Newly diagnosed dcis

Hi DaisyB happy to answer any questions. 

I'm ER+ and PR+ (from the biopsy results) and high grade DCIS, so was advised tamoxifen would be advised for 5 years after my mastectomy (I'm perimenopausal, aged 48).  I had a SMX and immediate DIEP reconstruction. The breast surgeon who did my mastectomy called me to pass on my results (which are going to be sent to my local consultant).  Although all great news about the DCIS, she warned me that occasionally some radiotherapy to skin close to the margins can be used ("belt and braces" approach) to be doubly sure it's all gone. I'll hopefully have the opinion of the MDT meeting by my appointment next week, during which all the experts have put their heads together to give their opinion as to if this is necessary or not. 

There's a weird guilt from having DCIS, a kind of "is that it"?  My friend is going through chemo at the moment for her breast cancer and I feel awful that she is going through this, while my treatment is nearly done.  Has anyone else felt like this? xx

DaisyB I'll chuck in a few pennies as I'm in a similar position to Arturoartura but have had a WLE for DCIS. 

My surgeon oncologist confirmed I had a non-invasive (I think of this as having not grown legs and arms and running (elsewhere in my body)) ER (estrogen receptive) DCIS following my biopsy results. A high percentage of DCIS is hormone receptive (fed by hormones). There is a lot of differing information online about the effectiveness of tamoxifen for non-invasive DCIS. In fact, the next oncologist I have seen for radiotherapy discussions and hormone drugs, hasn't recommend it, although has said If I want to take it she'll prescribe it. This is because taking it is about reducing a cancer in my other breast, not the breast I've had DCIS in, as this is non-invasive and just because I have had DCIS in one breast, doesn't mean I will in the other. Yes, I want to reduce all chances of any cancer, but for me it is a balance between the risk/side effects (of tamoxifen) and benefit. 

Both of my oncologists have recommended radiotherapy, as others have said, it's felt to be belt and braces. I didnt have any DCIS close to the skin. The reason for belt and braces for me is to eliminate any 'straggler' cells that haven't been detected. DCIS is a very tricky cancer as it is not always seen well on a  mammogram (you'll note many of us had small areas identified (6/7 mm) and often have cm's of the stuff removed). My DCIS is in my left breast, so heart side, where I'll have to use the deep breath technique to protect my heart - more on this next week as I have my CT scan Monday and hopefully start radiotherapy shortly after. 

Arturoartura do you know why they have advised tamoxifen? Only asking as I'm going through similar yet my oncologist hasn't specifically recommended it (I have an ER non invasive DCIS). 

Arturoartura so I'm assuming then because you had a skin sparing mastectomy and immediate reconstruction they are talking about the possibility of rogue dcis cells near to the skin that remains? Its strange isn't it, because I initially thought that mastectomy would automatically mean no radiotherapy, but it seems its not the case!

I know my biopsies have not been tested for hormone receptors, as I specifically asked this question and was told they 'don't do that for DCIS'. But it seems a lot of hospitals do! I wondered if they'd do it after the full mastectomy. Its something I'll have to ask. You'd think there'd be a textbook and every hospital would do the same thing! Although I do worry about taking Tamoxifen and the side effects of that as well.

Ahhh... the 'guilt'. Absolutely. However, we must stop it! So we aren't having chemo and therefore our experience isn't horrendous 'enough'? That's not the case! Some women have chemo, but don't have mastectomies. So does that mean we've had some things 'worse' than others? It's impossible to quantify!

We all have our own experiences, they are all valid, and all crap in their own way. We all need support and to be allowed to feel our own feelings abut what's happened to 'us'. 

My hospital trust didn’t test for hormone receptors, they say it wasn’t needed. Very confusing tbh, some do some don’t and you wonder which is correct. I had a wle and have my radiotherapy session booked to start at the end of this month. 

Gertie15 Another confusing anomaly in the system then! I just don't get why it's not the same for everyone. It either matters or it doesn't.... no wonder people get so confused! 

Hi DaisyB, I’ve been reading all the comments recently and debating whether to chip in….

I’ve had DCIS in both breasts, 2013 left and this year righty breast. Both high grade and ER/PR negative 0. Left breast WLE 5cm and not clear margin, 2nd WLE but was still positive with no more tissue to take. 15 days radiotherapy plus 5 boost.

Right breast started at 4cm and after MRI and 1st surgery was 10cm and multifocal and positive margins.  There was a lot of discussion at MDT and with me as to whether mastectomy and DIEP or another go followed by radiotherapy. I was all over the place, really couldn’t think what was the best plan. 

Because of my previous radiotherapy on left, they weren’t able to offer surgery to match and after I tested negative for BRCA1/2 couldn’t offer risk reducing left breast mastectomy. 

In the end I woke up one morning and thought I’d give 2nd surgery a go. That was successful and clear margins in June, radiotherapy completed 5 days end of August. 

I think until I’ve got through follow up mammogram, I always be wondering what else might be lurking in the right breast.  

Everyone has a different diagnosis, a different journey and different treatment. But one thing I’ve learnt is there a lot of us out there to support each other, swap stories and do whatever we can to make our treatment and journeys a bit easier.

Best wishes everyone, speedy healing and positive thoughts for clear margins. Xx

I'm not completely sure but it was mentioned at my last appointment with my "diagnosis" breast surgeon (I was referred to specialist hospital for my DIEP).  I think they were suggesting it to reduce my risks of developing DCIS in my other breast over the next 5 years. I'm 48 (and had been on HRT prior to my diagnosis) so could be a wanting to drop my oestrogen levels further. I'll see what they say next week. I'm happy to give it a try (anything to reduce further risks) and plan to try and get back to exercising to try and reduce any nasty side effects (and bad moods..)

I think radiotherapy is more common when you've had a WLE vs a mastectomy, is that right Buzzz? Hope your scan goes well on Monday. How many sessions of radiotherapy have they recommended?

Yes RT is an added belt and braces with WLE as youre not removing all the tissue and yes I'm having 5 days. 

I know what you mean about anything to reduce the risk (DCIS again). I've read so much about tamoxifen for non-invasive DCIS and the jury is really out regarding the benefits and whether they outweigh the risks. But it is a personal thing for sure!

Karen22 thank you for sharing your story. I'm so sorry you've been through this twice and had to go through repeated surgeries and radiotherapy too, what a lot to deal with. Its the thing I don't really get about DCIS, it supposedly isn't more likely in the other breast than for anyone else, but if that's truly the case why the follow up mammograms? Also something i don't get, it DCIS can't spread, how does it end up so massive? Did 4 or 7 or 10cm just simultaneously erupt with DCIS all at once!? I don't get it 

I'm having a nervous night as I've had a missed call from my surgeons secretary today, voicemail just said 'about an appointment this week', but I'm not due to see her until next week... so don't know why she's calling. Could be nothing, but i hate that I didn't get chance to speak to her before bed time as my brain is full of what ifs!

I hope all you ladies post surgery are continuing to recover well.

Sunshine and rainbows i hope you have news on surgery date soon? x