Mastectomy recovery advice

[Rockinghorse2019]

Hi I have a single mastectomy next Tuesday with reconstruction for DCIS. I’m really anxious and think I’m just avoiding anything to do with it. Just wanted any advice on recovery and what u should take / need at the hospital and when I get home. I also have a 2 year old. How bad actually is it. Or maybe I should ask that question. I’m very scared. Do they do lymph nodes as standard? As that is worrying me too.
Thanks in advance x

If you go on Breast Cancer Now or the Macmillan forum you'll get lots of advice.

I had a lumpectomy so can't really advise.

I know they do tend to take the sentinel lymph node at least, I had 3 taken all clear.

Hope you are starting to recover. What was your reconstruction? I had the lat dorsi flap, which was probably harder to recover from than an implant, but not as hard as the abdomen flap one. I took 6 weeks off work, stayed in bed for the first few days, then slowly pottered about the house, doing more each day.

Take it day by day and accept any help offered, especially for baby sitting! I had weird dreams on the painkillers, and was carrying my drains bottle around for some time. I also got fluid building up in my back which felt like I was wearing a hot water bottle and had to have it ejected with a fat syringe. Couldn't feel a thing though.

Don't worry about what you look like yet, the shape and texture will settle down. YOU MUST DO YOUR EXERCISES. I can't emphasise this enough - it will help keep away lymphodema which is when your arm swells with lymph fluid. I had several lymph nodes removed in my axilla but was lucky enough not to get swelling.

I am years on, my first was a lot harder to deal with than my second, but probably because my first was on my right and I knew what to expect the second time round. These days I have full movement back but less sensation.

Look at the longer picture, the next few weeks will be tough but you are through the worst of it and should be around for your DC. You will get through this. Best of luck xx

Thank you for replying. Had the operation on Tuesday. Had silicone so got a very tight surgical bra on which is uncomfortable. But not in too much pain. I have slept a lot today.
Feeling quite anxious about the lymph node biopsy result. Did you have DCIS both times?

Sleep is good for healing, rest as much as you possibly can. Are you back home yet? I stayed in for 8 days the first time round (needed a blood transfusion), and only 3 the second (was very keen to get home).

DCIS is unlikely to have spread to the lymph nodes (that's the 'in situ' bit, which is why it's the best cancer to get), but they take some nodes out anyway to check. And even if it has, it will be caught very early so that gives you the best possible chance. Waiting for results is difficult.

I got DCIS twice, the first was discovered by getting mastitis which cleared with ABs then a few months later I started growing a lump, which went from a pea to a grape to a plum to a satsuma over about 2 months. I had a lumpectomy first but then the full mastectomy on the right hand side. Then I was in their books and had mammograms every year, until 3 years later I was called back in and they said the mammogram had found calcifications in my left breast. Cue a lot of me saying 'bugger', more investigations and then finally my second mastectomy, which went much better. Same surgeon, same hospital, I even got them to take photos of the surgery as I was interested in seeing what happened under the knife. I think I was a lot more positive about the second one which helped.

Most people don't get it twice, I was unlucky. Make sure you go to your mammogram appointments when called.

Thinking of you, DO YOUR EXERCISES xx

Thank you for your reply. I was out the next day but staying with my parent’s as I have a 2 year old and still got the drain in so worried he will knock me.
I was worried this morning as it felt really swollen and hard. Seeing the surgeon on Monday to check the wound. The cut is over the nipple so lost that. Haven’t dare look yet.
Did you have any other treatment?
My boobs were small so he has had to put a bigger implant in. I’m going to be uneven!

I had the drain for a few days, it's odd when they pull it out - just a pulling sensation on the inside. No pain though.

It's good you're staying with your parents, esp with a 2 yo! If you only had the op on Tuesday it's not surprising it is hard and swollen, mine took weeks to settle completely. I lost my nipples too - but had a further op to reconstruct those and then get them tattooed.

I didn't need further treatment (radio- or chemo-) as I had clear margins, but they did put me on Tamoxifen for 5 years after the second one, so I'm on that for another year.

Your unevenness will probably only be noticed by you, and if it bothers you that much you can always have further work done. I am now considering fat transfer to fill in the parts on mine where I have lost volume, but honestly, they don't bother me that much.

Because mine are muscle I can move them independently, which is weird, and they do odd things when I climb a ladder. You shouldn't get issues like that with silicone though.

When I first looked I burst into tears - it was all just - different. But it all settled down and got better and it's just me now.

Write down any questions you have for the surgeon, and good luck for Monday.

Thank you appointment went well on Monday and seems to be healing well and the drain was taken out. I still haven’t looked. I’m starting to drop down the pain killers only taking cocordimol at night and just paracetamol in the day. but have to wear this compression band which hurts and makes me feel sore.
Get the lymph node and pathology results next Monday. Petrified it could be something bad. But sensible me knows what you said @Wildlifeandstars about DCIS.

Could anything go wrong at this stage? My anxiety is sky high xx

Glad the appointment went okay and you have got the drain out. Path results on Monday too - hopefully they'll show the all clear with 'margins' which means that they got it all. The waiting is bad, but remember you are now in the system and they know what they are doing, so you need to trust them. Even if it does go all tits up (in a manner of speaking) it is still really early and you will get the best care and treatment. But as I've said before, it's in situ, and one of the best cancers to get. I will keep my fingers crossed for you over the weekend, keep yourself busy.

The compression band will be to help stop lymphodema, so needs to be tight as heck, especially while you are still swollen. I tried to avoid looking at mine properly until about a month after my op, it's easier when the swelling has gone down and the scars are almost healed.

Don't think about what could go wrong, deal with that if it happens, and try and relax (easier said than done). Keep focussed on your DD.

Do your exercises - just a little, a few times each day. You should find they get easier each time, and you can reach/stretch a little more. xx