Mastectomy

[Teats4twins]

Hello just looking for some positive words and a hand hold!
I'm 29 with triple negative breast cancer recurrence. Original lump removed via lumpectomy only in December last year, lump grew back within a month. I had my mastectomy yesterday luckily all went well and now home recovering. Just wanted to hear others experience of recovery, what was your pain like? How quickly did you get back to normal ish life? How did you cope with suddenly feeling very unwomanly? I didn't think it would bother me too much but every time I look down I am bursting into tears. Any advice welcome!!

Sending lots of love TeatsforTwins So young for that as well.

I had a mastectomy at 48 and they gave me the option of having it then with no reconstruction or waiting a couple of months more with the cancer still growing inside me so took the delayed reconstruction option but its very hard. Physical pain not bad at all - a week of slight pain then nothing, the second op which was full node clearance - a week of moderate pain then nothing. Swimming in both cases once healed which for me was 3 weeks.

What is much harder is the appearance and the wait for reconstruction (Dec 21 to 2025!) - the scars have now gone from the first operation. I found the Ameona swim prothesis the best and wear it all the time in a bra with pockets (post surgery bra) and that is washable and looks good with clothes over. But also have found it tough especially when chemo then took my hair and gave me a swollen face. Its annoying when I finally get DIEP in 2025 that I will then have another two years of scars again. And then another op a year after that with further scars. I hate the way the NHS regards that as just cosmetic so you have to wait forever. Everytime I swim I feel lopsided. I have struggled tbh, distraction helps and also time has helped a bit with my face returning to normal and my hair growing. I also try and exercise a lot - 3 to 5 hours a week is supposed to halve chance of going to stage 4 and can include walking - and that helps me so much, I do walking in gardens with flowers and swimming. Still wearing nice clothes helps a bit, I made the mistake at the start of thinking my days of looking good were permanently over and just wore anything and that can make you feel worse. Hope you can feel better.

I had a single mastectomy when I was 31. I opted to stay flat instead of having reconstruction - I have seen friends with lingering pain and limited movement following reconstruction, and my priority was to be pain free and functional. I was very lucky with physical recovery, I felt somewhat tender for a few days, but no real pain. Make sure you do the exercises religiously.

I found it very difficult to look at my wound/scar at first. I was nearly sick when I first took the bandage off. I still don’t love it, but I quickly put my bra and prosthetic boob on in the mornings and then I don’t have to think about it for the rest of the day - with clothes on I look totally normal, and I don’t have any pain.

All the best for your recovery.

Hi. Sorry you experienced this so young. I was 51 when I had mine. I was back up and about quickly and within a fortnight I would say life was back to normal. Nearly 60 now, barely scars and I don’t even think about it any more. At my age, it’s one less worry though I appreciate that as a young woman you’ll feel differently.
I hope your recovery goes well 💐

Thank you all for comments and kind words. I must say I am already feeling a lot better this evening, just very sore. I decided to stay flat too for a quicker recovery, I have twin toddlers so want to get back to normal life as quickly as possible! I am dreading seeing the scar but I guess it's something I will just get used to. Having good health and a future ahead is the most important thing

You really will get used to the scar. Give yourself time - the way you feel when you first see it is not the same way you will always feel about it. I always think about the part in Harry Potter where Fleur says that the only thing her husband's scars show is that he is brave.

Get fitted for a properly fitting bra and silicone prosthetic (my hospital arranged this) - internet bras stuffed with bean bags are not the way forward!

I am 36, also with TNBC (primary), I have one more chemo session left then will have a mastectomy - haven't decided on what type of reconstruction, but I do want it - so either implant or that stomach fat one.

Dreading it but everyone keeps saying the surgery is the "easy" bit after the chemo!

Hope you feel better soon.

Had a single mastectomy back in 2003 age 49, and had my reconstruction done at the same time (saline implant/ latisimuss dorsi option)

The worse pain I had really was the site on my back where they had to cut to get at the ld muscle. That was tender for a long time. I had the op in March and was back at work a month later.
The surgeon did a great job on my reconstruction, I was never big breasted so that was a blessing. Didn't have a nipple tattoo, after everything I couldn't be bothered.
Never felt the least bit unwomanly, still wear fitted clothes. My DH always thought I was the sexiest thing alive and still does!

@RiverFlowers wishing you the best for your recovery too. Sorry you are in the midst of it too. I hope your surgery goes well. I haven't had any chemo went straight into surgery with discussions of chemo maybe after. Still uncertain of what to do at this time. May I ask how your cancer responded to the chemo?

To be honest, I am surprised they haven't gone with chemo as it's a fairly standard treatment for TNBC. How big was your lump? Mine started off quite big, it went from barely noticeable to around 6cm in about six weeks of me first noticing it so it was decided on chemo first to shrink it down, then surgery.

It responded very well to chemo, within the first cycle it had shrunk so much I could barely feel it anymore and by the third cycle, I couldn't feel it at all. A recent PET CT scan shows it has all but gone - however I am still going with a mastectomy. I am also having one or two lymph nodes removed as although the biopsies came back clear, there was one that looks a little swollen so taking that just to be safe.

If you do have to have chemo, it's not the worst thing. It's not great, but it's doable and they are very good at managing the side effects like sickness and things. Worst parts for me have been the tiredness and the hair loss - but both are temporary and hair grows back.

Give yourself time. You are still in shock and need to find your balance again.

I had a l/h mastectomy 30 months ago. They considered a lumpectomy but I wanted the whole thing gone, for peace of mind.

I recovered very quickly, in that I was on my feet within three hours, and out walking within 24. No pain, didn't even need paracetamol. I had a vacuum dressing & a drain which stayed in for a week. I suspect I had an outstanding surgeon. Or that I was very lucky. I chose not to have reconstructive surgery. I didn't want them messing with my back.

I spent a few weeks healing, getting my head around the change, sourcing prosthetics, tracking down decent underwear that meant I could get changed in a communal shop changing room without anyone guessing. Buying a decent swimsuit.

I sorted through all my clothes and replaced sundresses, evening dresses etc that I was never going to wear again. Made sure I had things that work for me now. Then I had to focus on coping with chemo which isn't easy. Buying a wig etc.

Dealing with the practicalities made me feel more in control. The journey isn't easy but you will get there, I promise. xx

@RiverFlowers my original lump was 19mm then 35mm by the time of lumpectomy. I was offered chemo but I chose surgery first. I was scared and just wanted it gone. I had two lymph nodes removed which were fine and clear margins. But by the time the oncologist appointment came along I noticed a pea lump on scar line, started the whole process again and yes it was the exact same cancer back again within a month. 9mm so I opted to get the whole breast off ASAP. Within 6 weeks it got huge and I am yet to brave the further scans on the rest of my body, feel like I have gone into complete fear mode.

The fear is understandable - it's a scary time.

I have had biopsies, mammograms with contrast, PET CT scans x2 (once before chemo and once mid way) and an MRI. Mine is only confined to the breast so they consider it early, which is a relief but hasn't made the whole experience any easier.

For me, once I actively started chemo - I felt I was more in control and doing something about it. Surgery is the final thing - but I will continue with immunotherapy for an additional six months (every six weeks) after surgery just as a precaution.

I wasn't offered surgery first, I was just told they were doing chemo first - as mentioned, I have had a really good response to chemo and the lump that was big went away very quickly.

If you do have chemo, it isn't as bad as you think.

Happy to chat more if you want to!