DCIS, WLE and waiting for results!

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I found this forum a few months ago after my mother was diagnosed. I got loads of useful advice regarding side-effects, nails and nail polish when she was having chemo.

She didn’t have a lump at all, and as a result of her diagnosis, and the fact that I have had some breast lumps before (had a benign lump removed about 14-15 years ago) I decided to get checked out.

My mammogram showed some changes to one done 5 years ago. The ultrasound done immediately afterward showed some calcification and although the Dr was almost certain that that was all it was, she decided to do a biopsy to be sure.

A week later I went back to get the results. Had been positive all along that I would be told all was ok – that’s what had happened before! Don’t remember much after consultant mentioned cancer – I was processing things about 4 sentences behind what he was saying! I was diagnosed with low-grade DCIS, but the lymph nodes are ok.
Consultant and BCN were great – over the next couple of days they went through everything and answered all my questions, the sensible and silly! Did anyone else worry over silly things? I worried about the holiday I was about to book – would we still be able to go/get insurance, and I also worried about having a scar – bit daft considering I already had one on that breast anyway and wasn’t likely to want to go topless!

I had a WLE guided by a wire 7 days ago, and now I’m just waiting for the results. Have been told that I am most likely to need RT. I am finding it hard to settle to do anything. My mind keeps wandering and I don’t want to do some things because they could change based on what happens tomorrow.

I’m trying to be positive about things but then worry that bad news will hit me harder.

Please excuse my ramblings. Other than with my husband and a close friend I have not liked to talk about what has happened. I have had to tell a few other people but have tried to minimise things – it’s low-grade, they’ve caught it early etc, and it’s good to ‘tell the story’ here, and admit that I am more scared than I have let on.

Mary

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Hi Mary

I was diagnosed with the same type of DCIS as you in September last year.

I also had the wire guided WLE & unfortunately needed a 2nd op as didn’t have clear margins on 2 edges. RT was mentioned when given results of first op; but unclear whether I needed it as low grade.

Anyway 2nd op achieved very good margins & surgeon was as sure as she could be (but no guarantees) that area excised completly. Again referred to RT & recommended I speak to the cancer people about the pro’s/cons.

I did this in January 11; and was surprised they recommended I have RT. They take into account size of the DCIS area/grade/age & when we went through this they said they were recommending it to me due to my age (51) as likely it may come back in my lifetime and I would be older & less able to deal with any agressive treatment I may need.

RT reduces recurrance risk by over 50% could be higher for low grade DCIS. I also have family who had various cancers (including 2 who had BC; my cousin died at 42 with it). I’m also going to talk to a genetisist (can’t spell) about family history once RT finished.

I had only taken on board the fact it was low grade & hadn’t realised anything else mattered or any other treatment needed.

I was very scared when I had results of first op as they confirmed the “cancer” tag, and this left me reeling despite my logical brain kept saying this was early/non-invasive you are very lucky it was picked up on my first ever mammo.

I found out all the facts about this condition as I could (but stick to main sites like this one & Macmilllan site is good). I also felt I hadn’t prepared myself for any bad news following my first op; so less able to cope with news I needed a seond one.

After second op I wrote down all my questions even the “silly” ones (was told off by surgeon no such thing as a silly question; if you need something answered it needs to be). Anyway by writing down what I needed I felt in control.

I did this again for my chat with cancer registrar. I felt more relief at this stage as such good result from op’s. I did agree to RT (3 weeks started Tuesday so 13 more sessions to go).

Also a major study which was published in I think December recommended anyone with DCIS would benefit from RT unless they really low risk.

It was described to me by a friend that the surgery takes away the condemned building and the RT is putting in sound foundations for the future (a builder if you had not guessed!)

It’s OK to be scared; but the more you know about how this effects you; your treatment etc will lesson the anxiety I’m sure.

I was told by my surgeon if you were given a list of all the types of BC there are & you had to pick 1; you would pick what we have as the cure rate is so high. Just need to do as much as you can to lower the recurrence rate which is why when the experts recommended it and I agreed to RT.

Only had 2 sessions and no SE/concerns yet. Sorry I’ve rambled a bit hope this makes sense?

Best wishes
Lynne

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Thanks Lynne!

What you said made a lot of sense - my brain had been telling me much the same, but the emotional bit of me was off doing its own thing!

Just waiting for my appointment; today has gone slowly so far.

Mary