emotional trauma of mastectomy in DCIS

Hi
It seems that I have been plummeted from the sublimely unaware, into the depths of depression, following a chance discovery of DCIS, which, incidently, I had never heard of before. Like many people, I knew of a few women who have had breast cancer successfully treated, caught in most cases in the early stages of diagnosed tumours. all of these women to date, still have both breasts intact. I had thought that mastectomies were only prformed in the latter stages of breast cancer, when chemo and radiotherapy had failed.
Oh - blissful ignorance!
The paradox of being told that you have DCIS and that you are very lucky, beacuse it’s a precancerous condition, is very hard to come to terms with when you are told in the next breath that mastectomy is one and maybe ultimately the only option!
I have spent the evening browsing this forum and feel that in many ways I am one of the lucky ones. A simple mastectomy without radiotherapy or chemo. does I realise put me in a rather more fortunate position than many other women.
However, having now had a successful wide local excision of the main area of DCIS, I have now been told that the second smaller area thay thought was atypical, is also high grade DCIS and that mastecomy is the only safe option. I feel very emotionally attached to both breasts and am fighting this treatment at the moment, as it seems such an unknown quantity:
the medics say that it is highly likely that there will be other areas of DCIS in the breast and for that reason, mastectomy is the only safe option. However, I find it difficult to come to terms with losing my breast for a decision based on likelihood and past statistics.
I would love to hear from anyone who has had a similar reaction to this treatment for DCIS and also the experience of anyone who has had a successful wide local excision of more than one area of one breast.
Lotty

Are there any others who share my experience

Hi Lotty,

I went along for my mammogram earlier this year - only my second - and within a week, I was called back to have a biopsy in the main BC clinic.
To be honest, I didn’t flinch, I thought to myself,…well, there’s no history of BC in my family, so I can’t have it…oops!

To cut a long story short, I had micro DCIS. I went for a WLE and within the week I was told that my DCIS was high grade and my only option was mastectomy of my left breast.

I couldn’t understand it, like you, I was thinking no chance, mastectomy is for women who have the terrible secondary cancer, not me, mine is contained in the milk ducts, I haven’t even got a lump.
I kept thinking…Kylie had a lump, but she didn’t lose her breast, why do I have to, when mine has been caught so early…it was crazy.

When my BC nurse was telling me, it was like an out of body experience. She wasn’t talking to me…

So, that was last June.

Here I am, thinking…well…Gok Wan from ‘How to look good naked’ try and make a good cleavage out of my one boob, lets give you a real challenge…

I’m ok about it Lotty, I don’t say I’ve fully come to terms with it, but it does get easier with each new day.

I didn’t need radio or chemo, which was a blessing. Now I’m on the Tamoxifen which is getting better and in 5 years or so from now Lotty, I’m going to have a reconstruction.

It is awful, I would be lying if I said it didn’t upset me from time to time, but I’m back at work and everyone knows about me and I tell them I’ve had a boob job and I can take it out and show them if they want…I work in a school…nobody bats an eye lid Lotty and I live day to day thinking…I am ok and I’m going to live until I am 104…you see if I don’t.

Good luck Lotty.
Thinking of you (((hugs)))

Linda xx

Hi

I too went for my mammogram, unaware of anything, low and behold the next thing I know is Im called back for scan, biopsy etc. then told ten days later that I have dcis and the only safe option for me is mastsectomy, was told that I wouldn,t need anything else, so ten days after op I go back to be told as a precaution they are giving me rads which start on monday. I’m supposed to be one of the lucky ones caught early etc., but at the moment it doesn’t feel that way I’m still in a lot of pain and have pins and needles in my arm and back sorry rant over but if its pre-cancerous seems a bit drastic.

Heather

Hi Lotty,
I agree, it’s a shock, especially when you’re sort of used to getting a good report after the biennial mammo as I was. I do think we are lucky. There is a saying here which goes (translated roughly) - “I had good fortune in my misfortune” and that seems to sum it up. Statistics here (Switzerland) show 1 in 5 women likely to get bc so there was a fair chance of it being “me” (as it was). In the year after my diagnosis four close friends were diagnosed (other forms) and they have been going through the gamut of radio, chemo, hormones etc like so many others in this forum, so I count myself fortunate.

I had a choice of a large lumpectomy where there would have been no guarantee that all the sites had been removed so I would have to have radio and frequent checkups and probably also hormones, or a mastectomy with no further treatment (if they didn’t find anything else when they did the op, which they didn’t). I chose the mastectomy and had immediate recon and have had no further treatment (I am postmenopausal). Although there was absolutely no sign of anything in the other breast I was offered a mastectomy and recon there, too, as it would never have been possible to do a recon like the remaining one. I agreed to that as well. So now I don’t need to worry about that side either - because I am sure I would have worried about bc coming to it.

Perhaps I was not so emotionally attached to my breasts as you are, but the great thing for me was that I would be rid of the source of the trouble, could look forward and count my blessings. Which I have done, many many times - and I have a whole new attitude to life as well.

An friend in America who has been through all the treatments (she didn’t have DCIS) and is very active in counselling and so on over there said DCIS is something of an unknown as they don’t know if it will develop and spread, and if so, in what time frame. That sounds to me like a possible time bomb, so was a good reason to be glad to be rid of it.

And the recon? Well everyday I see myself in the mirror and know that inside me are the implants. But then I’ve got metal in my legs and am likely to have a knee replacement one of these days, so what’s the difference! The implants make me look better, and so I feel better. And the PERSON in the mirror is still ME!

Of course I would have preferred that none of this happened, but remembering that statistic makes me think: 4 out of 5 women here don’t get bc ,1 in 5 does. That’s not great - a 20% chance is pretty high in my view. So: Why me? or rather, Why not me?

It takes all of us time to absorb the news and what changes it will bring. Longer for some than for others. Lotty, I hope that you will soon start to look ahead and beyond your operation because as LindaH said, it gets easier with each day. We are not the same, physically, as before. We aren’t the same mentally before as now when we have cleared, or are clearing all those obstacles which loom up in front of us - we are stronger than we were before! So bon courage Lotty! And talk to the forums whenever you feel the need for sharing. You’ll have seen how great the group is.

petitepart

Thank you all for your comments. Heather, I’m angry like you and feel I want to argue against everything they say and say" Well how do you know for sure?" I haven’t had my mastectomy yet and am still arguing! Even though intellectually I understand the alternatives are risky. My children are young and I want to be here for them, but I wonder what I will feel after mastectomy when they analyse the tissue and maybe say “well it was just the 2 areas!” A bit late when they’ve wipped your boob off!
Linda - I thought exactly as you did seeing all those glamourous photos of Kylie. I suppose she must have faced the possibility of mastectomy and that may feel even harder to someone who’s young, beautiful and in the public eye - especially with a good looking boyfriend who subsequently dumps her!
My consultant has advised me to talk to another consultant, as he feels I may accept it better if 2 people have told me the same news. Petitepart, I do understand everything you say, it’s just the emotional side that’s finding it hard and just when I feel Im getting used to the idea, I wake up in a depressive gloom and start the next day thinking about it all over again!
It is comforting to know that you’re not alone and there are other women sitting on their computers at the same time thinking the same things!
lotty

The risk of getting breast cancer is more like 1 in 9 and that’s if you look at all ages i.e. up to 100 or so. The risk at age 50 is more like 1 in 50 if I remember rightly.

Mole

I’ll be honest with you Lotty, when they removed my breast and examined the tissue, whilst yes, they found some more calcifications, they were deemed low grade…ok, maybe that meant I could have held onto my breast a little while longer, but who knows when they - the Cals - would have changed from being low grade, to high grade…

Whilst mastectomy is radical, I know for me, it was the safest option and I can always go for a recon when ever I feel I want to.

I put my faith in my specialist and my BC nurse and I feel they did the right thing for me.

Mole, my BC nurse said the risks are 1 in 9, but she said over 50…ie me…that is when it all seems to kick off…

I live in an Avenue which has 14 houses, in those 14 houses, 3 of us have battled with Breast Cancer.

Sorry, I should have said that the 1 in 5 statistic is that for an anomaly in the breast turning out to be cancerous. All over, the latest figure for women getting bc - in Switzerland, I repeat - seems to be 1 in 10. Apologies. petitepart

hi there lotty
I was told i had the other LCIS mine is in my lobules. I had a mamagram in august with ulta sound I had a lump and they did 4 biopsies the same time as the ulta sound. I was told I was smack in the middle of having cancer, in sept I had the lump removed the lump was sent off for testing they found several changes and then sent it off to nottingham for further tests I had a horrible 8 weeks not knowing if i had cancer i never slept broke down in tears and could not eat. they got my result the lump was fine but they found this condition LCIS which is uninvasive at the moment but can turn invasive. I have decided to have double masectomy with reconstruction I can not live my life waiting for it to happen its like waiting for a timebomb to go off. I still can’t sleep and have weepy days but i no it is the best thing to do. I am fortunate to know I have this condition as it is not usually detected on a mamogram and only picked up when you have had surgery for something not relating to it. doing something now can prevent invasive cancer and all the treatment that goes with it. if I wait and it turns invasive I will have to have the masectomy and the treatment so why wait . I hope you think about it carefully as I have done and you will no yourself what is right for you . take care of yourself
love
gaynor
xx

According to Susan love’s breast book the evidence is that low grade DCIS becomes low grade cancer, and high grade DCIS becomes high grade cancer

that’s why I don’t want any further investigations on my left breast as that’s where I had DCIS. If it recurs I’m leaving it where it is. It’s unlikely to progress and I will have it treated if it does

Mole

Hi Lotty

I was diagnosed with DCIS at 35, after I found a lump on my right breast. With theWLE two areas of DCIS were removed. Like many women with a similar diagnosis, I was told I was lucky - and immediately after I was recommended to have a mastectomy. I really fought this very hard - I got second and third opinion from excellent sources - and they all agreed on the need for a mastectomy. I had multi-focal, intermediate grade dcis with cribiform growth pattern. (I think multi-focal was a decisive factor.)
I was in disbelief when my first surgeon said that there were “bound to be more areas of DCIS in there” - I thought “bound to be”? Don’t they know for sure? How can they take away my breast based on what sounded like guesswork?
As it turned out, there were five more areas in the breast, which was small to begin with and further reduced by WLE. Some were also high-grade.
I had mastectomy and immediate reconstruction 6 months ago and have slowly got used to living with my new breast. At the beginning I was very conscious of it, of the new asymetry (I had perfectly symetrical breasts before), and very reluctant to touch it. But I am growing fond of it now - I hope that doesn’t sound silly.

I am sorry if I have not given the kind of answer you had hoped for and I sincerely hope that someone does. If it comes to the worst, this site is a great place for voicing your feelings.

My best wishes,
Jelena

Molennium just wondering if you had the DCIS removed and whether it was low or high grade?
Jelena I don’t understand why they did 2 lumpectomies on you and then immediately said you shld have a mastectomy? Did I misunderstand?
You sound as though you have had a similar scenario to me - glad you are getting used to the new breast. What sort of reconstruction did you have?
I think it’s all a matter of self image. If you are happy with yourself it’s probably much easier to accept the change in your body and see it in a more positive light. I like my breasts too. I suppose they are my best assets physically! Not that that anyone sees them except me!
Actually they are no longer symmetrical anyway, as one is smaller after the WLE.
Has anybody heard of thermography? Apparently it’s used a lot in the States and can be quite accurate in showing areas of precancer and cancer as hot spots on the thermograph.
Another area to research!
Best wishes all
Lotty

Hi to everyone

I read with interest this thread, 4 years ago i went for a private mammo as a friend had just been diagnosed with breast cancer, I was just 50 and had just missed the 3 yearly call that my surgery has, i opted to go private to put my mind at ease as i would have been 53 when i was next called on the NHS.

During the mammo i remember the radiographer getting out different attachments to the mammo machine and thinking that this was not good. I was called back and asked to go for a biopsey. I went for one with total fear in my heart only to be told the next day that i had DCIS, a condition i had never heard of before, cancer was never mentioned only that it may or may not one day turn into cancer but no treatment was advised apart from yearly mammos.

You have guessed it, i went this year and was told i had two invasive cancers in that breast a lobular grade 2 and a ductal grade 1 ! I was so shocked as i thought it was going to be like the last time, i even delayed the biopsey by a few weeks to go on holiday so convinced was i that it was only the same old DCIS. Well i had my mastectomy in June and an auxillary clearance. Thank God i paid for my mammo as hopefully i got to it before it had spread to my lymph nodes. I do wonder though if something had been done 4 yeaars ago whether i could have saved my breast.

Needless to say as soon as the words DCIS or LCIS are mentioned in future if at all i shall be very alert and ask straightaway for something to be done.

Best to everyone
Suzy

Yes, I forgot to say, I had low grade focal DCIS around a 1.7cm or so low grade tumour

Mole

Hi Lotty,
I had a mammo followed immediately by an ultrasound scan, and microcalcifications were found. Then I had a fine needle aspiration which showed abnormal cells. That was followed by a lumpectomy during which the two areas of microcalcifications were removed (one fairly large), and the biopsy was done on the tissue removed - this is when I learned it was DCIS. The surgeon did not get clear margins, DCIS was multifocal and intermediate grade, I have small breasts, so I think they did their maths and decided that the most radical was also the safest option.
I had reconstruction with lat dorsi flap only and the reconstructed breast is slightly smaller that the other one, though since I’ve been on tamoxifen my healthy breast has not been swelling up with the cycle so you don’t notice it as much. I might at some stage have the reconstruction ‘touched up’.
Hope that helps – good luck with your research!
All the best,
Jelena

Hi all
I find it really helpful and comforting to hear your experiences.
Jelena, do you feel you have accepted the mastectomy and come to terms with it now? Have you found the lat dorsi flap reconstruction affected your back strength? How long do you feel it took you to recover from the op? (ie driving and generally doing what you normally do).
Suzy, it’s hard to know whether or not you could have had a lumpectomy. I suppose by all accounts it could have been a case of borrowed time for that breast anyway. I have been told the same as Jelena that if the DCIS is in more than one area, it is multifocal and renders the breast tissue unstable and that the safest option (not necessarily the only option) is mastectomy. My question is why they can’t remove the areas of DCIS that they know about (2 in my case) and one has already been removed with clear margins. If thermography shows up precancerous and cancerous areas as hot spots and the MRI scan I have already had showed up only 2 areas and nothing ese has shown up on the scan - I feel that they must be able to monitor it to a certain extent. It’s all so vague, as you also found Jelena,and seems a bit precautionary rather than absolutely necessary. However, it’s also evident from what you have said Suzy, that it can and does turn into an invasive cancer. It sounds as though you have been lucky that they caught it before it spread further.
All the best
Lotty

Hi Lotty,
I was diagnosed with high grade DCIS in several areas a couple of weeks ago and am having a mastectomy with no reconstruction next Tuesday. Are you booked in yet? It is being sold to me as a ‘preventative’ measure but also they do take lymph nodes out and the actual mastectomy itself is like a huge biopsy so they can test all the tissue to see if the cancer has invaded and become ‘real’ or ‘invasive’ cancer and thus requiring further treatment. For me, with young kids, this is my biggest fear. I think high-grade is obviously the worse grade to have and therefore more of a reason to have the breast off especially if it is in more than one area because as the plastic surgeon said to me, they could do 50 biopsies and STILL not get everything out.
It is a shock - and I don’t know how old you are - but the younger you are, the harder it must be. I am 42 and feel lucky to have had my breasts for this long been able to use them for breastfeeding - though I am still doing that and it has been hard to prematurely give up - but it is a loss. The way I see it is that one can have a reconstruction down the line or at the same time if you want and you can HIDE it. Yes, you can’t get your breasts out with low cut tops as before (if that’s what you liked doing - I sometimes did!) but thank god it’s not an arm or a leg. Having said that it is a personal and sexual thing, a breast, and therefore a difficult thing for a woman to lose - even if you have an understanding partner.

My thoughts are with you.

Good luck

L xx

Hi Lotty - so sorry that you have had to join the forums but sounds like you have been getting good advice and support from everyone here.

I was orginally diagnosed 4 years ago with a 1.5cm lump and had a lumpectomy then - this summer diagnosed with high grade DCIS and for various reasons needed mastectomy for that. It does seem back to front that for invasive cancer I had lumpectomy and mastectomy for non-invasive? I think the reasons behind it are that often more areas of the breast may have DCIS that don’t show up on mamagrams but are found after biopsy of surgery. In my case a small 1cm area on mamogram was in fact 5cm after surgery. I think sometimes they just don’t know what they will find and you just have to trust them and go with their recommendation?

Have you been offered immediate reconstruction? I had mastectomy with ld flap and an implant and it looks great and 3 months down the line I sometimes forget that it is not my old boob!!! It is a major op but I really wasn’t in alot of pain afterwards, driving 4 weeks later and have been swimming in a bikini and no one would know. It still needs to be pumped up a bit and the nipple done but that will be next year.I feel mentally I have coped ok as the reconstruction was immediate - don’t know how I would have felt if was not immediate? I think personally for me that would have been really hard. The only thing is the new boob has no feeling at all.

I kmow it seems such a drastic measure for a pre-cancerous condition and my husband could not get his head around the idea for ages - he thought it was not necessary. Anyway 3 months the line I am back at work and looking good!!!

Feel free to ask any questions about the op and hope this helps

Take Care

Sarah x x x

Hi Lotty
I am yet another one who went for routine mammogram and was told I had 2 areas of high grade dcis and was advised to have a mastectomy with reconstruction.
After surgery when my poor left breast had been cut about and analysed, it was found that the dcis was more extensive than originally thought they also found Pagets disease of the breast ( another type of cancer that is under the nipple). So it obviously was a good idea to have a mastectomy. It would have been recommended for the pagets alone let alone the dcis.
It’s obvious that mammograms and ultrasounds do not pick up everything and personally I feel it is better to be safer than sorry, although I hated losing my breast and still hate the fact that I’ve lost my breast.

But at least the pagets and dcis has gone and I just pray it does not come back.

Sandra

Hi Lotty,

Hope you’re well. I’m really glad and in a way relieved that Sarah has given you such a positive story about her reconstruction. Whereas it had not taken me too long to digest the information and to get used to the idea of mastectomy, I have found it difficult since the operation to get used to my reconstruction, and to less extent where the breast is concerned – it’s the muscle, or lack-of, that I find difficult to get used to.
I must add that I had a nipple-sparing mastectomy (quite unusual I think, but the tissue behind was checked for DCIS) - I had prepared myself for being nipple-less so when I saw it, it was just a huge shock. Even though it does not have the sensitivity of the other nipple, it reacts to cold. Hope this isn’t too much information.
On the other hand, I was somewhat reluctant to choose LD flap, mainly because I am skinny and felt that I had no muscle to spare, but two surgeons thought I did.
My initial recovery was quite quick, and I was swimming about a month after the surgery, driving about 6 weeks after, but it took me a long time and lots of exercising to recover strength. However, my muscles were already weakened from being over-protective after WLE.
I often get a feeling of tightness in my back and ribs. Now, however cool-headed I have been about other things regarding this disease, that one really puts my patience to a test. Also, my right (affected) shoulder is now higher than my left one – and since I am bony and skinny I notice it all the more.
Mostly, I have good-self-image days. But on those rare low-self-image ones, it’s my shoulder and the tightness and the scar on my back that bother me – I feel that I have lost more than just the breast. One thing that I had forgotten to take into consideration was that my back was my fave erogenous zone…again, hope that’s not too much information…and now I am somewhat ‘sensorially challenged’ as I have lost sensitivity in part of it. Not that that’s an issue at the moment anyway.
Exercising definitely helps with tightness, and has helped me regain strength and self-confidence. (Unfortunately self-discipline isn’t part of the package.)

Lots of ladies are very pleased with their LD recon and I am sure that, if it comes to mastectomy and choosing the recon, you will find plenty of help and info here. Keep us posted.

All the best
Jelena xxx