Newly diagnosed with High Grade DCIS

Hi there

So sorry to read you're in the same boat, roughly speaking. But it's not all bad news – you will probably have been told the same thing I was, that this is treatable and you're not in danger.

But, the treatment is far more invasive than the cancer. Here's where I'm at, if it helps in any way.

I've been diagnosed with 4 x 2.5cms low/intermediate grade DCIS. I was first at Charing X and I had a second opinion at the Royal Marsden. Both concluded that mastectomy with immediate reconstruction is the best option to ensure I'm cancer free as quickly as possible. I'm small breasted (34C) and a lumpectomy would take half my breast away.

The Marsden favoured a DIEP reconstruction, which is what I've opted for and will be having surgery on Oct 5th.The DIEP appeals because it's my own tissue (tummy tissue) and it will change in sync with the rest of my body. I can opt to have a nipple reconstruction and/or tattoo at a later date if I choose. There are two downsides to the DIEP. One, the surgery is about 8 hours long, that's 8 hrs under anaesthetic, which is really daunting. And two, the recovery time is much longer – and I'll need to take 6/8 weeks off work. I'll be in hospital for 5 days and will have difficultly walking upright for the first two weeks.

If you choose to go down the DIEP route, you'll need to have a CT scan on your abdomen to identify the location of your blood vessels, essential for the intricate microsurgery. And, you'll be a better candidate for this type of reconstruction if you've not had any abdominal surgery before. You'll then be assigned a Breast Surgeon and a Plastic Surgeon. During my surgery, the two surgeons will be working simultaneously, one on the breast and one on my tummy. It feels like I've volunteered to be butchered in my sleep, but I'm trying hard to just focus on the fact that these people are experts and they take pleasure in perfection and just think about that moment I wake up and can have my first sip of tea.

I'll also be having a sentinel node biopsy, and there is a possibility my mastectomy will be nipple-sparing. But personally, it would be a nice to have, but I'd rather be completely cancer free than have a nipple that might need to be removed a few weeks later if the tissue pathology isn't clear.

Is your diagnosis following a mammogram/MRI/biopsy route?

And, have you been advised about a sentinel node biopsy, and the small risk of lymphoedema?

Like you, I won't know whether I'll need further treatment, possibly a three-week course of radiotherapy. I'll get my final results about 10 days post-surgery.

I'm more than happy to try and answer questions and share my own experience with you.

Good luck with your decision making.

All best

Fonty

I see you have already got some good info and advice from . I have just popped in to say a warm but weird welcome to a site we didn't know existed and never wanted to find

But you have found here. And what you have found is a site filled with great people living this poop known as cancer. It is filled with non judgemental advice and support.

All your questions will find answers and remember no question is wrong or silly, so ask away. And whilst I am on right or silly that also means emotions. Whatever they are then that is it. You wont get a manual with cancer which is difficult so here will help.

One good thing is that everyone is treated as an individual through treatment and though we share many side effects (SE's) they can be slightly different. In saying this I suggest you don't Dr Google as you may frighten yourself by reading out of date material,Here all info is fresh off the press as it is mostly from those living the poop.

Until you have a clear plan of treatment keep posting and answers, support and advice will be here

Make you the priority in your life for now (difficult if you have a family I know) but necessary to make good progress physically, mentally and emotionally. And if you can accept practical help from people

Leolady56

Hi

If it's any help, take a look at my profile by clicking on my name.  I had 5.4cm of high grade DCIS (as well as a 15mm grade 2 cancer) and you can see timescales and treatment I received for this diagnosis.  I didn't need reconstruction due to position, but due to the whopping 8cm taken out I have a huge dent which means I have a stretched nipple/pointing outwards and can have reconstruction if I want later.  Despite this, I look no different in clothes / in a bra - so may well not bother as I'm loathe to have unnecessary operations.

Kindest wishes,

Thanks, my head is spinning.  I have a lot of decisions to make.  

Hi Fonty,

Thanks for sharing your story, your a little further along the process.  Your description is so much more informative than I have yet had.  Thanks.  I too would prefer using my own flesh rather than an implant.  Not sure if that’s possible for me as I’ve had two c-sections?  

Would be keen to touch base with you after your procedure. 

Hope all goes well. 

Hi Leolady55,

Thanks for your lovely message.  I’m trying to take things one step at a time.  Although my journey is just starting I’ve absorbed so much factual information on-line it is mind numbing.  To be honest it is nice to make contact with real women who can understand the emotional side of things.  

Hello,

sorry to hear your news. I was recently diagnosed with high grade DCIS and had surgery 4 weeks ago. So far, based on what I’ve been through, i think the diagnostic stage is worse than the surgery. My brain went crazy and to all sorts of awful possibilities. It took  3 months for me to get final diagnosis and you realise there’s always a caveat when you get good news that some other test will be due. So, do your best to stay strong now and try to live in the moment of what you know to be true, not what could be.

i had 9cm dcis removed plus 4 lymph nodes which were clear. I do need further small op to get clear margins and radio next. Given i’m large, they did a reduction on my good side (which i’m actually quite enjoying!) and matched the other side up with some crazy rearranging and lipo.

my recovery was hampered by an allergic reaction to the glue but good now and it was only the first few days which were particularly painful.

I should stress though that I feel a million times better now than when I was where you are just waiting on results and not knowing so hopefully things will improve! Still a road to travel but further down it every day.

Good luck!

x

Hi

I’m really sorry that you have to be here but it’s a great site for info and support. You have had some really good info and advice from the others.

I was diagnosed with 4.5 cm of high grade DCIS last year and has a mastectomy and immediate reconstruction by DIEP just before Xmas. I went through all sorts of emotions prior to surgery, trying to work out the best option and then I was terrified about the surgery. It is all such a lot to take in at once.

My op went very smoothly. I was hospital 4 days but at home recovery was slow. So long as you have your pain relief to hand it’s fine but I couldn’t stand up straight for weeks and I was so tired. Others have had differing experiences with how quickly they straighten up. The abdominal surgery is the worst bit. However, now I’m pleased I went for a diep as it looks so natural. I know there are many lovely ladies here who are quite happy with just having a mastectomy and going flat but I really couldn’t. I went on holiday this year and I was back in my bikini and feeling completely normal (and with now a very flat tummy). If you can and you want to have reconstruction do have the diep as it gives a great result. It is a big op and don’t expect to be running around normally for quite  awhile afterwards but life will go back to normal.

i am awaiting nipple reconstruction and a bit of tweaking to the side. 

Any questions please ask. Hope this helpsXxxxx

Hi Moresleep,

Thanks I’m so pleased that  your procedure went so well and your happy with the results.  It’s reassuring to hear that your back to feeling completely normal and comfortable enough to wear a bikini.  

Good luck with the nipple reconstruction and tweaking.  Is this usually done separately?  x

Thanks Rosie75,

Glad your on the mend.  I have had 4 different biopsies since first one in late July and am still awaiting results on the last one.  I’ve found the waiting difficult.  It’s great to hear that it gets easier. x