DCIS

Hi  

Whoa, and breathe... You aren't supposed to come here and get more worried.

We're meant to be the good guys :)   Maybe you have fell into the 'must get info' trap and read everything whether it really applies to you or not ? There are many sub types of breast cancer and dcis is among the better (maybe not exactly the right term) to be found with and is considered borderline bewteen pre-cancerous and early breast cancer. So it has been found about as early as it could be.

With DCIS the important bit is the IS - It stands for 'in situ' or only in one place (so not spread) The clear margins thing isn't as bad as it sounds either. With lumpectomy surgery they try to take as little tissue as possible to still leave you with a decent shape but they have to balance this with taking all the cancer cells meaning sometimes they need you back to take a little more but we are only talking a couple of mm's here. About one in five need to have a little more removed but that is better than four out of five having too much removed if that makes sense.

J had dcis 8mm and that was over 5 years ago now and is still classed as no evidence of disease. Know this is a scary time but do hope for the best it is far better than fearing the worst :)

You are like a tea bag, the more you find yourself in hot water; the stronger you will get.

Hugs, G n' J

I had 11mm DCIS two years ago and clear margins on first surgery.  Read my profile as I'm two year NEDDY X

Thanks Dreamthief for you reassuring words. Yes I guess I have read a lot but I've stuck to the reknowned sites like this one and cancer research but I admit I'm still a little befuddled. To be honest everything the consultant and cancer care nurse told me has disappeared in the fog of ether, my partner remembers more but even he is a bit vague due to shell shock I think. I recall her saying something about radiotherapy but I can't recall exactly what. Is it usual to have radiotherapy and how do they do it. Do they zap it during surgery or is it done later? I have my pre op assessment on the 16th so I must write a list of questions to ask.

Mine was high grade DCIS.  I had WLE in July followed by 15 sessions of radiotherapy in Sept.  They just wait for wound to heal and then you have planning meeting where they take various measurements in readiness for radiotherapy..

Hi

Sometimes i think that what you find on the internet can be very frightening but there are also many positive stories too so try and focus on them:-) DCIS does have a very good prognosis.

I too had DCIS - although high grade and over 6x3 cms I had a right side skin sparing mastectomy (unfortunately I’m not very blessed on the breast size front so that was thought better for me than any other surgery). My consultant was happy that margins were clear and the chances of it occurring in the other breast aren’t any higher than for anyone else (although that doesn’t stop me worrying). I didn’t need chemo or radiotherapy but will take tamoxifen for 5 years. I think nothing other than tamoxifen was needed because my lymph nodes were clear.

You will find the strength to get you through this it’s not easy but take it a step at a time.

I hope all goes as well as it possibly can for you - big hugs xx

Ps if I ever felt/feel overwhelmed I stop reading about it for a while and that helps to stop my mind escalating!

Hello

Try not to worry too much , most people with breast cancer don't come on this forum , and people often put discussions on when they have a problem and ask for advice , but the reality is that most people have a straightforward diagnosis and treatment, so although it may appear that most people have problems , in reality they don't ! Your consultant is the specialist who has spent many years training and doing their job so be guided by them , take some pointers from this site and you may now have a few questions to ask of the consultant (or breast care nurse) but please try not to worry , as even if things don't always go quite to plan , there is always another plan!

Jo xx

Hi Undergroundbarbie,

If it's any help, I had 4.5mm DCIS and 1.5cm tumor.  Grade 2.  I went for my first routine mammogram in June and then got a callback and had biopsies and staples put in 2 places.  When I met the surgeon in July, they talked about radiotherapy but didn't go into too much detail about it. Now I understand that they didn't go into too much detail because although they strongly thought that it hadn't spread, until they carried out the operation, they couldn't be sure because I also had the tumor.  When they do the biopsies, they also check under your armpit to try and feel lumps and bumps - they didn't find any in mine.  But the ultrasound /mammograms they do are very accurate on what they can see, so they will be nearly sure that they are correct in their assumptions.

You have been told you have DCIS without a tumor, which means it hasn't turned into a tumor yet, so the cells  have potential to become cancer.  It's called pre-cancerous and non invasive but has the potential to become invasive.  Grade 2 is intermediate growth.

I don't know how long it takes to grow, but if I had been called to my first mammogram earlier, then I presume part of my DCIS would not have become invasive, because they would have known to 'take it out earlier'.

When they perform the lumpectomy (WLE), they aim to get a clear margin of 1cm either side.  I had an 8cm lumpectomy.   It sounds as if they will aim to do 7cm WLE to get the 2cm clear margin for you.  They also took my sentinel nodes (2 for me but people can have 1 or more of these).  I chatted with 2 other ladies when I was at radiotherapy and they had DCIS and also had sentinel node removal.  They take those nodes as this is IF in the very unlikely event there is a spread, then these would be the ones it would spread through.  The fact they are talking about 'just' radiotherapy means they are pretty certain it hasn't spread at all. And you would be Stage 0 / grade 2. The radiotherapy started a couple of months after the operation, by which time it had healed nicely.

When I first saw the breast surgeon she said I might need a mastectomy, depending on the size of my breasts - I am a 38D breast size and when she examined me, said no problem we can do a lumpectomy (WLE). 

I had my operation with clear margins and then they discussed radiotherapy in-depth.

Throughout it all, I found that the 'fear of the unknown' (I hadn't found this site then!!!) was far, far worse than what I actually went through.  I had my operation at 4.15pm, was collected at 7.30pm that evening.  Took one day off work and the weekend - then was back at work on the Monday.  You must, must, must do your arm exercises.  I found my left armpit was 'tight' for a week or 2 and one of the exercises (arms behind the back) stretched a little, but other than that - no problems whatsoever.  I gather lymphodema is extremely unlikely for just a couple of so sentinel lymph nodes  being removed as we apparently have loads!

I was left with a dent in my left breast and my nipple was pointing left wards - but I've noticed that it doesn't look so bad (ie moving back to normal as time goes on,  and whether it's wishful thinking, but I am sure it doesn't look so dented any more).  I expect you will have an isotope injection (I had mine the day before the op) which turns part of your breast green - my other half said to me this very morning that it's fading quite significantly.

I finished radiotherapy 2 weeks and 3 days ago.  So it's all fairly new to me.  I am taking tablets for the next 5 years (they may have mentioned this to you? - it depends on why type of precancerous cells they are.  Mine is ER+, so as I went through menopause at 48-49 (51 now), I am taking Anastrozole.  If you are prescribed tablets, do try them.  You will see so many people on here who have side effects - but I have absolutely none and normally when there are no side effects, there is no reason to post so there might be 100's of others like me without any problems with their tablets which you don't hear about.

You will have a binder giving you advice on what foods to eat/avoid.  I researched more and read up on foods for ER+ cancer.  I also joined a gym in September as exercise is beneficial to cancer. I cut out all alcohol during the week and only drink at weekends now. I am a 'healthy BMI', but I wanted to make some positive changes. I was actually going to the gym at the weekends during my radiotherapy.  I feel sure that going to the gym, healthy eating has been a huge factor in how well I have felt throughout the whole of my journey.  Yes, my breast was a bit painful after the operation but nothing paracetamol didn't take care of!  I drove the 60 miles there and back to radiotherapy for 15 sessions quite easily and had no side effects (apart from the darkening skin and a bit of burning which opened up a bit, under my left breast a week after radio finished.  I discovered that this was actually due to me putting the radiance gel under my breast and the bra rubbing it - so now I only put the gel on from the nipple upwards during the day and overnight put it all over.)  I made sure I drank lots and lots - even getting a large coffee as a treat from the shop in the hospital after each session. First thing in the morning, I had a pint of squash and had 3 x green teas throughout the morning. (Green tea is supposed to be amazing for health....).

Hi thanks for your response, so much info it's great and very reassuring. Can I just ask when you spoke about the surgery you say they will take a margin of 1 cm so would be looking at a 7cm lumpectomy, that sounds huge and a large portion of breast. I'm a 

36 E. and it's to the upper part slightly above the nipple, did you mean cm or mm which is what I was thinking? I've also been told that I should expect to be off work 2-3 weeks to recover from the surgery.

Thanks. Caz

Hi Caz,

Oh, so sorry! I read your DCIS as 5cm!! not 5mm, so yours will be a very small lumpectomy :) I suspect they will also do the 1cm either side of it for the margins - but obviously I don't know as it's a lot smaller than I thought - so sorry to confuse you..x (so possibly a 2.5cm WLE)

I was told no driving for 2-3 weeks after and my boss had organised taxis (as I work from his home in the sticks) for 3 weeks.  On the Sunday 4 days after my op, I drove a bit and was fine, so I rang and cancelled all the taxis.  It's a 6 mile drive to work.  The seat belt went over my left breast (the operated one) and that was ok.  It might not have been if I'd had to do an emergency stop, which is why they suggest not to drive.  Each person recovers at a different pace and if you get sick leave, no harm in being off work :) I don't get paid if I'm sick, but was perfectly ok to work.  Like I say the fear of it all was far worse than the actual treatment itself.  And, I think they like to give you worse case scenario - just in case.  I was told about radiotherapy - broken ribs, lung damage and possible heart damage, burning - you name it I panicked that it meant it was all going to happen!  Just had a teeny bit of burning under my breast and that was it, so the best idea is to take their warnings on board, take preventative measures (exercise, drinking, creams etc) and ONLY worry if you have a side effect and read up/ring up what you can do to alleviate it.  If I'd done that my brain wouldn't have been going into overdrive about 'what state I'll be in' when I was 'going through it'.

Mine sounds to be in a similar position to yours (but to be honest no-one has told me where it was!, I even had to ask the grade from the oncologist during radiotherapy) - they did a 'pizza slice' and they went in on the left hand side of my breast, but having misread your post - my 8cm lumpectomy is a whole lot larger and it was nowhere near as 'huge' a dent as I expected from losing 8cm of my 38D.  So, you probably won't even notice a dent at all.  

x

Also realised I had said 4.5mm dcis  for me - it was 4.5cm +1.5 cancer = 6cm + 2cm margin (1cm either side) who knows if they need to a margin this size for 0.5cm dcis :)