DCIS NOT DETECTED IN MAMMOGRAM ONLY WHEN OPERATED ON FOR PAGETS

[Eliza_246]

Oh good, glad it went OK. from the recovery point of view.

I think I have been lucky with scar very straight neat long line, albeit a good 10inches long from breast bone right round under arm. Just still very hard numb swelling the size of a shallow handful over the bosom area, surgeon says this can be normal even 11 weeks out and could take a year to flatten. Quite uncomfortable, and stretching difficult.  I had a huge seroma for first 4 weeks which was drained and got infected but not too badly, and now just left with this rock hard swelling. But I count my lucky stars, no chemo or radiation.

Hope all continues to go well for you.

[MaddyW52]

One week, two days after the op. Only real pain in my shoulder blade and in the armpits...pretty sure that was caused during the op when they manhandled me into the position required. Only had Sentinel node removed on affected side.

My husband says the surgeon doesn't think I'll need chemo (watch this space) as there was no spread...I have an appointment with him at the end of this month. Stitches out hopefully next week.

There was no issue (eventually) about me wanting the double although the surgeon did ask if I really was sure just before the op.

I'm not happy with the bunched up scar lines but I know they will relax over time...and if I'm still not happy after a couple of years I'll definitely be asking for some corrective surgery.

[Eliza_246]

Hi Skye82

I feel for you, it is  horrible to be put through making these decisions.  I am 11 weeks post single mastectomy now and recovery was long for me with various complications, but all on track now.  Even with all that I would still go back and have the other removed without a 2nd thought, and may well do that after next mammogram at the end of the year.  The worry is always there for me that the "healthy" breast could have DCIS growing and we will never know until it shows itself as IDC given our past history!

I do not value my breasts, they did a fab job feeding my 2 healthy teenagers when they were babies but they are superfluous to requirements now, and I would rather have none than one.  I never wore/wear a bra, and certainly was not about to start just so I could stuff something in it to look symmetrical, and would never have entertained reconstruction. I was always relatively flat chested so not that obvious that I am missing one, although I do see the odd person glance in that direction much to my amusement. I always have worn scarves and lose layers so hardly noticeable.  But to me it does feel odd with just one, so that compounded with the constant worry in back of mind is enough to make me have the chat with the surgeon later in the year. 

The breast nurse I had and got to know quite well, on the quiet told me that if I decided I did want the 2nd one removed after I had tried for 6 months living with only one, she said use the argument for "symmetry" reasons rather than worry reasons - as getting the agreement of the cancer team is easier with symmetry............  seems ridiculous!

Good luck with your decision, only you can make it.

[Eliza_246]

Hi Maddy

Hope your op went well and you are recovering OK.

So your surgeon was OK with removing the 'healthy' one for symmetry reasons in the end, or was there a bit of a battle?

It seems half the people I hear about with Paget's were sent away with steroid cream for skin complaint for many months before correct diagnosis. Glad my doc sent me straight to breast clinic.

[syke82]

I am also faced with this decision, it’s all so confusing! So my story goes like this. Breast fed for 9months and had a nipple laceration which was not healing, had that for 6months. Gp kept an eye on it for another couple of months, then I developed little pea size lumps in left breast. Went for a scan, did I biopsy and one of the lumps came back as inconclusive. Had a minor op to get more tissue for diagnostics and Low to intermediate DCIS was found under the nipple ( surgeon was shocked as he said to me after ops that he thought was just a little benign cyst), Had Mammogram of both breast done afterwards to  determine extent but nothing showed up on mammogram not even the DCIS in the left breast, a mastectomy of the left breast has been suggested. I told surgeon I would prefer a double mastectomy, they can grant that but ps wants me to think it through to be sure it’s really what I want (I am sure if you insist you want a double mastectomy, they will grant it). My fear is that if mammogram is not even picking up DCIS in the already affected breast, what’s the guarantee that the so called healthy breast doesn’t have anything growing in it. I am so scared of finding out years down the line that there was something in the other breast and then will still have a mastectomy (and worse chemotherapy and radiation). Ps thinks it might be drastic to take out the other breast, but it’s so scary! I am 38 with 2 little children 2year old and 5year old. It’s hard when you are faced with this life changing decisions!

[MaddyW52]

Sorry for delay I replying..I seem to spend more time on Facebook these days and often forget about this site. May 17th I'm having the double. Not really looking forward to the dye injection which will probably be done on the 16th..I haven't forgotten the anaesthetic injection before the biopsy!!!

My DCIS was (fortunately) discovered by mammogram but the lump wasn't palpable so it would never have been picked up by manual examination. The Paget's wasn't picked up on mammogram in June and seemed only to be eczema or "jogger's nipple" between October and February when I went to the doctor for some cream....😟

[Eliza_246]

Hi Maddy

Sorry didn't reply. Interested to segue you got in with your request for the dble mmx, please let me know.

In the end I had single mmx 7 weeks ago, totally the right decision as they found another 2cm area of DCIS.

I am thinking about asking them to remove the other later in the year  and will argue for symmetry reasons as they will do it for that more than just 'worry' . I have good reason to worry as both my DCIS were not found  but apparently that is not good enough reason to remove healthy breast, but need for symmetry is !!!!!!

Please let me know how you got on  thanks  

[MaddyW52]

Hi Eliza, I had DCIS 11 years ago. I was extremely grateful that the surgeon didn't perform a Mastectomy at the time and that he opted for a breast conserving lumpectomy (I am a breast person sadly). I've recently (last week) been diagnosed with Paget's Disease ( which often doesn't show on mammograms) and have a Mastectomy planned for May...I'm now going to speak to the surgeon to request he removes both breasts - not because I'm worried about recurrence - I'm tired of being lopsided and would welcome the chance to wear strappy tops and boob tubes - every cloud and all that...

[Eliza_246]

Thanks Helen for quick reply.  So nice to hear from someone with same conundrum!  Seems so wrong to just have to wait and see if it appears and then treat it - when we have a history of it not showing. 

I am going to ask if they will do double and see what information they come back to me with, I will let you know.

[helenann]

Hi Eliza - My 'story' is that I was diagnosed with IDC in my right breast in August. There were a number of different area's of concern of IDC and other suspicious cells and I had a right sided mastectomy on 24th Sept. I'd had numerous mammograms, scans and an MRI done on both breasts during all the investigations and DCIS was never mentioned. After the mastectomy I got the histology results and it said as well as the IDC there was DCIS - intermediate grade. I was really surprised when I seen this as there had never been a mention of it ever.

I asked my consultant about it and she said DCIS doesnt always show up on mammograms or MRI's. I asked her how do I know I haven't got DCIS in my 'good' breast that might become invasive and she said it would be monitored closely at my yearly mammograms and any slight change would be investigated fully at that stage.

I must admit I was a bit concerned at this - it's as if I have to wait until, if there is DCIS in the good breast, it possibly becomes invasive before they do anything??? I thought as I had DCIS in my right breast and it obviously became invasive there was a good chance of the same thing happening in my 'good' breast?

So nothing will be done about this and I just have to wait until I'm due a mammogram in August this year to see if anything has changed.

Love, Helen. xxx

[Eliza_246]

Hi

Just wanted to see general consensus on decision needed.

I had my operation to remove Paget's (central excision lumpectomy) on 20th December. Prior to the there was no sign of any DCIS on any mammograms or ultrasound.

Pathology report on removed tissue finally through and just been told yesterday that they found 2.5cm high grade DCIS within the tissue removed with a good border. So I have been given the option now of going back in for a mastectomy or just monitor with yearly mammograms.

Well considering this one never showed up on the mammogram or ultrasound, I don't think I can risk relying on mammograms to find anymore DCIS, and who is to say if there is not another patch lurking in the rest of the breast. So most likely will go back for the mastectomy to avoid any worrying.

Overnight am now thinking I should just be done with it and have a double mastectomy, as if I have any DCIS in other breast they also may not show themselves and then may not show until it gets to the invasive stage - I know not all DCIS turns invasive, but considering I had high grade unseen on mammograms then I cannot trust yearly mammograms surely?

If I had not had Paget's then the DCIS would have remain unseen for another year and possibly turned invasive by the time it shows on a mammogram. Or am I overthinking this? Surgeon had said the DCIS and Paget's was unrelated.

Surgeon doesn't seem to think double is necessary, as low percentage of people get BC in 2nd breast, but then a low percentage of people with BC have Paget's so I can't cling to that one!

Here in the UK MRIs are not routinely used for breast screening, apparently yearly MRIs are not recommended if not necessary as recent medical info shows the dye collects in the brain, I did ask if that was just a COST ISSUE for teh NHS but they said definitely not.

So to be free of worry I feel I should just get rid of both. I am not a breast person, so that does not really bother me.

Any thoughts / insights / advice welcome, many thanks.

Eliza