hello i had mastec last nov for widespread dics ,then 15 sess rads which finished 5 weeks ago ,must say i have been quite good since even gone back to work part time (foundation teaching at local primary school) i am still waiting for my check up after my rads though rang hospital they said it could be upto 8 weeks before i hear anything !! so just as well i am ok .i am 51 and post menopausal, so dont have that to worry about .iam also waiting to here from Addenbrooks genetics as my sister has had bc twice 15 years ago in left breast then 6 years ago in right breast, so we have to wait !!!!
Moving post Dear Bernie
I am moving this to its own topic heading so it will be more easily seen
---DCIS controversy ---Hi, my name is Bernie. I was diagnosed last November, WLE and node removal and told it was all in the ducts so I wouldn\'t have to have chemo but margins not clear so would have to have mastectomy. Then my surgeon called me back in and said sorry, mistake was made, one of the nodes was positive and another borderline so I would have to have chemo after all. That was cruel, I didn\'t feel lucky that day. Anyway, had the mastectomy and immediate reconstruction, new breast \'sells well\' (plastic surgeon\'s phrase) but the chemo is truely awful, just had my second and seem to be getting all the side effects going. The thing that bothers me is the idea that DCIS is staged at 0 - pre cancercerous cells shouldn\'t initiate all this violent treatment surely. My surgeon told me after the mastectomy that the DCIS was high grade so might well have caused me future problems but I still feel that I was well before diagnoses and all this treatment has permanently messed me up. Supposed to be writing up my PhD, can\'t concentrate, just shaved my head and look like an alien, feel like someone waiting around to die. Kids and husband have been great but I feel like I live on another planet most of the time.
Not that I\'m not grateful on another level for the excellent care, wonderful surgeon who probably saved my life - but, well, positive thinking isn\'t coming too easy. Surgeon assured me that I\'d have to live to be a hundred statistically before it came back in the other breast, that sounded good after the mastectomy but as time goes on I fell less reassured. I\'m with you women who dread the screenings. Yes, why don\'t they MRI scan DCIS patients before mastectomy? Especially since I was constantly being MRI scanned for a study - why not use that information to inform my treatment?
DCIS I was diagnosed with DCIS last February. The \'area of concern\', as they called it, was 52mm. It was grade 3 and I had a mastectomy in March with lat dorsi recon. I had no radiotherapy and no chemo as my lymph nodes were clear.
I have also had a nipple reconstructed - two weeks ago and I am waiting for it to shrink and heal.
I had a mammogram last Wednesday on the \'good\' breast and I am now awaiting the results - these will apparently come by post - just wish the postie would hurry up!
Like many others I dread the thought that I may get it in the other breast particularly as what I had was grade 3.
Hi Sue ........so sorry I didn\'t notice your post - and it seems nor did anyone else. I havn\'t had a recon so I am afraid I cannot help you. Do you have a specific breast recon surgeon (few and far between). I\'ll try and rustle up a few of the others who might be able to help.
Take care and do let us know what is happening
introduction Hi, I\'m Sue. I am 53, almost 54, and last Feb I found The Lump. That was no problem, but the DCIS in the same boob was. After biopsy etc it was diagnosed as high grade but not yet invasive. As the area was central and upper, I decided on a mastectomy, as I was going to lose what little cleavage I had anyway, and as I am self employed I didn\'t relish the time off I would need for radiotherapy. Plus, of course, I would always be worried about it coming back. I am so glad that I am not the only one who worries about it appearing in the other breast, I thought it was just me being paranoid!
Haven\'t had any recon, I have quite a large dent as there has been damage to the pectoral muscles, so an inflation type is not on, and my surgeon wasn\'t sure if I had enough spare flesh for a dorsal recon. (I\'ve got plenty spare on my tummy, but he didn\'t suggest that.)
Anyone out there in a similar situation?
DCIS on mammograms Neither the DCIS or invasive cancer I had showed up on any mammograms which I had. The ultrasound showed I had a solid lump, it felt solid. It was only when I had the lump out (which I had been told was definitely benign) that I was then told I had DCIS around a 1.5 cm tumour. Dense breast tissue hides cancers, most premenopausal women have dense breast tissue.
Apparently in older women, dense breast tissue predisposes towards having breast cancer, so mammograms won\'t be that good.
Just my luck to have dense breast tissue and be pre-menopausal
Different figures! .....curiouser and curiouser. My figures came from an onc doing research for cancer research in Cambridge and they are very different. My DCIS was high grade and extensive - I managed not to have a mast because my surgeon (also a recon surgeon) was able to do a oncoplastic re-arrangement of breast tissue, when she removed the DCIS tissue. Very architectural and apart from a small scar underneath my armpit you could not tell that a large amount of tissue was removed from my breast.
High grade does show up as calcifications on a mammorgram - I assumed all DCIS did (could be completely wrong there).
I know that there are schools of thought that say that BC is caused by mammograms, I do not know enough about that to comment one way or t\'other.
Hi Mole It is interesting to hear the info on DCIS I had it a couple of years ago and because it was wide spread I had to have a mastectomy. The one thing I have never understood is how it developed so quick. It was 8 months between my two mamograms. The first was totally clear, 8 months later it was so bad I needed a mastectomy. I am picking your brains here but do you know how quick it can develop?
DCIS and likelihood of progression to invasive cancer Dr Susan Love\'s Breast Book (3rd Edition) has a comprehensive section on DCIS from pages 267 onwards.
DCIS treatment is controversial because very little research has been done on women who haven\'t had conventional treatment for it. Once someone has had a mastectomy (the most common treatment in the past) there\'s no way of knowing whether it would have progressed or not. Autopsies on women who died of other causes suggest that between 6 and 16% of women live with DCIS without symptoms and that it is not a rare condition.
Some studies mentioned in Dr Susan Love\'s Book suggest that about 20-25% of women with low grade DCIS will go on to get invasive cancer at the site of the biopsy up to 25 years after the initial biopsy. Low grade lesions may take a long time to be cancerous but there is no guarantee they won\'t eventually.
However, in my way of thinking (I have low grade DCIS) around 75-80% of the operations for low grade DCIS are really un-necessary and the other 20-25% could be put off for maybe 25 years.
Dr S Love also says that ironically high grade DCIS is the easiest to contain as it grows in a concentrated area and doesn\'t tend to spread out. Don\'t know where she got this idea from - I had low grade DCIS which was concentrated in a small area so I don\'t think it is as cut and dried as she suggests. she also mentions that the high grade variety shows up as calcifications on mammograms which the low grade one doesn\'t.
She says the dilemma is that low grade DCIS which creates fewer and less aggressive cancers may require mastectomy. The high grade DCIS which is more likly to invade and to create aggressive cancers may be treatable with wide excision and radiation.
my low grade version was treated with segmental mastectomy ( a quarter of my boob removed (side near armpit) plus radiation.,
ON page 276 she gives details of B17 a study on DCIS recurrence when radiation was given / not given. It looked at treatment with wide excision, radiation and tamoxifen. Radiation has an impact on numbers of invasive recurrences thought not as much on DCIS recurrence. Tamoxifen halved the incidence of non-invasive recurrences from 5.1 to 3.9 % and halved the incidence of invasive recurrences from 4.2 to 2.1%.
I can\'t remember where I read about regression of DCIS to atypical hyperplasia but I am pretty sure I did read it somewhere.
I am hoping further research will come up with less aggressive forms of treatment which are as effective. Too late for us of course,
Hi Mole It\'s nice to have you back, you have so much information to give. Hope you had a good trip.
I too am interested in your point about it regressing back, never seen that before. Before I had each of my ops, I tried really hard and believed I could make it go away (kill off the cells) by changing my diet, taking lots of antioxidants to fight the cells (even tried visualisation). Sadly it didn\'t work, but who knows if I\'d had more time.
It\'s really frustrating to read that most ops are not necessary, I knew that before I had mine but I didn\'t dare take the risk. And I still live in fear of it returning on the other side.
Do you have any view on whether the large increase in incidence of BC in th last 10 years includes cases of DIS? This was raised in another thread, but no-one was really sure.
Doh what? Hey Mole
Where did these figures come from? My understanding is that there has been no significant trial/study on DCIS to indicate that it would regress back if remained untreated. Far from it. Who would participate in such a trial? I think many women end up with mastectomys with DCIS because the first WLE does not get clear margins so they usually then opt for masts (if only they used MRI\'s for high grade - they wouldn\'t have this problem-). I know I have put the stats for DCIS in a thread in DCIS heading somewhere - they are very different to the one\'s you\'ve quoted.
naivety I really think they should stop deluding women that early detection means less surgery. DCIS can often be widespread and my understanding is that overall about 50% of women end up with mastectomy and this figure is probably higher for DCIS even though DCIS is pre-cancer and hasn\'t developed the capacity to spread.
I would like to see research leading to ways of getting DCIS to regress back which apparently some cases do anyway. I think a lot of the operations for DCIS are not really necessary as it is estimated that it only develops into cancer in about 30% of cases over 15 years. Thus 70% of ops are not really needed.
DCIS has only been detected in large numbers since mammograms were introduced as it shows up as calcifications.
a little less confused yes of course its all making sense now. i was not offered this as the DCIS was in 2 distinct areas. one under the arm at the tail of the breast and the other at the bottom of the breast. I did try to go down that route as was initially keen to hang on to my breast. One of the few things ironically that hadn\'t gone south despite breastfeeding 2 chidlren. Hey ho. I I also tried to hang on to my nipple and could be seen campaigning for the \"save the nipple\" placard and all! That was not to be either so now have a cute one made up of my new breast and once it is tatooed will be a pretty good replacement.
Agreed the biopsies were hideous. The bruising took ages to clear I was bruised and bruised again. I was getting a bit fed up with being brave at that point as well. But as I had not even considered that I would need a masectomy I was niaive. People kept telling me that it was the earliest point of detection so i assumed I would get a couple of tablets maybe a bit of radiotherapy and that would be it.!
I think it would have been beneficial if I had been prepared for the possibility as when I was told it was a bolt from the blue and I hadn\'t thought of what I needed to ask. I wasn\'t mentally prepared. i suppose the fact that there were 2 nurses the consultant my husband and I in the office I should have guessed.
Hi all I was diagnosed with intermediate to high grade DCIS in JAN 04 at the age of 42, I have very lumpy breasts and decided I really ought to get them checked out. After 14 biopsy\'s over both breasts - ouch!!! it was discovered and I had a WLI. The margins were not clear so I had another WLI much deeper this time and they are confident they have got it all. I had three weeks of radiotherapy but refused tamoxofen as I am pre menopause and didn\'t like the sound of the side effects as opposed to the small benefit of taking it. Since then my Auntie has been diagnosed with BC.
I was really OK while having treatment and found I could cope quite well but afterwards I went to pieces totally. I just kept worrying that it would come back and no one was looking after me anymore etc. However a year on and I am feeling a little more positive. I don\'t think about it every minute of every day and don\'t grope my boobs every 5 mins to check for new lumps!!. I realised that yes this is an awful thing we have but compared to some I was very lucky. I just try and be more kind to myself now and enjoy life a bit more (i was a constant worrier). I decided to try things I wouldn\'t normally do and I went ice skating, unfortunately i am now sat here with a broken elbow in two places!!! ce la vie, I suppose you never know what life will throw at you next and when it does get bad you have to deal with it the best you can. I have had great support from this site and I hope others can get the same when they need it. Big one arm hugs to you all
--- Hi Venetia
A WLE is a wide local excision, which means they remove an area of the breast which they hope contains all the cancerous cells. They examine all the tissue in the \'path\' lab and if they find clear margins around the bad area, they do not have to operate again.
If it\'s widespread, as they found with me, they will end up doing a mastectomy to make sure they get it all.
I think most of us accept what we are advised because we are too scared to do otherwise.
Poor you having 3 biopsies - I honestly found that the worst thing.
And don\'t worry - a year ago I didn\'t know about any of this - so ask as much as you want someone will know the answer.
confused - you will be Hey there
Sorry I am new to the forums and everyone is speaking a different language. What is a WLE what are paths and margins.I didn\'t get one i don\'t think.
I found a lump ( well more of a macaroni shape) had it checked had 2 mamograms and 3 biopsies trying to get a definitive answer. I was then told I had DCIS in two distinct places ( the lump I think was incidental or even co incidental) I was offerd a LH masectomy with immediate reconstruction and I have had no other treatment drugs or anything. I am going back for my nipple tattoo next month.
I have had the gene test as there is a jewish coonection on mothers side and mother had BC at 54 RH masectomy. 18 years ago.
I have accepted everything I have been advised. Is this wrong? Am I missing Something?
DCIS Hi, I\'m Helen.
I live in Surrey.
I was diagnosed widespread DCIS in July, had mastectomy and immediate DIEP reconstruction on 17th Sept.
Like some others here, I only had 1mm margin, which worries me, but not my oncs. There was also an area of micro-invasion as well.
I am er-ve, but pr +ve, which only occurs in 5%.
I\'m unable to take Tamoxifen, as I\'ve had a DVT, but could take Arimidex. Howver, I\'m still not sure, as I am low risk of recurrance, and do not fancy rthe side effects, such as joint pains (I already have painful arthritis.)
Like some others, I also don\'t consider myself \'clear\', as there is a higher risk of DCIS in the other breast, and I also worry about recurrance. (Could a nasty little cancer cell have gone travelling from the area of micro-invasion????)
Some days I try to stop obsessing by thinking I\'m more likely to die on the M25. Other days I can\'t stop worrying.
Am trying meditation, visualisation and dairy-free diet to increase my health status!
Has anyone read \'Women Of SIlence\' by Grace Adamson? Lots of info and ideas for changing BCers lifestyles for the better.
Clinical trials Hi Carol,
Sounds like you had a naff way of celebrating the end of the old year - lets hope the new one gets better.
I confess I am not quite clear about your treatment. I understand you have had a WLE for intermediate grade DCIS. Whether you participate in a trial or not, you should be offered radiotherapy - without radiotherapy you have a 15% chance of recurrence
with radiotherapy you have a 4% per cent chance of recurrence. There is quite a difference in those stats.
I know that were I to take tamoxifen it was only going to make a 1% difference in recurrence - so I opted (for lifestyle and other reasons) not to.
I think there is a lot to factor in when offered a place on a trial - I am of the opinion that I want what treatment is appropriate for my condition
and not to further medical science at the cost of my health. (I am naturally suspicious that scientists often get a bit too carried away with their experiments) Happily selfish and immoveable in that regard.
I\'m sure others will post too, but I am a bit anxious that they may not see it - it might be better to start a new thread for maximum responses. BCC could you move this question if no other responses
---Clinical Trials ---I had a 6mm DCIS removed by WLE on 30 December and have now been told it as intermediate grade and has been removed with clear margins. I have been offered the chance to take part in a clinical trial of tamoxifen or tamoxifen and radiotherapy, the decision as to which is a random choice made by the trail organisers. My Consultant said no further treatment was necessary just 6 monthly checks but I could join the trial if I wanted. I\'m not sure what to do - at the moment I feel fine and am reluctant to undergo treatment which is going to make me feel lousy, I have heard Tamofifen can have some quite unpleasant side effects, but on the other hand should I be turning down and chance of reducing the risk of a breast cancer returning. Would love to hear from anyone who is taking Tamoxifen and how they find it and any one who has any information that this sort of thing.
---Hi Frenchy, ---Hi Frenchy,
I was 49 when I was diagnosed with DCIS last May and had a Mastectomy & reconstruction in July, I was going through the menopause at the time. When I went for my check with the oncologist she said she wanted me to take Tamoxafin, but if I found the side effects bad to go back and she her. I have not found it too bad, I have been taking it since last August, some of the side effects I have had are being moody, my nails are in a bad state, but they could both be due to the menopause. I have not had a period since. I wear glasses for driving and reading and the optician said that Tamoxafin can in some people affect your eye sight, so suggested eye tests every year instead of every 2 years.
I have a friend who has been on Tamoxafin since December and she is having hot flushes every night, I have them now and then. So I think it very much depends on the person.
Hope this is of help,
Hi Frenchy .......for some obscure reason I thought tamoxifen was only issued to the pre or peri menopausal - doubtless I am completely wrong.
I was high grade and was offered tam after WLE and radiotherapy - I am peri-menopausal. I declined with my onc\'s agreement. My reason for doing so at the time was that as I was (still am) overweight and a smoker (not now) I was much more likely to become a stroke candidate on tamoxifen (it increases your risk) and I believe it was only going to reduce the chance of recurrence by approx 1%. I am sure we are all individual. Hopefully someone who is a bit more clued up on this can answer you better.
On a different note I see you are from Norwich this is my part of the country originally and today I rather miss it.
Take care frenchy and good to meet you
Is Tamoxifen necessary after DCIS Hi to all those who \'introduced\' themselves earlier in the month, sorry I missed it.
I had a masectomy for high grade dcis early October, it was widespread, and like others of you within 1mm of the skin. Because of this, and the fact that it was high grade, my surgeon has now offered me tamoxifen, although at first saying I wouldn\'t need it as there was no lymph node involvement.
I feel very lucky, especially when I read about others experiences,but I wondered if anybody else with dcis is on Tamoxifen, and what are the side effects?
I should add I am 54, and went through the menopause 5 years ago due to hysterectomy, if I keep on like this there wont be much of me left!!!!
sloshing Hi Celeste
No I\'ve never been that bad I needed to go to the GP, but I just wish it would GO AWAY!
I had a break of 8 months and I thought that was it, then they came back.
sloshing oestrogen too! .................know the feeling Anne I am having menstruel tsunami\'s really deeply embarassing. ~Are you on any meds?
hey jacks and jellyfish ..........yes I know the feelings. I have 2 breast \'mice\' (benign lumps) in my other breast. What I just cannot understand is if they are benign and they will always be so (which is what they tell me) - why do they continue to check on them?
Jelly fish I am very lucky because my surgeon is extremely meticulous and I know I am getting the very best help. Have you thought of asking for a 2nd or 3rd opinion. I think once you\'ve lost confidence in your surgeons it\'s very difficult to relax and feel you are in safe hands. Happy to recommend my surgeon but not sure which area you are in
Hi Hi everyone
Sorry if this is a bit long. I\'ve had DCIS and I think I might have become a bit obsessed with it!
I was diagnosed with intermediate grade DCIS in July 2004. My symptoms were a sticky discharge and a hypersensitive right nipple. I had the discharge for more than 4 years and during this time was referred to 2 different hospitals by my GP, both of which told me emphatically that there was nothing wrong with me. It was only when blood appeared in the discharge that it was taken seriously. A biopsy revealled a small DCIS. I was offered radiotherapy but I was convinced there was more in there and eventually (against extreme resistance from the hospital who said it was overtreatment) I managed to get them to agree to bilateral mastectomies. And when the histology came back there was indeed quite a lot more DCIS in the right breast.
I was told that mastectomy for DCIS gives a 98% cure rate, and I thought I\'d feel at ease and without fear after the surgery, but I don\'t. For one thing, my DCIS came within 1mm of the skin, and I have had no treatment other than mastectomy. I\'ve asked my surgeon about this loads of times but she says \"no need for further treatment as it was only DCIS\". But I\'ve done research on the internet and lots of sources say 1cm is the absolute minimum. For another thing, I\'ve seen plenty of other sources that quote much higher recurrence rates. I keep looking at the scar wondering how long before it comes back. Another thing is I\'ve got this big enlarged vein in my right armpit that I\'m convinced is something to do with the cancer. It\'s not a clot and it\'s not a lymph gland; I\'ve had an ultrasound and it\'s a distended axillary vein. It frightens me and I\'ve nagged and nagged about it when I go for my checkups at the hospital but they always say \"nothing to do with the DCIS - just a curiosity\". But the thing is, they\'ve been wrong before, haven\'t they?
Perhaps when my reconstruction is finished I\'ll be able to think a bit more positively about things. We are the lucky ones really, aren\'t we, compared to other BC patients.
hi I\'m sue, was diagnosed January 2004 with wide spread dcis so had no choice but mastectomy. I had recon at the same time and have had quite a lot of trouble with it. Just had further op in November .
I have got back to normal in a practical way but like many of you expect it to come back in the other breast!!
It does not help as I have a lump in the arm pit on the side of my remaining breast. It is getting slowly more troublesome but the docs are not concerned. I feel like I am over reacting but would prefer the cut it out. They say it would cause more problems if I had it removed.
It is hard moving on when something keeps nagging away.
However reading some of the other forums I feel I have got away lightly compared to many. It is good to talk, I did not know about this forum when I was initially going through treatment. I wish I had!!!
Nice to talk to you all
All the best SueX
Another one Hi there
I\'m 55 in March and STILL having periods - such a pain! I must be FULL of oestrogen.
I was diagnosed with DCIS in October 2004. I had 2 WLE with no clear margins. So I then had a mastectomy in Feb 2005. I was not tested for ER status and had no other treatment. I did not have reconstruction.
I\'m living a normal life again but always have this underlying fear that it will occur on the other side, and may get further before it\'s detected. Whatever makes the cells form must be still there. So I keep thinking - should I have the other one off?
And I need to find out more about MRI scans.
This forum was such a help to me when I was diagnosed, as I knew nothing and I learnt more here than I did from the hospital.
I keep lookimng in here in the hope that I can help someone else new who may be feeling like I did a year ago.
Nice to meet you all
--- hey lulu - why don\'t they MRI us high graders before they operate - I know MRI\'s are expensive but it must be cheaper than having two ops or even 3/4 if mastectomy/recon route. Madness!
Jessica - returning to work is really hard - let us know how it is going.
Isn\'t it strange that none of us think it\'s gone for good. I hope it\'s just a time thing - the more time passes the more we forget about it.
Where is everyone else?
DCIS My name’s Jessica and I’m 36. I found a lump/thickening in my left breast at the end of September, which turned out to be high grade DCIS with one tiny spot of microinvasion. I had a WLE (no clear margins), followed by a segmental mastectomy (still no clear margins) and then a mastectomy/reconstruction at the end of October. I’ve decided not to take Tamoxifen as it makes so little difference to my odds of recurrence but have been told I should not have any more kids (I probably wouldn’t have anyway as I have two little ones already, but still would have preferred to have had the choice). I just went back to work today and am finding the return to “normality quite hard. I also feel very lucky (in breast cancer terms, not in the general scheme of things) to have caught it so early but do find it hard to believe that it won’t came back.
Hi there My name is Justine, my mum was diagnosed with intermediate dcis in 2003 aged 52. She had a bilateral mastectomy, mainly due to family history (she lost two sisters to bc aged 46 & 49). If she\'d followed conventional guidelines she\'d have had a wle & radiotherapy instead.
I\'m pleased to say that mum is fine now, and doing well. She is having her blood tested against the genes (negative so far for brca1&2, although only a percentage is tested (NOT 100%)) by Addenbrooke\'s genetics clinic as they believe the cancers are due to a genetic fault.
I don\'t post on here very much as mum has finished all her treatment, and wasn\'t offered tamoxifen, but I do glance here once in a while to check the posts and see if I can help.
--- ---Hi - I\'m not sure why there are so few posts to this forum.
My situation is pretty straightforward. I was dianosed with high grade DCIS a year ago, My consultant said that as it was spread over a large area I could be a candidate for a mastectomy. He agreed to do a WLE which did not give clear margins. So I had a second WLE which was successful. I then had 30 sessions of radiotherapy and am now on Tamoxifen. So far, apart from the fact that my periods have stopped (no great hardship for me!), I have had no adverse side effects. I do feel pretty lucky but cannot convince myself that it is behind me and think along the lines of \"when it comes back\" rather than \"if it comes back\". Not a very positive attitude but I feel it is a realistic one.
I am 49 and pre menopausal (at least I was before starting Tamoxifen) and ER positive.
My mother had BC at 48 and died from it on her 60th burthday so that may explain why I feel as I do.
Let\'s introduce ourselves! .Hi everybody............ nicked the idea from the secondarys forum. Although I see there was a valiant attempt to introduce ourselves beforehand - it got hidden a bit in the moderators hello and the changeover of sites. So maybe a good idea if we try again
I was diagnosed with high grade DCIS in April 04, I then had a WLE - they did not get clear margins - I was then told that as the DCIS was so extensive and aggressive I should have a mastectomy - had an informed contact (told this story lots of times - so shortened version). who checked my paths and said it was not necessary - got referred to great consultant got second opionion and she did MRI and second WLE with oncoplastic rearrangement - yippee clear margins - successful. Given wrong advice on combination of meds on release of hospital and as a result had to have another operation (don\'t ask!) Had 25 sessions of radiotherapy during which my mum died suddenly - had to delay the funeral until after completion of treatment. Not on tamoxifen as I was smoking at the time - and there is a high risk of stroke with tam for smokers. I am 51 peri menopausal and occasionally get anxious about reoccurence especially as ER positive and HER2 +++ although I know HER2 status is not relevant if no invasive component can\'t help wondering.........................Although I do know how lucky I am.