I went to my doctor after finding a lump and was referred for a mammogram. The lump turned out to be a benign cyst but the mammogram found some calcification in my other breast. They tried to do a biopsy but after several attempts were unable to get a sample and decided that the best course of action was to keep an eye on it to see if it changed. I was assured that it was unlikely to be anything to worry about. I attended 6 monthly appointments for mammograms with my latest being mid December. At this one, I was told that the hospital now had new equipment and that they would attempt another biopsy. Again I was told that chances are there was nothing to worry about (although worry I did!)and a week later I was diagnosed with intermediate DCIS. I had a WLE on 23rd December. I attended my follow up appointment with my consultant today where he told me that they had not achieved clear margins and I will need a second WLE which has been scheduled for Monday.
I feel devastated. I have managed to stay quite positive about the whole thing until now and I still know that things could be much, much worse (which makes me feel that I have absolutely no right to be feeling like I am). I guess I had my hopes pinned on putting the whole thing behind me after today and now I’m wondering if this thing is ever going to be over…
Frosty, you have EVERY right to feel like you do, and nobody on here will say otherwise, whatever we’ve had to deal with.
But you are right to focus on the (relatively) good news that you have had.
I had a WLE a year ago and they didn’t achieve clear margins so had to go back in again. I was told that it is not unusual, around 20% of people have to have a second op. Fortunately the second one was clear but my surgeon said she would have been happy going in a third time if it hadn’t been.
Right at the start is the very worst, when it’s all so new and raw. You’ll be surprised at how you will gradually start to feel better about it as your treatment progresses. And with DCIS rather than an invasive cancer you will almost certainly avoid chemo.
But don’t feel your experience is any less worrying, and keep coming on here for reassurance, a moan, to share good news, or just to offload. There will always be people who understand what you’re on about. Also give the helpline a ring, they’re very good at helping you to get your head round things.
I do know that I should probably consider myself lucky. after all, the DCIS was an incidental find and as I’m not quite old enough for routine mammograms it wouldnt have been found for a while yet.
But maybe a moan is just what i need, so here goes!’
I think I’m just exhausted when it comes to putting on a positive face for my OH and kids (19 and 21). It was easy to play it down as I did lots of reading and have relied on terms like ‘non-invasive’ and ‘confined’ to reassure them. However I also see all the other words which aren’t so reassuring and these are the ones that are dancing around my head now! I’m probably a nightmare to live with as I wont let anyone take the strain…why should I? I’m not ill? But if people treat me normally ie usual family bickering, then I think they don’t care!
Do you think they’re up to hearing a bit of that? Even if it’s necessary just to explain why you’re impossible to live with while you’re figuring out how you feel about it all?Yes all those good words are very reassuring but sometimes the scary words come into your head and just won’t go away. Would it really do them any harm to understand that you get scared?
I’m not suggesting you rant, just explain a bit of the confused feelings you have at the mo. Might make them feel better knowing that you felt able to open up to them.
But only you know your own family, that might be a completely stupid suggestion.
I can sympathise with you regarding positive face for family as I felt I had to do that also. Initally I did but as time went on (before op I just had to let them know how i really felt. I have two lads 23 & 21 and whilst the oldest wanted to know everything when I eventually spoke to him, the youngest didn’t say a word and to this day (6 weeks after treatment) he still hasn’t said anything to me. Don’t get me wrong he has been there for me but his way of dealing with is was to give cuddles and not talk about it. My elder son spent the whole time talking and taking me for treatment with my OH.
I guess what I’m trying to say is they all deal with it differently and for me, I needed them to know how I felt and am feeling and they can decide themselves how to deal with the changes in our lives.Both of them in their own way have surprised me with their coping mechanism and maby your kids will too.
As Choccie says you know your family best and it is your decision whether you speak to them or not. I just thought my situation might help you.
I went out for a meal and a drink tonight with OH and we had a good heart to heart. I told him how I was really feeling and managed to explain DCIS in a more impartial way. He was relieved as he felt that he was now on the same page as me and had been frightened that I was hiding the whole truth from him and that it might be much worse than I was letting on. I think Christmas acted as a bit of a decoy, giving us both the excuse to brush the whole thing under the carpet which meant that things were left unsaid that really needed to be said and we said them tonight!
Thank you both so much for listening and advising me, I feel much happier and I think if I had left it up to my natural instincts, we wouldn’t have had this conversation for quite a while!
Well done Frosty. You might want to have a similar conversation with your children too, even if just the first bit about explaining what DCIS is. After all they are old enough to have some adult interaction with their mum.
Glad it went well with OH.That is the start, you will now be able to speak to your kids because your OH knows the situation and will be able to help with an explanation.
You will probably be surprised how strong they are.
Well, I had my second WLE yesterday, all went well I think but need to wait for results which will be next Thursday.
I had the chance to ask some questions and I now know that my DCIS was 9 mm, intermediate and that my surgeon was aiming for 2mm border clearance. He has already told me (assuming clear borders this time) that I will not require any further treatment apart from an annual mammogram. Although this is excellent news, it seems everyone else in similar situations seem to get radiotherapy. Now I know I dont want it if it can be avoided but worried that I might need it! I’m confused by statistical information I have read which seems to suggest a fairly equal balance of pros and cons.I have queried this already with my surgeon but he just said it’s not necessary. Would be interested in your views? Also is 2mm clear borders the norm? It doesnt sound much!
I know its natural to worry but am I right to question my surgeon or is it best to just go with the flow?
I think you should question your doctors as much as you need to to understand why they are making the decisions they are, as long as you really want to know the stats (but for DCIS they should be reassuring). Hopefully your doctors will be as good as mine who have always been prepared to explain once they see I do really want to know. If the info you are reading suggests an equal balance of pros and cons then that suggests there isn’t an overall benefit?
I also have 3 boys aged 23, 22, and 19. They have all taken the news of my cancer differently. Like you I kept it simple when I first told them, then I took the lead from them. One lives 200 miles away and wants to know all the detail by e-mail as it happens, the other two live closer and are content to ask if I am OK every couple of weeks. I think it is important to let them feel they can ask you what they want to know and they will I am sure.
Frosty, in the grand scheme of things your problem area was very small at 9mm. As far as I know 2mm is fairly standard. You might want to take a look at the NICE guidelines for what the suggested treatments are (particularly if you’re having problems sleeping, they’re VERY “dry” and will have you snoring in no time!)
A lot of the decision-making on treatment involves weighing up the benefits and side-effects of treatments, and they don’t like to over-treat if at all possible - sensible approach, I think. It is possible that your doc feels radiotherapy would be overtreatment for such a small area of DCIS but the best thing is to talk to him/her about it. And as I often say, give the helpline a ring too, as they will probably be quite familiar with the NICE guidelines and what usually happens.
I have IDC on left side with node involvement and DCIS on the right side. I am having radiotherapy to left side and not right. I asked the radiologist why this was and she said if the margins are good (2mm) and it is not close to the chest wall it is not deemed necessary and presumably the side effects of radiotherapy are avoided. My DCIS was only picked up because of the lump on the left and is seen as very low risk.
Hi Frosty, I am going through a very similar position as u. I had breast surgery on 12th Dec and had to have a WLE on 13th Jan. I have remained strong for my family - 2 girls 21 and 19! had 2 wks at work and 2 wks off since 7th Dec. I have now been told that have found further DCIS. Although surgeon said she had taken as much as she could at last op she is willibging to operate agian to get clear margins(14th Feb)- not a large an area as last op . If clear margins achieved I will have to have radiotherapy due to nature of DCIS being widespread. If not clear margins a MX. I am scared as I don’t know if I shud have just gone for MX as alot of woman have done- just hate the thought of no breast! Gone from a small insignificant calcification to this BUT I just keep having to remind myself that I have been soooo luky compared to what other woman have had to endure - young woman but still why me!!!
Hi Frosty and all who are at different stages of treatment.
I had WLE on the 18th January 2012 and will be having second op on the 8th February. I could really relate to your post as this is exactly how I’m feeling. I’m grateful that it has been detected early and thankful for the treatment received and support. But I feel emotionally drained at the moment. wishing you well in your recovery.
Hi everyone. Havent been on here for a while, I guess I have just been getting back to normal, putting it all behind me,catching up with work etc.
Having cancer though, (no matter how small) is a bit of a life changing experience and certainly puts other aspects of your life into perspective. Then I come and read some of the posts on this forum and that puts my own little bit of cancer into perspective too. Thanks to everyone for the advice and support you gave me, you really helped me to stay strong and to make the right decisions. So now I think its time to try give some support back. Thanks once again xxx
