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

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 

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

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.

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

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