DCIS again

[Janet1954]

hi there all...time for an update....
All has been well following reconstruction, and last Saturday my 2nd operation (Symetary) to uplift my left breast was performed, only stayed in hospital overnight and drain removed before I left the hospital. Also at the same time the surgeon removed some "overhang" tissue that was giving a bit of discomfort and I am healing well. Only problem I have was with the dressing that was on to tight and I ended up getting a row of blisters so whether or not I am allergic to this type if dressing or not remains to be seen. I am very lucky since my friend is a nurse and she has been checking everything for me. So this now leaves me with the replacement nipple and tattoo to be completed which will be done within the next 6 weeks.
I keep thinking about what I was doing this time last year when to all intents and purposes was completely unaware what was going on inside my body. But life and time has marched on. No one wants the hand they have been dealt but I was determined to play mine and win...what the future holds no one knows but I refuse to worry about something that I have no control over.... the sun is shinning..happy weekend everyone

[morrisbird]

IllyB and others

Yes the loss of a breast does seem relatively minor compared with what others have gone through.  At least I can say that now that I am through it!  I had a single DIEP on 13 April with a bit of a hiccough when they had to take a vein from my right forearm as well (apparently happens in 1% of cases!).  But pathology was clear and so was the lymph node they removed.  So no more treatment - I cannot have radiotherapy again having had it 6 years ago, but at least I don't have to have chemo or medications either.  And after feeling like a huge, heavy lump attached to me for a few weeks, now I hardly notice it and the scars are healing nicely.  Though it did remind me to be careful this morning when I picked up a slightly heavy shopping bag!  Was telling a friend about my experience, only to hear later from her that she had a lumpectomy last year, followed by a ghastly experience with chemo and now radio.  That really made me realise that a mastectomy, while drastic, if it is the only treatment needed, is relatively bearable.  And I can get into my trousers more comfortably again!  Hope everyone else is recovering well too.  xx

[IllyB]

Hi Janet1954. It was really helpful to read your post. I am about to go through exactly the same thing but when I first came onto this website I found it daunting as many women kept talking about radiation and chemo for DCIS and I have only been recommended a masectomy with reconstruction. Since I found out I don't need any further treatment I was so pleased and the loss off of a breast seems so trivial now. Thanks for your post

[lexilou3]

Hi morrisbird,
My DCIS was discovered on first mammo, biopsy showed low to intermediate grade, later WLE and pathology revealed high grade DCIS and invasive cancer. Surgeon seemed very surprised by my path results, MDT recommended biopsy of nodes and rads. Chemo for me wiuld have had marginal benefits, and had its own risks.
Hope this helps in some way. Am still terribly fatigued and struggling to regain an ordinary life.

[morrisbird]

Thanks Jojo. My AF is genetic and was diagnosed 10 or 12 years ago. treated with medication for some years, then have had 3 cardioversions. Worked at first, but not last year, so in January 2015 had ablation. This too worked at the time, but an ECG last week showed that it was back. That was before I got the DCIS recurrence news, so suspect heart has gone into overdrive with latest stress! Bit hard to manage stress with what is being thrown at me now! I see Cardiologist on 9 March - haven't been able to bring the appointment forward. So it will really be down to his judgment as to what my heart can bear under surgery. Frustrating to be in this no-man's land at the moment! But finding it helpful to use this forum, so thanks to everyone who has posted so far.

[Janet1954]

Hi there,like you DCIS was diagnosed and masectomy and Breast reconstruction recommended. Like you I was upset at the thought of losing my Breast especially as it was described as "pre cancerous" but I was not prepared to take any chances. So after much soul searching a finally decided that masectomy was the answer with immediate Breast reconstruction..and I have not looked back. My operation was performed on the 31st January and yes my new Breast felt "alien" but 19 days later it is now settling down. I am not know for my patience since I am a very active person but I did listen to the experts and carried out their wishes to the letter....so no housework, (this has gone down like a bomb with my husband) or heavy lifting..to be honest you won't be able to do that anyway after the operation. I started to do my exercises before the operation just so that I knew what was expected afterwards. My breast care nurse recommended a Bra Top made by Slogi and although good I found that a front fastening bra made by ROYCE a was better and gave more support. The reconstruction. I had was using the muscle in my back. For various reason I chose not to have the "tummy tuck" but that was pure choice. yesterday I went to see my consultant and had the best news you could receive and that I will not need radiotherapy...so having the discomfort has been a small price to pay. I only have to have 1 more ooeration to reconstruct the nipple and "uplift" my other Breast. As for recovery times ...no driving for 6weeks so that gives you an indication..

[JoJo11]

Hi Morrisbird,
No, that was the first episode. I had had the usual ECG two weeks before at my pre op and it was fine. Of course with something intermittent like that it's all a bit of a lottery.
I must say I was very upset! Stupid thoughts like why me, haven't I got enough to cope with were difficult to shake off. But my surgeon came out of theatre and assured me that he would be able to do it and the delay wouldn't matter.
Has your AF developed since your radiotherapy? I have wondered if that's what caused mine.
Let me know how you get on, I hope something is sorted out soon for you.
Jojo

[somerset]

Hi Morrisbird,

So sorry you are in this position. I understand that with DCIS there is currently no way of knowing which cases will develop into invasive cancer and how quickly. In my case routine screening mammogram then biopsy showed intermediate DCIS in one breast.  I wanted mastectomy but consultant wanted to try WLE first so I did. Margins were not clear (more low grade DCIS) so I then had mx. Afterwards I was told this was definitely the right decision as analysis after mx showed the surrounding cells had all been in the process of changing so would rapidly have gone on to be a problem. 

I was concerned about the other breast but told risk not much higher than the norm.  Less than 3 months after first mx I found a lump the other side.  Mammogram/ultrasound looked OK but luckily they did a biopsy beyond the lump which showed high grade DCIS. This time consultant agreed to go straight to mx which revealed invasive cells - these had not shown up on anything before.  Luckily nodes clear (had SNB with mx) but after discussing with oncologist chose to have more treatment to reduce risk of recurrence.

My experience not quite the same as dealing with recurrence but illustrates the problems predicting what DCIS will do and may give an insight into why mx might be being suggested to you (especially as your DCIS has recurred). I thought my consultants were good but they simply did not know what was happening without the mx. I was always in favour of mx because I liked the idea of more certainty/not having mammos every year etc so probably easier for me to choose it. However lots of people with DCIS don’t feel like this, do not have mx and are fine many years later - which makes it a tough decision.  It is a very personal choice and I hope you get lots of info/help from your medical team.  

I was sure I did not want reconstructions although I found it useful to be told that if I changed my mind it is possible to do them later.  I did not want any more surgery than was necessary and I was lucky in that I healed well and bounced back quickly.  Both times in hospital for 2 nights (drains removed before discharge); I had week of the op off work and a week working at home (and took it fairly easy the following week) - back to driving approx 2 weeks after op.  I did not have the heart complication that you have (and I am a bit younger) - hope your cardio team get involved and can advise you. I understand that if you go for reconstruction the surgery takes longer and is more complex and recovery takes much longer - JoJo’s post looks really helpful on this.

Very good wishes in making your decisions. I see June has posted about the helpline - I found talking to someone there very useful.  

[morrisbird]

Thanks Jojo, that is really helpful.  At the moment I am just trying to get the cardio and breast sides to talk to each other so it is not me who has to work out what can and cannot be done.  Must have been tough being psyched up for one type of op then not being able to go ahead.   Did you know about the AF beforehand?

[JoJo11]

Hi Morrisbird,
I had high grade DCIS in 2007 treated with WLE and radiotherapy. I then had a recurrence in 2015 so a mastectomy was recommended. I went in to hospital for in in May, but when I was wheeled into the anaesthetic room was found to be in fast AF. So op cancelled and admitted to cardiology. I had various tests and drugs to cardiovert, then put on beta blockers and anticoagulants. No coffee, less alcohol, no stress (lol). I finally had the mastectomy with LD flap and strattice mesh and an expander implant in July 2012. As I had previously had radiotherapy 5 years before the surgeon did quite a large skin graft as well. I came home after five nights in hospital with two of my three drains still in, and I had someone stay with me for two nights. I had seromas drained each week after the drains came out for four weeks, and bizarrely during this time fluid would leak out of the entry point of my donor site drain, so needed to wear old tops and t-shirts! It took nine weeks to heal, the donor site being the last to finally close, but I'm quite a bit older than you -68 now. Driving was quite hard, I had a manual then and it really made my arm ache, but I drive mostly in town. Anyway a year later I had the expander replaced by a permanent implant and its all settling down nicely. Finally in January this year I had a reduction and uplift on the good side,
It's a long process, everything takes a long time. The filling of the expander implant had to be done over about 5 months to stretch the skin very slowly.
I too live alone so understand the difficulties. I arranged to get my groceries delivered, which helped a lot, it meant I wasn't always having to ask people to do shopping for me. I was told not to drive until completely healed, but fortunately I have good local bus services. At times I was attending either GP for dressings or hospital for antico clinic, cardio clinic, as well as various breast appointments, sometimes 3 per week! GP did offer me a district nurse to come and change the dressings, so that's a possibility, but quite honestly I prefered to get out.
I still have AF but very few occurrences now, and I will be on medication for life.
I hope this view from the other side of things is helpful .
Very best wishes
Jojo

[June_BCC]

Hello Morrisbird

Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes

June, moderator

[morrisbird]

I had DCIS 6 years ago and had 2 WLE plus radiotherapy.  At my annual mammogram in December they identified some calcification in the same breast and I had a biopsy done last week.  Yesterday I learned that the cells they had taken out were "not cancerous", but were Intermediatae DCIS.  As I have already had radiotherapy on that side, the recommended treatment is mastectomy and reconstruction.  I'm feeling a bit overwhelmed by this diagnosis,especially with the controversy over whether DCIS actually develops into cancer at all.  I am a 58 year old post menopausal, but not keen to lose the breast unless I really have to.  It is also complicated by my having a heart condition (persistent AF) which has so far not responded to treatment, so really not sure what surgery my heart will be able to bear.  Unfortunately the breast team have not (yet) joined up with the cardio team to provide me with some sensible advice, despite being in the same hospital trust!  Anyone else had a recurrence of DCIS?  Also interested in recovery times for Mx as I live alone and am fairly independent.  Hospital are keen to do reconstruction with a tummy tuck.  Any advice or similar experience welcomed!