diagnosed today with DCIS
diagnosed today with DCIS Hello
I saw the consultant today and got results from my second core biopsy.
I have DCIS in the right breast.
I Have to see the Breast Surgeon tomorrow to discuss treatment.
The usual treatment is for the affected area to be removed,but I am wondering if it would be better for the whole breast to go to avoid the chance of it developing again.
What do you folks think?
similar diagnosis Hello Annalyn,
Your diagnosis sounds similar to mine, and in the same breast. Of course the size of the affected area may be different. My core biopsy showed high grade cancer cells, which I was told means that it might spread quicker.
I believe that the surgeons will offer whatever treatment they believe is safest for you, but you can still choose what you want done. In my case, the first surgeon that I saw suggested mastectomy, because my breasts are small. He also offered reconstruction that I refused because I wanted to get fit as soon as possible, as my husband has multiple screlosis.
I delayed the operation a couple of times (probably not a safe thing to do) while I was hesitating. Eventually I went for a second opinion, and the second surgeon offered to do wide local excision (cutting out the affected area), which I opted for because of quicker recovery time. However, the surgeon placed the scar in such a way that if he has to perform a mastectomy at a later date he will be able to continue the scar. The operation was just over a month ago and I am now waiting for radiotherapy to start. Radiotherapy has been delayed because of a sking rash; I am very sensitive.
After the blood test came back (two weeks after the operation) I was told that the cancer cells had been hormone receptor negative, which means that the drugs that people with hormone receptor positive cells are offered would not work to prevent the cancer from returning. That makes me feel a little vulnerable.
I was told that mastectomy would have meant no need for radiotherapy.
With wide local exision, radiotherapy is used to kill any cancer cells that may be left in the breast.
The decision is very difficult. However, please ask the breast surgeon what options they offer, and then trust your own instincts. If you instincts say now that mastectomy would be safest then it probably is the best option for you.
Best wishes,
Elena
Hi Annalyn
So sorry you have had to join us, but you will get loads of support from this site…
I was disgnosed with high grade dcis back in march and was given no other option other than a mastectomy, the area exceeded 5cms. I am now nearly 5 weeks post op skin saving mastectomy and immediate diep recon( they use your tummy fat and skin = tummy tuck)!!! Despite it being a long op 7hrs, i have made a fab recovery and have two great boobs and a very flat tummy. I have also required no further treatment, not even tamoxifen as there had been no invasion out of the ducts.
If you are considering mastectomy and immediate recon…www.optionsforbreastreconstruction.com is a good website to visit as is www.diepflap.com the type of recons available in your area will obviously dictate which you could have…the first website details country wide options!!
Good luck with your appointment tomorrow…and if you need any more info dont hesitate to ask!!!
Good Luck
Anna x
Hi,
Sorry you’ve had to join us.
I had DCIS in my left breast, throughout- the mammogram looked like someone had punctured it with a thousand pin pricks. I had a mastectomy and immediate reconstruction (DIEP), and a full biopsy of the removed breast revealed 12 areas, one was 11cm, intermediate to high grade. I didn’t have the option of anything other than a mastectomy. I have wondered how it started in my breast, whether 12 areas developed simultaneously or if one area triggered another. I’ll never know.
It’s your decision, you’re doing the right thing talking to other people and gathering information- please post again with any other questions.
Barbara xxx
Btw you have my sympathies re: core biopsies- I had a shudder when I saw those words in your post- wish someone had knocked me out with mallet before mine.
Hi everyone thank you for your support.
I saw the Breast Surgeon yesterday,they had a team meeting and discussed my case and feel that a WLE would be my best option as it is still at the intermediate stage. I have to have a wire localisation first,I am not looking forward to that,it means by breast being held in the mammogram machine again while they do the procedure.
They do give you a local anasthetic,but my breast hasnt recovered from the two core biopsies,I have a hard lump and purple and yellow bruises all over the breast.
They say its just the bleeding,but i am just hoping that the lump has gone down before they clamp it in the vice again.
It makes your eyes water just to think about it
I have to have the op on 2nd July,and if they get clear margins they will be happy,if not we will have to go for a mastectomy
All I can say is thank goodness for the mammogram screening,I had no idea that anything was wrong until calcifications were found.
Love to all
Pat
Wire localisation and bruising Dear Pat,
Welcome. I am 2 1/2 weeks post WLE with wire localisation for DCIS, so I hope my experience will help.
I also had core biopsy, but a friend I mentioned it to the week before told me to start taking the homoeopathic remedy, arnica, immediately, so that it would have built up in my system by the time I had the test.
I had the wire inserted just 4 days after the core biopsy, and the specialist was VERY confused, as there was absolutely no bruising at all from the earlier test. He had never seen this before. I continued to take it all the way up to my op and for a week afterwards, and had minimal bruising. The biopsy people are going to put it in their patient information leaflet. I am going to buy my friend a very big drink.
I used Nelson’s Arnica from Boots, which cost £3.79. You take two pillules 6 times a day and just let them dissolve under your tongue.
Wire localisation. It wasn’t very nice, but they didn’t need to clamp my boob as viciously for the wire as for the biopsy, so it should be easier this time. DO tell them you could feel a lot of pain last time - ask for extra anaesthetic and ask for an extra couple of minutes for it to take effect.
The other thing I did was something I usually do when I go to the dentist, which is to try and put myself into a ‘different’ space. This involves slowing everything down from a few minutes before the procedure until it’s over, focusing on my breathing and slowing it right down, not talking, putting my mind somewhere safe and warm, not focusing at all on what’s happening around me, just being quiet and focused inside. I have no idea where I learned to do this, only that it helps.
The op was actually easier and less painful than the biopsy. So much so that I totally overdid it when I came out of hospital. Don’t under-estimate what you’ve been through, because you will have been running on adrenaline. When it runs out, you’ll flop. So don’t make any plans, and do rest, even if you don’t feel like it. Now is the time to order those films you wanted to see, and ask for a personal DVD player for your early Christmas present to take into hospital 
Lots of good luck.
Heather
wire localisation Hi Annalyn / Pat,
I am pleased to hear that you have a date for the operation.
I, too, had the wire localisation. The wire was inserted about three hours before the operation. Yes, the clamping was very painful but, just when I thought that I could not bear it any more, it somehow became tolerable. I agree with Heather that it helps to try to think about something else, and to take slow deep breaths (except just for the second or two when you cannot breath because of the pain).
I did not feel the wire being inserted because the local anaesthetic was working well. It was fascinating to see the thin wire sticking about 12" above the breast. The surgical steel wire is so flexible that the doctor just curled it up and stuck a plaster over it . Then I did not even feel it.
It is excellent that you have two weeks prior the operation, this will allow the bruising to heal. Heather’s suggestion of Arnica sounds good.
Love and best wishes,
Elena
Hi everyone
Thank you Heather and Elena for sharing your experience of wire localisation.
I think my bruising is so extensive because I had to have two core biopsies in three weeks,I do bleed a lot.
I am a bit confused at the minute,the surgeon said I might be able to go home the same evening or next day,but the letter confirning my hospital admission said I will be in 3 nights.
I will sort it out when I go to the pre-op clinic on Thursday.
Another thing I will clarify is what happens after.
Most of the ladies with DCIS that have posted have had to have Rads post op,but this has not been discussed.
Love and best wishes to all
Pat
new DCIS Hi Pat
I am 4 weeks post mastectomy for DCIS. Recon was offered immediately, but I opted not to. This is a very personal decision and it just has to be right for you.
In my case it turned out to be the right decision, as the original 4cm
area that was detected turned out to be 8cm of intermediate to
high grade cells. Consequently they are now considering a course
of radiotherapy, ‘just in case’ even though none of the cells were found to be invasive.
I had never had an operation before so I was so scared, but it turned out to be fine, only ever had paracetamol. And was out of hospital in 3 days.
The thing that I have found difficult is the emotional side with the change in body image, but even that is getting easier with time and support.
I was never very image consious so underestimated the impact the
scar would have on me,couldn’t even look at the area for the first few days. Now can’t wait to get my falsee and buy lots of new underwear.
Good Luck
Helen
hospital stay Hi Pat,
These days, most surgical procedures are done on a ‘package’ basis to help with budgeting. Three days may just be the average needed, and therefore reflect the ‘package’ rate, so it may not reflect your own actual needs.
Good luck on Thursday!
Heather
Hi Everybody
I’m still finding it very difficult to understand how different hospitals treat DCIS. Some people are on Tamixofen some are not. Some people are offered radiotherapy and some are not. I had 15cm high grade DCIS with microinvasion and I have been given nothing but a mastectomy (and immed recon) so how can we tell what is the best treatment for any of us when the professionals seem to have different opinions.
Confused!
Beverley
Hi,
My name is Chrissie I am 49 and last year this happened to me - high grade DCIS of my left breast. I was scared to have a mastectomy because like you I wanted a quick recovery as I am neewly divorced, no kids no parents and my sister and brother live 250 miles away.
Anyway I had a wide excision first and when they tested the margins again and the shavings, I was told that the safest thing to do would be to have mastectomy. I opted for a reconstruction at the same time and had mastectomy and Latimus Dorsi flap (from the back) at the same time. It was a long op 8 hours, but within 6 weeks I was back at the gym.
I am fairly fit and sporty so my worry was that I would not be able to do horseriding, aerobics etc. although at first, I got very tired after exercising in the gym, I managed to keep going. The only thing I needed to watch is lifting weights ( I still need to be carefull here). On reflection I think this has definately beeen the best for me. I have met so many women that have had a wide excision for DCIS and ended up having to have a mastectomy following many months/years of constant worry. Of course if it spreads…
I did not need radiotherapy or chemo (obviously) but I would have had to have radiotherapy if I was to just leave it with the wide excision. Obviously everyone is different but that was what I did and I do not regret it one bit. I recovered very well.
Good luck hope this has helped!! Let me know what you decide!
Chrissie
PS i took arnica before/after the op ( a week before and during my hospital stay and 2 weeks after). I did not get one bruise. But check this is ok with your surgeon as some epople cannot take this.
Hi Chrissie
Thnk you for sharing your experience of DCIS surgery.
I told the the doctor that I want to go for the full mastectomy and I will have it done on 2nd July
I just want to get it over and done with,My cousin contacted me and told me that she had had a WLE 10 years ago and she now has invasive cancer in the same area.
I should only be in hospital a couple of days and will then be dischaged with the drains.
I am 67 years old and repeated surgery and tests at this age is not a good idea. I have heard of women going back 2 or 3 times and still not getting a clear margin so end up with a mastectomy.
I am not going for the reconstruction palaver either,a prosthesis will be fine by me,
I hope you are recovering well
Love Pat
Doctors differ… Picking up on Beverley’s point about how we can know whether we are getting the best treatment.
Following my diagnosis last month, I started to read about DCIS. I have access to my university’s database of medical articles, so I’ve read quite widely and from a number of different angles.
What I’ve worked out is that there is no absolute concensus about the ‘right’ way to treat this disease. There are two favourite options (mastectomy, or WLE with radiotherapy) but there are many opinions and schools of thought around and outside of these.
For instance, there are specialists who believe that not all DCIS will become invasive. This comes from a study of women who had their breasts examined after they’d died, and who had DCIS which had not developed. So, there is a school of thought as to whether mastectomy or WLE should be automatic. or whether it would be more sensible to monitor and do nothing unless the DCIS was developing quickly, especially if biopsy shows low grade.
There are numerous studies relating to recurrence, most of them taking data as far back as they have records for to track the ongoing health of women treated with mastectomy, WLE, radiotherapy etc. Other factors mean that these studies vary in how they are arranged, so their results are not completely consistent, although they are broadly comparable.
There are studies looking at the incidence trend, which is falling, and how much of that fall is due to reduced HRT use, and how much due to screening programmes.
There are similar debates about the use of hormonal therapies at different ages and stages of women with bc.
I have come to the conclusion that there are no proven right answers, only informed opinions. Overlaying that is the personality of your surgeon, eg how risk averse or laid back they are as a person.
When you are referred to a specialist, you have to decide whether to ‘buy in’ to his or her opinion on the available data, and his or her approach to your case, which will vary with the opinion of the next specialist along.
This is just my viewpoint. I guess the answer is to try to widen the discussion with your specialist, and ask: ‘why are you recommending this and not that in my case? Please tell me a bit about how you came to the conclusion that this is the right approach for me.’
Cancer is a sensitive subject and scares the bejesus out of many people. I think specialists tend to only tell us what they think we need to know - but that’s not to say they *wouldn’t* explain more if we were to ask.
Hope this helps
Heather
Hi Heather
Thanks for replying to my post. I did ask my surgeon why I was not prescibed Tamoxifen and his opinion was that I would be at higher risk from the effects of Tamoxifen than from my cancer returning and he doesn’t prescribe it for DCIS. Since then I have researched it and when I saw the risks for endomitrial cancers on Tamoxifen I have come to the conclusion he was right. Just wish the risks on Tamoxifen weren’t there because I would like to think I was haveing everything to stop BC coming back.
Beverley
I’m three weeks out of my operation for left breast mastectomy after being diagnosed with high grade DCIS.
In the tissue they’d removed, they found more calcifications with a low to medium grade count, but nothing in my lymph glands at all, so I do not need chemo or radio.
They tell me it depends on my hormone count as to whether I will need Tamoxifen or not. Personally, I’m hoping …not…because I don’t fancy having to take that for X number of years.
I went through Biopsy, WLE, but still ended-up having to have a Mastectomy and that was the results of two different specialists, from two different hospitals, so I did ask around first.
I’m ok though and getting on with what has been chucked at me. Life is for living. I decided when this all kicked off, I could do one of two things, I could either sink or swim, I’m swimming.
Linda
Hi Annalyn,
I had a grade 3 tumour. size 3cm in diameter. Initially I was given 4 treatments of fec to see if the tumour would shrink. It did, practically to nothing. They decided to put in a tumour marker before my 4th treatment and could hardly find the tumour. However when wide incision surgery was carried out they found that I still had lower grade cells in the area from which the tumour had shrunk, and they hadnt managed to secure a clear margin.
I had a sentinal node biopsy done at the same time which showed I had cancer in 3 nodes. I returned to hospital the next week fot an axillary clearence and removal of some more breast tissue.This time my surgeon obtained margins which he was happy with and I was able to continue with my treatment.My breast is scarred, less full than the other with nipple retraction where he scooped out the tissue. I kind of look on my breast now as “something to put in my bra”.
I did discuss mastectomy with my surgeon but he assured me that studies had shown that with my type of cancer, my size of breast , position of tumour etc the long term outcome following mastectomy or wide incision was statistically equal. I trust my surgeon, and he has been frank with me from the start. While there were times that I questioned and perhaps doubted that I was doing the right thing in not having a mastectomy, I now feel that whatever the outcome life is too short and precious to waste negative energy on worrying now about this as my consultant is the one with so much more knowlage than me.
Im sure that with the help and guidence of your doctor and breast care nurses etc you will come to a decision that you feel happy with, and that you can live comfortably with. Wishing you good luck , and thinking about you.
Wilmax
Hi - this site is just what I need at the moment. Thanks for sharing the above.
I had a mamogram on Dec 17th, my core biopsies the week before Christmas and my diagnosis of high grade DCIS on Jan 3rd. I had a mastectomy + sentinal node and 2 other node biopsy on January 18th and was at home (with 2 drains in a carrier bag ) on Jan 20th. Diagnosis dcis confirmed and no further treatment offered. Only porblem post op was the fluid filled chest wall which leaked for a month post op.
I went back to work (graduated return) on 6th March and full time 5 weeks later. Initially felt great but now feel sad, brain truned to putty, unable to make decisions or process information in or out.
Was told surgery took everything and wouldn’t need radiotherapy or Tamoxifen. Although I’m glad about that am also feeling a bit vunerable. What if I should’ve had extra treatment?
Is this a familiar scenario to anyone?
Hi Judithann
I think first of all people get really confused on DCIS. If you look at the survival rates for DCIS you will see that there is virtually no difference between having a mastectomy versus WLE and radiotherapy. If your nodes were negative, then it is highly unlikely that you will get a recurrence. This is why a mastectomy without radiotherapy and without tamoxifen is successful. The side effects of both radiotherapy and tamoxifen would outweigh any potential benefits so are not offered for DCIS.
I had DCIS and had wle and radiotherapy, no tamoxifen. I only had 13 sessions of a low dose radiotherapy compared to ladies who have invasive cancer. I too worried initially that i had not had much treatment but now I have researched the effects of chemo and tamoxifen, I am relieved I didn’t need it and am perfectly happy with the treatment i have hadt. As i said, DCIS is a funny old thing - it isn’t invasive cancer and as such doesnt need lots of extensive treatment, but on the other hand, it is not benign.