To me, ‘either, or’ means just that. They knew, as I now do, that with DCIS it sometimes turns out that it is more widespread than initially apparent and needs mastectomy. They could have told me at the start. Why did they not do that?

In fact can I ask anyone else - at what point were you told, if you have been, that you might need the m-op?