Diagnosed with high grade DCIS today

Hi got confirmation today with high grade dcis, need to have sential node biospy, next week. How likely is it to show positive. Feel totally devastated. Any advice :-((( mastectomy and reconstruction aswell.

Hi Hay, am sorry to hear that you have been dx with DCIS, Surgery for DCIS typically doesn’t involve removal of lymph nodes from under your arm because it’s a noninvasive cancer. The chance of finding cancer in the lymph nodes is extremely small. If tissue obtained during surgery leads your doctor to think cancer may have spread outside the breast duct or you are having a mastectomy, then a sentinel node biopsy or removal of some lymph nodes may be done as part of the surgery.
Here is the BCC publication regarding DCIS ,which you may find helpfull, and it may also be a good idea for you to give the BCC helpline a call too to talk through any concerns you have , they are realy very good ,and will be able to answer any questions you may have.
Please try not to panick, (know its hard not to) it is a huge shock when we get a Dx , but “DCIS is a very early form of breast cancer, where the cancer cells have developed inside the milk ducts but remain ‘in situ’ and have not yet developed the ability to spread outside the ducts into the surrounding breast tissue or to other parts of the body .” therfore the chances of haveing a positve SNB are extreamly small.


All the best to you
Big Hugs , Linda x

Hi Hay, sorry you’ve had this news today, waiting for the full diagnosis is the worst part. Try to stay positive, it is unlikely that anything will have gone into your lymph nodes; it sounds as if you’re getting checked out thoroughly before they do the surgery so that they know exactly which surgery will be the best treatment for you.
Four weeks ago, I had a mx and reconstruction. Before the main op, I had a sentinel lymph node biopsy as a day patient, (They removed 3 lymph nodes). Thankfully, my lymph nodes were clear, so I had the mx and reconstruction on 15th Oct. Often with DCIS, the mx is the only treatment needed and I am luckily one of those cases. No chemo, Rads or anything like tamoxifen. A month on, I’m getting back on track, just started driving and doing my physio exercises diligently.
I was really scared, but now, just 1 month on, am in a completely different place. Stay positive and strong. You will get swept along with the treatment process, once your diagnosis is thorough and complete.
Sending you every positive wish and big hugs, hang on in there,
Loubee -x-

Hi Hay
Sorry it is high grade DCIS - as you say next step SNB - it is just a precaution - I had it a week before my mx and as with Loubee it was clear (4 nodes removed) and I had mx with immediate reconstruction. No need for chemo or rads and no need for hurry either - if you need a breather say so and they will delay the op - I personally wanted it out of the way and dealt with ASAP!

Have you been given all the literature to help you make a decision on what reconstruction you want? Don’t forget any questions the helpline here is great (and free from a landline) or you can ring your BCN.

It is scary I know but you can do it - just focus on the fact that it is not invasive and you can get rid of it with just one operation.

Feel free to PM me if you want to.

Best wishes

Liz x

Thanks girls for the replys it all helps. After a rubbish sleep went to have bloods done. Feel okish, I do hope my nodes are clear too. What is the process and treatment if positive. Is it very painful SNB and how long to recover. Will I go home same day. Thanks so much for making all this a little easier. Love Emma

I had the lymph node microbubble test first (performed at Maidstone - clear) and then a week before my left breast mastectomy w/reconstruction. I had a day op - lymph node biospy - one node removed and that proved also to be clear as well. I’ve used a electric razor to shave my underarm ever since because of the slightly raised scar and it was what my oncological breast surgeon recommended.
Luebee is so right, the process does follow along and you go with it - not much choice there - really. You will be home that day, and will feel better within a few days after the general anesthetic gets out of your system.
Big hugs and love to you Hay123 !

hi hay, ihad snb 25 out of 30 had cancer. had snc cancer from breast removed, chemo,radio and am now on tamoxifen. my advice to you is be strong and positive. xx

Hi Hay!

I was diagnosed with High Grade C5 DCIS and ended up having a bilateral mastectomy. I chose to have my healthy breast removed as there is family history. Had my mx on Aug 24th this year with temp implants. Following this I had a severe infection in my left breast and ended up back in hospital for 10 days and having an implant removed. I am due to have DIEP recon next year after I’ve lost 4 stone!!! Haha! Never straight forward with me!

I had 4 nodes removed and there was 0.7mm of node effected but they didn’t feel it was enough to warrant treatment. I am doing really well now and getting stronger by the day, in fact going back to work in 2 weeks!

Please don’t be scared it really isn’t as bad as you think it will be. The actual mastectomy went so well and I was fit and driving within a couple of weeks.

If you want to PM me at any point, then please do!

Take care
Viv xxx

Hi Hay123. have sent you a reply but trying again 'cos don’t thing it went to you. I too was diagnosed with DCIS high grade 5cm. On 20 August I had mx and immediate reconstruction, so nearly into my 14th week. I too had SNB one day op. had 4 lymph nodes removed and results all were not invasive. Yipee!! I was so scared of chemo because of losing my hair. Mastecomy wasn’t as bad as I thought. I had 4 drains and was in hospital for 8 days. They wouldn’t let me home until all drains were out. My reconstruction choice was LD flap. Think I made the right decision for me because when I woke up I still had my skin from my old boob and so had a bump with dressing so mentally felt soooo much better and still felt normal! . It feels like you’re wearing a straight jacket at first because of the muscle coming from the back bought to the front making the new boob also had a small implant to complete the shape of boob which matches my other boob. Do exercises 3 times a day which is extremely important (takes about 10-15mins each session). Couldn’t do anything when I came home but sleep, so had help with cooking/cleaning/washing and ironing. But your body will tell you what not to do. I’m a lot older than you, I’m 66. Although you have 3 young children … you are much younger and will bounce back in no time. Just don’t push yourself too far. Masses of good luck to you Hay123 and big hugs. xxxx

Hi thanks for replys
40watt did you have DCIS has you said you had 25/30 nodes positive . They seems a lot as DCIS is meant to be not invasive.
Viv, it’snice to know you are doing ok, it’s just a Lot to take on. I’m thinking of having breast reconstruction with implant and strattice mesh. Any advice on this would be great too. If any ladies have had this new procedure.
Thanks capital for your positive thoughts too xx

Just take each day as it comes and try to stay strong. I have found that I feel a bit mental with it all now and as people think I’m okay again now, I’m still walking around with no boobs but with the wonders of my prosthetic (nicknamed Sandy, don’t ask!!!) they don’t really know what goes on underneath.

I don’t know about the implant and mesh but make sure you have any questions ready for when you go to see the plastics lot. They are really really lovely at Salisbury. Where abouts do you live, I am in Poole?

Viv xxx

Hi viv I’m live in Essex. My breast specialist would do mx and mesh reconstruction. He feels as I have a 1 year old it’s less recovery time.
3 hours surgery and not tummy or back operation. So glad you are positive, your right you can only take a day at a time.
Do you have kids??

Yes the recovery time related to your ‘real’ life is very important. I have 14 year old twin boys so by the time I have my recon they will be nearly 16 so they will be primed and ready for caring for me! They are great kids and very caring. They have been brilliant throughout the whole time and one of them even came to the plastics appointment with me. He was horrified but wanted to know every little bit that they are going to do.


I have 3 boys 13/11/1 my two oldest are gems too xxx

Sweetie, keep in touch, you will get through this I promise.

When is your op and did they tell you how long you would have to wait for your results?


Hi viv thank u, node biopsy next Thursday, no date yet for mx. They said 2 week wait for SNB results. Had a good night sleep but woke up this morning. Worring about it being high grade and in nodes again! Silly I know xx
Hope u r ok too xx

Hi Hay,
You’re not being silly worrying about your diagnosis, that’s normal - don’t feel bad or gulity for worrying. I have 2 children, aged 14 and 10, so they were old enough to know that something was wrong, (although not to push round the vac, it seems!) It is difficult to keep up a, not cheerful, but positive face, in front of them. At night, I downloaded a newspaper app onto my phone & lay there reading: I didn’t have to get up or wake up my husband either! For me, that beat counting sheep or reciting nursery rhymes backwards!
This website has some wonderful documents that can be downloaded as PDF’s about talking to young children and how to cope with your diagnosis and surgery. Also, I used the phoneline - it was a godsend, being able to talk to people who had been through it.
Stay focused, this is just a period of time that you have to get through. It is normal for your emotions to be all over the place. You don’t have to explain or justify how you’re feeling to anybody. If you can get a nap during the day to supplement the sleep you’re missing out on, take it: you’ll need your strength for your operation. If family, friends, neighbours offer help, take it: you’d gladly help anyone in the same situation and other people like to feel useful -that they’re doing something.
Sending big hugs, just get through the next few weeks.
“We’re like a teabag,
We didn’t realise how strong we were until we were thrown into hot water.”

Hiya, don’t worry about how you feel, you are allowed. You’ve just had a shock! I know what you mean about having to keep a brave face on things, have a good old cry in front of the kids if you need to. Once they and you know what’s happening, you’ll feel much better. All this waiting around is the most difficult part! Be kind to yourself, everyone around you will cope just fiine!

I did my first bootcamp in 6 months today and it nearly killed me. I’m so glad I did it though, it’s all about the confidence. Was fun though and great to be back will such lovely people! I have to lose 4 stone before I can have my recon next year so I’m working hard.

Watching Strictly and X-factor tonight in my pj’s!!! Hehe!


Hi viv Well done u, your positivity is lovely. I had many tears today and the last 8 weeks. They keep rolling. But u r right you feel better after. Same here watching strictly and xfactor too. We know how to live :wink:
Enjoy your evening love and speak soon. Put your feet up you deserve it xxxx

hi again Hay

if its purely only DCIS then it cant be in the lymph nodes… that is the difference between invasive and insitu BC… in situ means its contained within the duct and therefore doesnt have the ability to go to the lymph nodes… only when it becomes invasive can it have the ability to go into the nodes… very occasionally they find a tiny cell of invasive within the DCIS and this is why they will be doing the SNB… but if you already had surgery and the path was DCIS then its very very unlikely taht a spec of invasive BC smaller than the pathologist can detect would have travelled to your lymph nodes… even with tumours detectable on patho its very unusual to have small tumours under 1cm in the lymph nodes and even rarer to have positive nodes if its under 1mm.

but even if it was in the lymph nodes this is still classed as early breast cancer but may just mean your treatment might be a little differnt to what was originally planned but not always.

love and hugs xxxx