Pre-cancer? DCIS?

[Angel2014]

Hello all,

I haven't posted for a while but thought I'd add to this (again). I no longer give chapter and verse to anyone, I say I've had cancer and my treatment for it is currently on-going. Treatment covers so many things but the majority of people wrongly assume if you haven't had chemo you haven't had cancer, how wrong they are. Whenever I say DCIS/pre-invasive it just opens a door where anyone & everyone gives me their own opinion. I have found that this causes me upset and stress that I don't need, so I just stick to 'cancer/breast cancer'

My genetic consultant also refers to it as cancer.

I'm in for stage 2 surgery next Weds to exchange the tissue expander for a silicone implant and tidy up the dog ear under my arm. Feeling nervous but will be glad to have the expander gone. Nipple reconstruction to follow at a later dat then tattooing then hopefully done.

Sending you all good wishes xx

[jillybee]

Interesting thread.I had little white dots all over my right breast,following mammogram...radical mastectomy followed,this was 2000.When still feeling tired and unwell,some months after,I was told I am OK.It wasn't cancer I had....however,had Pagets in nipple 4 years later.

Years later,Dx with DCIS in other side,this time,a tumour,4.5 inches across other side,mastectomy.

on my GPs computer,there was BREAST CANCER written across the screen.

I say I had breast cancer,as it is easier...and I think th phrase pre invasive is the best description.

[Kiki2]

I agree with all the earlier comments, my initial diagnosis was termed pre-invasive rather than pre-cancer which I feel is a fairer description. However after mx it turned out there was also a 3mm invasive cancer which hadn't been detected so watch and wait would not have been good for me! It is really important that the right terminology is used and we are given a realistic picture of the situation, not a sugar coated version! Xx

[FizzB]

Oh how fab to find you!! Have been driven completely bonkers by my mum's & my sister's insistence that I've not had "proper" cancer, despite having to have bilateral mx this year after DCIS diagnosis. Yes I have been lucky but yes I have also been through a huge emotional & physical trauma. Still baffles me how they are able to undermine something that needed such radical action.

[Yvie178]

I was diagnosed with high grade DCIS and not once was it referred to as pre cancer.  If it was I would certainly have asked why on earth they were telling me I had no choice but a mastectomy!  I did get asked whilst seeing one of the GP's at my surgery post reconstruction - why I had had a mastectomy !  Both myself and the nurse just looked at him - I could clearly see on the screen my diagnosis.  My surgeon was gobsmacked. 

[skinnyminx]

Well said Angel2014.  I hope you feel able to tell your BCN how her description made you feel.

Best wishes.

[Angel2014]

Hi,

I prefer pre-invasive as pre-cancer is undermining and insulting.  My doctor/surgeon was crystal clear in telling me what I had was cancer (high grade multi focal DCIS comedo type with necrosis 83mmx79mm).  My BCN on the other hand described it as being the same as getting an abnormal smear test result! What utter rubbish, an abnormal smear test result (which I've had in the past) didn't result in a hysterectomy whereas my DCIS resulted in a mastectomy, discussed and agreed by a MDT as my only option.  Like others my surgeon gave me a signed form that entitles me to a 5 year prescription fee exemption card, don't recall getting that after an abnormal smear test.

My notes/copies of letters to my GP all refer to my diagnosis as cancer and I take serious offence when anyone down plays it.

In my opinion medical professionals/info booklets etc. All need to sing from the same hymn sheet so there isn't ambiguity over this diagnosis and we don't feel we need to justify our surgery or other treatment or convince anyone (including ourselves) that this is cancer.

This really does press my buttons...and breathe lol xx

[keepmumsane]

Eek just realised I typed a swear word in there and it automatically bleeped it. Phew

[keepmumsane]

So agree. Its just **bleep**. Soooo not really cancer,  im in a breast cancer clinic and you're amputating my breast.  (Oo suddenly got mad eek) yeah,  maybe you could rephrase that. 

Its right up there with,  lucky we caught it early. 

Sigh.  I havent even had a proper full diagnosis yet, maybe chemo, definately lose the breast though. 

Pfft.lets all just grow a little and maybe skip to the park with our surgical drains and rattley bag of prescription drugs. 

Wow.  Sorry,  really seem to have found a nerve.

Bring on the treatment,  but dont patronise us with terms that change very little. 

Hugs ladies,  going to have a cup of tea, and shake it off a little. 

Very good point.

Xx

[skinnyminx]

My cancer was multi-focal, mostly a large IDC mass but also some areas of DCIS so the expression "pre-cancer" was never mentioned.  So, in a way, I apologise for jumping on this thread as I am not a DCIS lady, however, I do feel very strongly about diagnoses being correctly described in a factually accurate manner so I am commenting in order to add my voice as support.  I like to be given it straight and I even thanked the radiology consultant who told me it was breast cancer - my exact words were "thank you for not b*llsh**t*ng".  

riversidedawn - it is possible to have IDC and DCIS (and other stuff) all going on in the same breast - I did.  The pathology report made after your op should explain this in detail.  I obtained a copy of mine from the BCN.

I agree with what's been said - referring to DCIS as "pre-cancer" is patronising as well as being factually incorrect and IMHO oncologists who use this terminology should be challenged.  I wholeheartedly sympathise with people who have had to deal with the repercussions of this misnomer.  Tattyaniajane you, in particular, make some excellent points. 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-...

As this booklet produced by BCC explains it is INCORRECT to describe DCIS as "pre-cancerous".  Perhaps the oncologists who tell patients this should actually read some of the leaflets which their team give out to said patients.

[pinky3]

Thanks for your question.

 If you only had a diagnosis of DCIS then you are dealing with non invasive. Once you have a diagnosis of IDC you are dealing with an invasive cancer with the additional risks that diagnosis brings.

Pure DCIS is never treated with chemotherapy. Usually surgical removal, possibly radiotherapy and possibly hormone therapy. Treatment depends on grade, size etc.

IDC with DCIS is treated as if IDC alone. Treatment is dependent on the stage, grade, size of the IDC.

Having both IDC and DCIS is pretty common.  

Hope this helps.

[riversidedawn]

Now I'm totally confused, my diagnosis was stage 3 invasive ductal carcinoma with high grade DCIS - so what's that, invasive or not? 2 tumours plus 26/27 lymph nodes with cancer.

I too have had a mastectomy because there were 2 tumours so lumpectomy not suitable. Turned out both tumours bigger than the thought from the mammogram and both with cancer...

Seeing surgeon tomorrow (sorry , they'd today!) so will have to ask her!

[pinky3]

Thanks for the replies. Seems that so far we all think the same.

I am really hoping that some professionals pick up on this thread and take in to account the comments.

If anyone else  has an opinion please reply, the more replies the better 🙂

[Kentstar]

I have to have a mastectomy next week due to extensive DCIS. I for one would sleep better at night about my treatment if DCIS was called cancer as opposed to pre-cancer. I think mine was referred to at diagnosis as very early breast cancer but my recall of that meeting is only 3 words: cancer, mastectomy and reconstruction. I am finding it difficult to come to terms with it all. I am so grateful it is not invasive nor agressive but angry at the extent of treatment required. I did consider watch and wait but common sense prevailed as I know it can break through and become invasive, of course it may not but I am too much of a coward to take that risk. In reply to the original post I think pre invasive is a better term.

[Jan-65]

Wow I'm so glad someone else thought this!  When I got my diagnosis the doctor said "I'm afraid we have found some pre cancerous cells".  Although shocked I thought oh well thats ok at least its not cancer!  So he began to tell me about my treatment, surgery, radiotherapy, tamoxifen.  I was so alarmed at hearing the words radiotherapy , I remember saying to him "is this all necessary I've not even got proper cancer"?  He then apologised and said he was sorry he had obviously confused me in using those words but this is the correct medical terminology but dont be confused because this is cancer. 

So I wholeheartedly agree the terminology should be more explicit.  I must admit when I am talking to my friends and family I do always say "it wasn't real cancer".  How strange!

[tattyaniajane]

Hi, yes I had a diagnosis of extensive high grade DCIS, I had a skin sparing mastectomy in March, followed by radiotherapy in July (as no clear margin) and yes I hate the terminology used.
My Onc always says "remember its pre-cancer, not cancer", everyone says "how lucky it's not cancer", but I have prescription exemption for 5 years (due to cancer diagnosis on the form), I can't get life insurance (which unfortunately ran out this year), due to cancer diagnosis! My pathology report lists carcinomas (cancer cells), I've had more cancer treatment than my Mum who had a small invasive breast cancer area. When I asked my boss to reduce my hours after I finished rads, he said yes, but was quick to point out "it's pre-cancer and we all probably have some growing in us!"
Yes I definitely think the terminology needs looking into for this diagnosis and I use the phrase pre-invasive cancer.
I would be interested in others opinions too. Xx

[pinky3]

If you have had a diagnosis of DCIS were you told it was pre-cancer?

Did you find this term to be patronising or confusing?

Did the use of the term pre-cancer make decision making harder as it plays down the diagnosis?

I didn't like the use of the term. I felt confused by its use when I was being told I needed surgery, radiotherapy and possibly tamoxifen.  I think the term pre-invasive cancer is more accurate. The term pre-cancer might be acceptable if the condition was dealt with by careful monitoring, but in reality that is hardly ever the case.

What do you think?