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DCIS newly diagnosed - and mastectomy

11 REPLIES 11
Becky87
Member

Re: DCIS newly diagnosed - and mastectomy

Great to hear it’s all gone smoothly! 

I'm on the waiting list for a Diep and I’ve been getting a little anxious about it. So it’s great to hear people’s positive experiences, good to hear that your pain was managed well too! 

Sending healing vibes! 
take care, 

Becky xxx

 

Fiveoclocksomewhere
Member

Re: DCIS newly diagnosed - and mastectomy

I thought I’d provide an update in case anyone else finds this useful.

I had my mastectomy and DIEP reconstruction on 4 May, and it was all pretty straightforward. I’m sure there are a number of contributory factors for that, not least the medical team’s skill, but i felt that the fact that the hospital followed the Enhanced recovery after surgery (ERAS) protocols really made a difference (particularly when I read other people’s accounts of their recovery, especially on the US sites). The breast drain was removed on day 2 and the abdominal drain on day 3, when I went home. Although there was obviously significant abdominal tightness, I was able to stand and walk around with no problems from day 1 onwards (attractively hunched, obv, but that improved fairly quickly). I had no pain at all - which I put down to the brilliant anaesthetist, the follow up pain control, taking paracetamol/ ibuprofen religiously for about 10 days, and not overdoing things. 

I have to say that I’ve slept for England since coming home - including at least one siesta (minimum 2 hours...) during the day; given how miserable the weather's been, I haven’t missed out on anything! Because I’ve been so tired, sleeping on my back hasn’t been the problem I thought it would be (although my husband seems to think I snore. Clearly he’s mistaken), and the V shaped pillow has been a godsend, providing neck support. And the best thing of all is that I had the all-clear after 2 weeks - the DCIS hadn’t spread at all, so hopefully once part 2 of reconstruction has been done, I can put this whole episode behind me. 

The advice that others have provided has been invaluable - the nurses were most amused at the amount of dried fruit I brought in with me, and I made sure I had long leads for my phone and iPad, and plenty of moisturiser/ hand cream. During the first couple of long nights, in particular, when it feels like you’re being prodded every few minutes, I found having Radio 4 on in the background to be really useful - I half listened to podcasts, music (and the shipping forecast!), drifting in and out of sleep, and it stopped me getting stressy or clock watching. I discovered ‘Fortunately- with Fi & Jane’ - absolutely brilliant, and listened to gazillions of episodes. 

I think I’ve been really lucky, to be honest, from asymptomatic diagnosis, to the fact that my local hospital is a centre of excellence, and of course because I’ve now got the all-clear.  But my experience has been about as positive as these things can be, and I’m relieved, and pleased, that I went down this route.

 

Much love to all of you on the same / similar journey, and if I can repay the kindness that others have shown by answering any questions, based on my experience, then please, please get in touch.

xx

 

Fiveoclocksomewhere
Member

Re: DCIS newly diagnosed - and mastectomy

Hi

Will be having Diep reconstruction - still feels unreal a) being on this forum and b) being in this position in the first place. Having the pre-assessment the other day made it feel more real, but waiting for a date means you’re in limbo, I guess. Still, the delay in a date means I’ll probably be able to get waxed before needing to self isolate, so that’s something - I want everything nice and tidy! 🤦‍♀️ 

Xxxx

Becky87
Member

Re: DCIS newly diagnosed - and mastectomy

Haha! Honestly I had such a rotten 24-48 hours about 3 days post op, wouldn’t wish it on anyone!! 
that’s fab that you can have immediate reconstruction. Which one are you having? And good that you have time to get things sorted before your op too. 

haha I bought loads of bras too, now own now Bras than I’ve ever owned! 

I’m doing well thank you. Will be a year post op next Tuesday and have my first round of screening scans! My boyfriend said to me the other day “the scanner is your friend!” So I’ve been repeating that to myself in preparation!

Becky xxx

 

Fiveoclocksomewhere
Member

Re: DCIS newly diagnosed - and mastectomy

Hi

I’ve just been for a long walk - absolutely agree with you on how good it is to be outside, and am planning to keep that going post op too. I almost had a date..... but my surgeon wanted to wait for the outcome of the genetic screening blood tests, so that’s pushed it back a few weeks. I know she’s right, but am just impatient to get on with it so that I can put it all behind me. I’m hoping for late April/early May, and should find out this week. My pre-assessment is going ahead on Tuesday, so things are moving, which is good, and I’m able to have an immediate reconstruction which is also good.

Made myself laugh the other day - I noticed on another thread that someone else had recommended laxatives, so thought ‘crikey, that’s two people, must be a good idea’...... then realised it was you! You’ve made the point though, and I’ve bought some dried prunes already (as well as a couple of bras and big pants. I like to be prepared.....).

Hope you’re doing well.

 

Becky87
Member

Re: DCIS newly diagnosed - and mastectomy

Sorry for the delay in reply! How did your appointment go? Have you got a surgery date yet? 
The thing which helped me most was getting out for lots of walks! Especially this time of year and taking in all the nature. Haha sounds cheesy but really did (and still does) help me to process anxious thoughts and generally calm me down. Plus the fitter you are the easier recovery will be! I did lots of gentle walks once I felt up to it post op too, a life saver while waiting for the results from the op. 
I also started couch to 5k at the end of summer and found running has been amazing for my mental health. But I didn’t start that until 4/5 months post op. 
Also my friend bought round multiple treats and meals after my surgery, including a tub of berries - grapes, strawberries, blueberries and raspberries. They’re meant to be great antioxidants and lots of vitamin c to boost your immune system and help healing. I’ve been eating them for breakfast for nearly a year now and and am now addicted! 😂 

Hope that helps and that all is well? 
Becky Xx 

Fiveoclocksomewhere
Member

Re: DCIS newly diagnosed - and mastectomy

Thank you all - this is really reassuring. I’ve got my first appointment with the consultant tomorrow and I’m hoping that she’ll say I can have reconstruction at the same time, so I can get it over with in one go. I want to make sure I’m in the best possible shape for surgery and recovery so do you have any advice on what I could do, or what you wish you’d done? I know so many people comment on how helpful this forum is, and i can’t believe how reassuring it feels have this community round you. Hope you’re all doing well xx

Jaybro
Member

Re: DCIS newly diagnosed - and mastectomy

Hi

All I can add is to ask before surgery if you’re likely to have a drain. Mine came as a bit of a shock to me and, as I’d been discharged the same day at my request, I had little idea how to manage the damned thing! Button-front pjs are almost essential as raising your arm may initially hurt (stlll do those exercises!) - and borrow a few of your husband’s shirts to wear - you need loose, front fastening tops while the dressing is on. If you have a reconstruction, you’ll need comfy support bras with no wiring or seams. You might check with your breast care nurse if this is likely to be needed. As I had a mastectomy and axillary clearance, I’ve no idea except my own experience and I wanted seamless support once the dressing was off. It will all depend on where your scars will be.

Be prepared to spend a few days being waited on hand and foot. General anaesthetics affect people differently. But yes, be prepared for constipation and also for the DVT stockings you have to wear. I had a short GA the other day for a biopsy and had to keep them on till the next morning. After my mastectomy, I was expected to wear them (with short breaks) for 6 days. They are a nightmare to get on when you feel one-armed and are wielding a half full drain! I didn’t need any painkillers but it’s worth stocking up - your b-c nurse will know what most patients find effective in your circumstances.

Baths are difficult with one arm at full strength but showers are out unless you have a waterproof dressing. Even that’s not foolproof so I’d recommend buying some dry shampoo to tide you over the short period.

As for emotions, we’re all different and sometimes we’re taken by surprise so I’d say be prepared for any mood from euphoria to despair. It might be worth exploring YouTube, or apps like Headspace or Calm, that offer relaxation sessions and mild hypnothotherapy to help you go to sleep. That way you’re prepared for every eentually till something unexpected crops up!

I wish you all the best, Jan x

 

donkeywoman
Member

Re: DCIS newly diagnosed - and mastectomy

Hello @Fiveoclocksomewhere ,

@Fiveoclocksomewhere has given you great tips there so I don't have much to add. But firstly,  sorry you are here, but glad you have found the forum early.  I didn't join until I was starting chemo (like you I had surgery first) and think I would have found it helpful. 

I had a mastectomy in October last year and to be honest it was nowhere near as difficult to recover from as I expected. I didn't want reconstruction so it is a different op of course. Totally echo the sentiments about breast care nurses and exercises. And just being kind to yourself. I'm sure your friends and family will want to look after you and, if you can, let them. 

I too have been mainly very practical about the whole thing. Then every now and then I have a massive wobble and a damn good cry. I'm just trying to go with the waves. Breast cancer doesn't change the people we are, even though sometimes it feels as though it does. 

I found it helpful to prepare the bedroom (hubby has moved out for now, due to covid and for me to have lots of peace and quiet). I got a little table in for all the meds, paperwork,  diary etc. Broyght a chair up and generally made it my safe space. And plenty of tissues! 

All the very best for your surgery and hope you find this forum as helpful as I do.

Becky87
Member

Re: DCIS newly diagnosed - and mastectomy

Oh also get in a supply of gentle laxatives - post op constipation is not your friend! Haha! I used lactulose 

Becky87
Member

Re: DCIS newly diagnosed - and mastectomy

Hello! 
I had a mastectomy for DCIS In April last year. Couldn’t have reconstruction due to covid but hoping to have a Diep at some point this year. Are you able to have immediate reconstruction? 

My main advice would be phone your breast care nurse when you have a wobble. I didn’t phone mine in the beginning during my wobbles and I regret it as I think I would have benefitted from the support! 
Secondly do all the arm exercises they give you, although you don’t feel like it after surgery they do really help with the aches and pains! Particularly in the armpit as I had a sentinel node biospy and that caused quite a bit of soreness. That being said I managed my pain mostly with paracetamol, with just a few codeines the first few days post op! 
I didn’t have much time to prepare for surgery as my surgeon phoned me the Thursday night and I was in at 7am Monday morning. But getting meals made and in the freezer for when you’re recovering would be handy. And get a good food shop in before (with lots of treats!) so you’re all prepared for recovery. 
Hope that helps, any questions feel free to ask  😊 

 

Becky xx 

Fiveoclocksomewhere
Member

DCIS newly diagnosed - and mastectomy

Hi

I’ve just been diagnosed with DCIS in one breast and told I’ll need a mastectomy (and I want reconstruction).  The pathologist I saw pre-biopsy results said a mastectomy was likely but I’ve had confirmation today. I’m ok with this and have decided that an appropriate response today is to drink a great deal of wine (and eat chocolate) before I revert to normal eating / drinking habits. I’m 56, fairly healthy, and want to get myself in the best possible position for surgery, reconstruction and coping with this mentally (my husband and mum are brilliantly supportive as I hope my friends will be when I tell them).   I know this is going to hit me at some point (am very much in practical mode at the moment) so would really really appreciate advice from those of you who are ahead of me on this journey - what should I think about? What do you wish you’d known? I can’t tell you how brilliantly supportive I’ve found this forum even before I had the firm diagnosis, so I’m hoping for advice for all of you. Much love to you all x