newly diagnosed

Hi there

Mine was an invasive mucinous carcinoma and was 3.1mm so nearly a cm bigger than yours. It was successfully removed with clear margins so I’m sure they will be able to do the same for you. It’s not the smallest but certainly a long way from huge - I know any lump seems huge when it’s yours though!

In situ does indeed mean it’s not invaded other breast tissues and, as I understand it, won’t be anywhere else in your body as it is contained within the milk duct.

I’m sure they will be able to put your mind at rest on Tuesday. If you can’t take anyone with you ( as so many of us haven’t been able to due to COVID) perhaps record the appointment with your phone so you can listen back later. I know I had to email the breast cancer nurse afterwards as I hadn’t really taken everything in properly!

All the very best going forward 

Hi Rakehill

A very warm welcome to the online community, though sorry you find yourself here.

As Mollusc has already reassured you, the in situ bit does indeed mean it hasn't spread. It's considered very early stage. 

As for is it big - well I guess everything is relative. If it helps, my tumour wasn't in situ but was 52mm - some people's are bigger than that. 

I know it must be a huge shock to have had this diagnosis and the waiting really is so hard. I know you are looking for answers about what happens next, and I'm sure, wanting reassurance. None of us can really predict what your treatment plan will be, because every case is different. But we can tell you our experiences to help reassure you and hopefully someone who had DCIS will be along soon.

As for me - it turned out that I had 3 tumours in my breast - the main one and 2 "satellites" - the cancer had also spread to my lymph nodes. I had a mastectomy, all my nodes removed, chemo and radiotherapy and am now on hormone therapy. My diagnosis was nearly 5 years ago now and I am currently cancer free and getting on with my life.

We are a large and friendly group of people here who all understand just how you are feeling and we are here to help you through this one step at a time. We are here for whatever you need. Let us know how you get on Tuesday.

Hopefully someone with similar diagnosis will be along soon

R

Hi Rakehiĺl

I'm sorry about your diagnosis I too was diagnosed with DCIS in October following the removal of what they thought was a papilloma or benign mole like tissue.

I had a second op in November to remove the area with a good margin. I am now awaiting a course of radiotherapy on 8th February. It will be for a week and then I'm on monitoring through yearly mammogram. 

As you have already heard everybody's treatment plan is formulated to their individual circumstances. Just ask lots of questions until your comfortable you understand what is going on and why.

If you tap on my name you should be able to see my journey so far.

Prognosis for DCIS is excellent but it doesn't stop the worry or the shock of hearing a diagnosis nobody ever wants to hear.

Just take the support where you can and just go with the flow. 

Stay safe

Debs

Hey, 

im sorry to hear what brings you here.

when I was diagnosed I had a similar sized lump on my left side that was fairly near to my nipple and I decided to go for  a mastectomy with delayed reconstruction - I had the choice but wanted to be extra safe and due to the location decided to get rid - surgery is a personal choice but I definitely preferred a mastectomy and reconstruction in the same operation- as I personally found delayed hard. 

So I had chemo as a preventative measure as I was 29 to safeguard any potential cancers anywhere else followed by radio, but now some trusts don’t do radio if you’ve had a mastectomy now - as it’s shown not to have any additional benefits. Not sure if this is different across the country or not.

but we are all different with so many types a variations - it will depend on you and what they think is best. I followed the doctors advice and did what I thought was best.

good luck - I can’t remember if I was dcis or not but mine hadn’t spread with clear nodes.

sending positive vibes.

Hi thankyou all so much for taking the time to reply to me. My diagnosis came on the back of a referral for something else. I’d noticed a line beneath my right breast that I felt hadn’t been there before. My GP felt it was nothing and I had no lumps bumps etc but as I was concerned it was different for me she referred me. I was mammogrammed NYE and devastated when I was told, we believe it’s a cancer, then she said but it’s nothing to do with what you came with. In the process of looking at that we have found the DCIS that would have remained undiagnosed until my next mammogram. I’m just 52 so 3 year screening is something I have. I’ve laughed as some people have said your so lucky they have found this so early. I don’t feel lucky but I know what they mean. The biopsy confirmed the DCIS and I know the journey now starts. I will update after Tuesday when I guess I will know more. And all your stories / journeys / words lift me up with there positivity - Thankyou 

I was referred to brrast clinic after the GP thought I may have a breast abscess because it was hot, painful with a large lump. They say its a coincidence but like you I knew something wasn't right but never thought it was cancer.

Those who say that we are lucky clearly have never been diagnosed with cancer.

Good luck with your appointment. 

Stay safe

Debs 

Hi Rakehill,

I'm sorry to hear of your diagnosis.  I was first diagnosed with low grade DCIS at my fist 50+ mammogram.  I had surgery and radiotherapy and have been well ever since.  I've recently had another routine mammogram which showed high grade DCIS in the other breast.  This time I have had a WLE with mammoplasty and uplift to try and match my breast that was operated on 12 years ago. I'm waiting for radiotherapy which will be over 5 days.  Both times I didn't have a lump and would never have found it myself.

In situ means it hasn't spread outside of the milk ducts. It can often be pre-cancerous.  As long as the surgeon can get a clear margin around the area you wont need further surgery (as in my case).  I don't think anyone can say it definitely hasn't spread, but in my experience it's very unlikely.  Once all the DCIS has been removed a course of radiotherapy is usually recommended.  Of course everyone's treatment plan is different as it will be tailored to suit your needs.  

I couldn't take anyone with me for my appointments but the breast care nurses are amazing.  I had two with me at every appointment and one took notes for me which I thought was a brilliant idea.  You will have access to the breast care nurses day and night, if you're at all worried or have questions call them.  I had to call them on several occasions and even use the 'bleep' number I was given.  Even after surgery (day surgery) I was told any problems don't go to A&E, call the breast care nurses or the women's' unit which operates 24/7.  I have always found them to be knowledgeable and supportive, just knowing there is someone you can talk to that knows about you and your case is very comforting.

Good luck for Tuesday, write questions beforehand and take them with you. Anything you want to ask, happy to try and help.

Take care x

Hello everyone, an update on my hospital appt yesterday. DCIS confirmed as high grade. I’m told, I don’t need MRI, CT, or any other scans as in its nature the in situ means no spread. I have been offered a lumpectomy or single mastectomy. She tells me it is possible that within the tissue removed during the lumpectomy there could be invasive cells not yet identified. If this is the case I would then return for lymph node removal and further checks. If nothing invasive a course of radiotherapy will follow the lumpectomy. The mastectomy if I go that route will include node removal at the same time and obviously the expectation is non invasive but pathology will confirm. My surgery is booked for 23rd Feb and I have a week to discuss and consider which route I take and an appt next Monday to confirm. Im leaning towards the mastectomy purely because there seems too many ifs/coulds  (for me) within the lumpectomy option. Has anyone else had these options and made choices they regret/ reccomend/reasoning behind. Any experiences from us on the ground rather than from a doctors perspective will help give me a more informed choice as I felt yesterday it was, I think we can get clear margins, I think we can get it all in one go, etc etc and I know nothing is ever 100 % guaranteed but there just seemed like too many ifs. On the plus side I have come away feeling confident things are moving and I’m on the road to getting rid. 

Hi Rakehill, It sounds as if your Consultant has been very thorough in her explanation of your options. I was of the opinion long before my first breast cancer that if it ever happened to me that my route would be mastectomy. However , when it did 22years ago I went with the lumpectomy and  complete  node removal( standard at that time, I believe)and have no regrets whatsoever.I was diagnosed again just as Covid 19 arrived on the scene, but with a different type but still ductal and in the other breast. Again I had to make the decision and with the help of my surgeon chose lumpectomy again but this time only the sentinel node was removed. On both occasions I did not have to return to theatre as they got clear margins.I  had radiotherapy and hormone blockers prescibed both times(see my profile if you wish by clicking on my name)
    It is a very personal choice and if your surgeon felt that one option was better than the other she would be advising you that way. Good luck with your choice and do discuss it with your Breast Care Nurse who will know about your particular cancer. Sending Big hugs and do let us know when you have made the right decision for you xxxKwissy

Hi Rakehill

I had an invasive lump and had lumpectomy; but extensive DCIS was found which didn’t show up on any scans etc- I won’t bore you with the details but my story is on my profile. I had a lumpectomy but ended up with a mastectomy with an implant reconstruction, replaced in 2019 with a Diep flap. I am not sure if many hospitals are doing reconstruction at present? So that would be one factor in mastectomy, are you happy with the thought of being flat? Even with reconstruction you have no sensation, so that is something to be aware of. If a lumpectomy is successful you will still have your own breast - I really didn’t think it would bother me quite as much as it has done... Such a difficult decision, as you say there are no guarantees with the lumpectomy, but it is also a much easier , day case operation, mastectomy usually overnight, if you can have reconstruction using your own body tissue about 5 days. 
I am glad I had the lumpectomy ( although mastectomy wasn’t an option deemed necessary at that time) but in the end, the mastectomy gave more reassurance, although I do miss my boob. 

Not sure if that has helped or confused you more! 

best wishes

Jo x