Double mastectomy and reconstruction (implants) soon- any feedback welcome….

Hi there, I'm one of the champions here in this group and just noticed your post hasn't had any replies yet, as the site is quite busy.  I haven't had the experience you're looking for, but my response will bump your post back to the top of the list and hopefully someone will comment soon. Best wishes for your surgery.

Hi I had a double mastectomy with immediate breast reconstruction with implants. My experience overall is positive.  I also kept my nipples. Obviously my breasts feel different which gets getting used to. I didn't want to go flat and so this for me was the best option.

Yes they look OK but they don't feel the same. The breast with cancer healed differently.  I was pleased there was no cancer in my other breast. 

A good bras really helps and I invested in amoena bras. They had a shop at Guy's and you could try them on.

The drains were a pain and it was great when they came out.

You are entering another world and so I advise a step at a time.

All the best

Thanks Ricki, that’s great to know. I’m just at the very start of my diagnosis

Thank you Ricki. I know this is the best option for me but am nervous . Your reply really helps. Hope you are all healed and well now x

Hi Golightly,

I had a mastectomy with immediate implant reconstruction 2.5 weeks ago, so I completely understand how you're feeling right now. So far, things have gone well overall. There have definitely been ups and downs — the drains were probably the toughest part — but my recovery has been smooth.

At the moment, my reconstructed breast is a bit fuller than my natural one, but my consultant reassured me that as things settle and heal, the size difference should even out. I’ll also be having radiotherapy on the reconstructed side after I finish chemotherapy, so I’m aware there may be some side effects, which my consultant explained to me beforehand.

Whatever you decide, I hope it’s a choice you feel confident and at peace with. Wishing you all the very best on your journey — you’ve got this. 

Hi Recon

thank you and I hope chemo goes as well as possible for you. I have had 8 rounds pre surgery and am hopeful of no radiotherapy afterwards. I think I am just scared of the pain and it being such an irreversible operation but it’s necessary! You sound very positive. I hope you continue to recover well x we can do it! 

Hi Golightly,

Thank you so much for your kind words—they mean a lot. You're right, it's such a daunting journey, especially with the thought of surgery and everything that comes with it. If you don’t mind me asking, how did you get on with the chemo? I’m quite nervous about starting it, especially the idea of losing my hair. I have very long hair and it's something I’m really anxious about. Did you try cold capping, and if so, did it work for you?

Hi, so I had chemo every fortnight. I had 4 lots of paclitaxel then 4 lots of EC. Paclitaxel was ok- achey and tired after day 3 (when the steroids wear off). Then a few days feeling like I had bad flu then ok after day 6. I also had injections to stimulate white cell growth which were very painful first time but no problem after that. I did feel tired.

EC was worse for me but I had a high dose every 2 weeks and the effects of chemo are cumulative. Some people find it fine especially if they have it 3 weekly. I did struggle. I had a lot of nausea, stomach issues, tiredness.My ears and throat hurt all the time and any ‘crinkly noises(like opening food wrappers ) were unbearable.  was also a bit more emotional! I couldn’t taste properly or do much after day 3 which was frustrating and I only picked up just before the next round. 3 weeks after my last I feel normal but get tired quickly. hair all fell out day 17. I also had long hair but it just came out in clumps. I didn’t cold cap as the first chemo took 5 hours anyway. I am bald and b sad about it. As soon as it’s long enough I will get extensions! My skin is very dry and now my eyelashes and eyebrows are falling out. But they will grow back! Good luck with all of it - it’s crappy but we will get through it and then it will be in the past! xxx

Hi, I had my first meeting with my oncologist today, and I found out that I’ll be getting the same two chemo drugs you had – 4 rounds each. I’ll be starting with EC first and then moving on to Paclitaxel. After reading what you went through, I’m feeling quite anxious about how everything will be once I start treatment.

I also asked my oncologist about cold capping, but she said she doesn’t recommend it and that it’s difficult to manage. Did you also have to take the vaccinations they give before starting treatment?