High-grade DCIS?

[SunnyDolly]

Hello all,

I’m posting here for any advice and stories. I’m 40 and on Monday after biopsy results I’ve been told I have intermediate-to-high grade DCIS with comedo necrosis. I have a lumpectomy booked in 5 weeks time and have been told the three outcomes of this.

My head is candyfloss, it’s just all so new and so unexpected and I’m feeling really worried. Has anyone been in this scenario before with DCIS, I’d never even heard of it before Monday. Trying to stay positive and hopeful.

Hi I have been diagnosed low-intermediate 7mm dcis. I had my wle last week. What were the three outcomes you’ve been told? X

Hey, so sorry to hear that. I’ve got 11mm intermediate to high grade DCIS. Option one, surgery removes it all then radiotherapy. Option 2, not good enough margins and need more surgery (honestly think I’ll just ask them to remove the whole boob if that happens!) and option 3 as it’s high grade there’s a minor chance it is already invasive. I don’t like thinking about that one at all. Trying to just keep everything crossed for option 1!

How are you feeling? It’s such a lot to get your head around isn’t it.

Yes! I had medium to high grade dcis in 2019. I also had a lumpectomy and radiotherapy. Lumpectomy was a misnomer for me as half my breast was removed and rebuilt.

In hindsight I wish I had had a full mastectomy - on both sides and reconstruction.

It is very good news that this DCIS has been picked up so early. The prognosis is excellent.

Thank you so much for commenting! I’m worried about my other breast, only the one I had symptoms with has been checked this entire time. I’m going to mention that to the cancer nurse on Monday. Part of me honestly would love to just have a full mastectomy right now! I’ve had my kids they’ve done their job haha.

Don’t let the nhs consultants and nurses persuade you against your gut feeling.

Every individual has a different cancer journey.

I can only speak to my own experience. I regret not going for a double mastectomy. I felt that I was persuaded into trying to keep the breast - but the operation ended up being long and the recovery long as the surgeon basically cuts out the cancer (with good margins) and then rearranges everything left - including the nipple to rebuild a new boob. The ‘new’ boob is still sore as the large amount of scar tissue ended up being fairly large.

knowing what I know now - I would have found it easier to have two new boobs - completely. Avoiding the need for radiotherapy too. It would also have given me peace of mind going forward.

Please try and feel positive about a dcis diagnosis - meaning that / it’s the very best breast cancer prognosis you can possibly get. Almost everyone recovers well and lives as long as anyone without a DCIS diagnosis. It is now a process - getting the cancer cut out - with very good margins and moving forward with enjoying your healthy life.

Hi again. It’s still early days for me with regards to the surgical procedure (only last week), but apart from a small skin tear I think it’s healing fine. Don’t be worried about the actual procedure, post op I feel v comfortable but definitely do feel more tired. The nhs breast care physio said the healing from the wound depletes energy.

Like you, I’m hoping for option 1, the initial Surgeon Consultant I saw (the head one) said it would just be an op and probably tablets. On the day of surgery one of his team did op and told me radiotherapy would most probably be given, which was news to me, and of course the dreaded chance it’s invasive.
I’m extra twitchy as my mum died from bc agreed 59.

I had my lumpectomy six weeks agoy DCIS was over a 6.5cm area so a quarter of my breast was taken and then rebuilt using a flap from under my arm. The margin wasn’t clear on one side so they then took another 8% which is the absolute maximum that can be done with this procedure.
it has been tough going physically but I can now feel myself coming out the other side. I have one more week off work.
Saw the oncologist today and he confirmed five sessions of radiotherapy. Apparently NICE guidelines are that hormone therapy is only used if you don’t have radiotherapy. He said that the reoccurrence rate for DCIS is 20-25% without radiotherapy and 5% with.

Thanks so much for sharing this. Wow the surgery sounds quite hardcore doesn’t it! I’ve got lots of friends and family lined up to help with school runs etc thankfully, so should be able to really rest up. Mine is 11mm so I think they’ll be cutting out quite a lot.

Good luck with your radiotherapy - when does it start?

Thanks @tramtracks I will definitely ask if the other boob can be looked at for my own peace of mind. It’s really bothering me! I’m so glad you’ve recovered so well from this, and like you say I’m holding on to the positivity this has been caught so early.

Really glad your op went well @Peachslice when will you find out the results of the op and if they’ve got it all? I feel so anxious at the moment too, I really share your fears there. I wish I could skip to the surgery, it’s a horrible wait.

@SunnyDolly My results are 2/9 so I’m hoping they should definitely be back by then. Chatting on another forum and someone is needing a re excision, though one of my clients had it in January, and first op successful and she’s not having radiotherapy.

Oh fingers crossed. My surgery isn’t until 12/9 but I’m on a cancellations list to maybe get in a little sooner. I just need to keep myself busy! I made the mistake of falling in to a Google black hole last night and really can’t do that again.

That is no problem. Not sure about timescales as they told me it is backed up at the moment. Hopefully in the next three months.
With regards to looking at your other breast, I would have thought that they would have looked at both during the mammogram?

I had breast cancer in 2019 and they also found extensive DCIS.
About your other breast, have you got an MRI before surgery? I had lots of scans and MRIs so presumably that would pick any other suspicious lumps

@Tearsofthemushroom @Pippsy no nothing, only the breast I was having the pain in was checked (ultrasound and MRI) nothing at all with the other one. I’m only 40 so it wasn’t at a general mammogram check, I went in with symptoms. I’ve read somewhere that if they find it to be non-invasive that’s why as it won’t spread but it’s just still really bothering me!

In that situation I would also want the other breast to be checked! If anything was found it could change your decision-making. If they refused I would consider seeing if you could go private.

My love and heartfelt wishes to you. Every month that goes by is a month more cancer free. You will feel completely back to normal very soon. Cancer has an upside / it gives you a new perspective on what really matters. So book those trips - meet your friends, make time for those that matter. :)

Yes, I’m definitely going to mention it on Monday. I see the cancer nurse then when I go back in for my pre-op. I just at the moment feel like I had a A LOT of information given to me on Monday and it’s really taken a while to process it all. I do have private health via work so a private mammogram could be an option for sure. Thankfully the hospital I’m at doesn’t appear to have long wait times (I’ve been seen quickly so far) so fingers crossed they’ll get me in for another mammogram before my surgery date.

I hope it all goes well for you. I found Breast Cancer Support (UK) on Facebook really useful to hear what other people are experiencing.

Mine was over 3cm but on the side, near the arm. I didn't have a reconstruction. Nobody notices really, one boob is smaller than the other but it's not obvious except when naked. Where is yours?
(my lymph nodes were clear, I had another operation to clear the margins which was annoying, then radiotherapy).

@Tearsofthemushroom thank you, I’ll look them up!

@Onthewaytothemountains mine is on the side too and its quite high up, I was manoeuvred in to some odd positions for the mammogram! It’s close-ish to my armpit. I’ve no current plans for reconstruction either, I’m not married to my boobs at all anymore! How soon do you find out if they’ve got a good margin post-surgery? I guess it probably differs place to place.

@SunnyDolly Yes definitely speak to your breast care nurse and ask them can you other breast be checked, you would have thought for completeness and comparison it would have been, but ask them.
Yes I know what you mean about Google, you go down a rabbit hole where I started reading about all the different types of breast cancer and even programmes about death which isn’t healthy, i frightened myself silly one night when I thought I had a rash on affected breast and never noticed it, but thankfully it went after I cooled down a bit. The woman I know who had the op in January said she never googled anything and it helped her.

I found out after about 2 weeks. I went private as I had insurance, but the consultant could only see me on a specific day of the week so might have known the results for 6 days before seeing me.
My scar is down the side of the boob, only noticeable if in a bikini really.

I’ve no current plans for reconstruction either, I’m not married to my boobs at all anymore!
This is a great attitude and I think will help your recovery.
I felt the same and had a long discussion with the surgeon about mastectomy. She was adamant that the long term outcome would be the same so I went with lumpectomy. They took 3 lymph nodes which were clear and got clear margins but many people end up with a second operation because they don't get clear margins.
My breasts were small to begin with and are now a bit lop sided but not noticeable. Because of the mangling about in surgery I do have some pain in that breast six years on.

The private surgeon wanted me to have a reconstruction because he said it would look small and wizened in 10 years time. It doesnt! 12years on it's just the same. I think he just wanted the money, I guess that wouldn't happen in the NHS.
There was no way I was going to have a 3rd operation on the breast especially just for cosmetic reasons!

I had my first ever mammogram last year at age 50. They found high grade DCIS and my initial thought was let’s just chop them both off. Once I’d had a chance to research I realised that the odds were not really any different with a lumpectomy I went for that.

The first lumpectomy found an 12mm invasive cancer and I didn’t get clear margins.

The second lumpectomy found DCIS right up to my chest wall so they took as much as they could. My margins were never going to be clear even if I’d had a mastectomy.

I had radiotherapy to clear up any remaining cells and was advised that I could go on tamoxifen. I declined.

So for me it was a little bit different to their initial diagnosis of 5mm of DCIS but it was all absolutely fine. I’m pleased I didn’t opt for a mastectomy as I get yearly mammograms and I wouldn’t have avoided radiotherapy anyway. So for me everything worked out ok and I’m pleased with my choice.