Double mastectomy

Going through breast cancer treatment Surgery
1

Hi 

having had breast cancer twice i now need a double mastectomy I am 55 in total shock and struggling with all the decisions that come with this, decision making has never been my strong point, I’m Hoping to have reconstruction  I would be very grateful if anyone could give me any advise on dealing with my emotions what it’s really like to go through it all and anything regarding my months ahead, I have only been told this week so is it likely to be a long process are we talking weeks or months for the actual surgery what happens next and all that  

many thanks Tracy

2

Hi Tracy

You must be in shock to be diagnosed again after all this time. However, your team clearly has a plan for you so you need to trust you’re in good hands. I only had a single mastectomy but I wish I’d had double, if only for the way clothes hang. I could go flat-chested (as I was most of my life) but lop-sided with a boob that keeps changing size according to whatever treatment I have is frustrating!

Do you know if you are having your lymph nodes removed because that will make a difference in terms of what to expect afterwards. One thing I can say is you are now consigned to a lifetime of daily moisturising and exercise, reconstructions or not. The rest of the plan may be dependent on histology after surgery. You may have chemotherapy and radiotherapy afterwards or just one of the treatments. You certainly will have daily hormone therapy for x number of years.

The important things is that it’s worth it. No matter how sore you are or how crap you feel, this is your lifesaver. Your emotional turmoil is a normal reaction to handing control to a team of surgeons and oncologists. First bit of advice is, if you want to know something, use your breast care nurse or have it written down for your next meeting. Do not resort to Google. It has no idea who you are, your unique diagnosis and your triggers. It’s toxic and, from personal experience, potentially terrifying. That’s your temptation but your no-go area!

There are some excellent videos which help you relax, go to sleep, reduce anxiety. Just go to You Tube and search for what you want. My favourites are from Progressive Hypnosis. I’m currently working with Cure Anxiety and Boosting my immune system but I started with Manifest Healing, which I strongly recommend. It took me through my primary breast cancer treatment! There are also useful videos for Tai chi, Qi-gong, yoga, pilates etc. 

I hope others reply with tips for dealing with the emotions, You’re on the roller-coaster now, I’m afraid, and the best thing you can do is go with the flow. All the best 

Jan x

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Hi Tracy

I had a single mastectomy on my 2nd diagnosis and then had the other breast removed and both reconstructed on my 3rd diagnosis. In my case I made the decisions on the 2nd mastectomy and the type of reconstruction.  I was referred to a surgeon and he examined my physique and advised on which he thought was the best for me.  I had the DIEP reconstruction.

There were a lot of consultations before surgery and loads of opportunities to ask all the questions I wanted to.

I was told that the hospital offered counselling so i took them up on that.  It is a lot to deal with and i felt that it helped. I cried a lot but there is nothing wrong with that.  It may be your hospital offers the same so it may be worth asking the question. 

This is a major thing to happen in any woman’s life so take your time.  Acceptance took me quite a while to achieve.   

4

Hi Traceyanne

Thought you might like a nice positive story! 

I had my third bc diagnosis last year, and long story short had a double mastectomy in January this year, at 42. I won’t tell you it was a walk in the park, but 6 months on I feel really good and well on the way to getting my life back to normal - with the added bonus that that obviously high bc risk is now next to gone.

The worst part for me was the decision-making. How do you know how you’ll feel, after something you’ve never tried before? Thing is, you’ve done so much of the hard stuff in the past already, you KNOW you’ll get through this! In hindsight, I’m amazed I spent so long arguing all this - it seems like such an obvious best choice given my circumstances. And yes, probably I was just afraid of the ‘after’ - but now I’m here, it’s not so bad as all that. 

For me, I found ways to look for silver linings. I was on the over-large side previously, imo, so being offered a reduction at the same time was such a bonus. Another - if you’ll excuse the flippant language for smile-inducing purposes - I’ll never have to face the ‘girls’ heading south towards my knees My best mate has suggested she’s going to stop standing next to me with my new perfectly perky boobs lol!

Once the decision phase is done, the dreading phase of the actual surgery kicks in, but as a friend said to me: all you have to do is show up. You get to sleep through it all, nothing to do - and the surgeons do this day in day out. When you wake up, there’s an uncomfortable phase for sure, but from that moment everything is just a slow amble through recovery and towards normality - take your time with it. Treat yourself with kindness, allow a bit of indulgence.

Once you have a little more info about the route you want to and can take - immediate or delayed recon, implants or own tissue, any further treatment needed, stuff like that - people here will be able to offer more advice for the specifics, so please do come back. Happy for you to drop me a PM if you like, too.

As for timings - so dependent on your circumstances. They’ll do it as quickly as they need to, rest assured. 

Wishing you all the very best, it all sucks, but you’ve got this - I promise! - and we’re all here for you xx

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Hi @Tracyanne  

I too have a positive story so far. At 51, I was diagnosed with HER+ BC in October 2020 and had an immediate mammoplasty where they removed about 1/3 of my left breast. The pathology results showed the margins weren’t clear so I was booked in for a completion mastectomy after my chemo finished. However, due to family history and the presence of LCIS in my right breast, we (joint decision with myself and the MDT) opted for a bilateral mastectomy which was carried out on 23rd June this year. Due to the recent chemotherapy, I wasn’t allowed an immediate reconstruction but I do know people who went straight to silicone implants, which was done at same time as mastectomy and they are happy.

What to expect: When you go into hospital they will mark up your chest with a felt tip pen - it all feels a bit surreal. Ask plenty of questions about where the scar will be, recovery etc. you then go into surgery and you wont know anything about it til you come round in recovery. I had something called a PICO-7 dressing on afterwards which is a vacuum dressing and it ran horizontally across my chest from arm pit to arm pit. With the Pico dressing you have a tiny little pump on each side which sucks the air out of the dressing to keep it sterile. It’s mildly irritating with its buzzing but is reassuring that it aids recovery. You will also have drains attached on both sides. These are really an inconvenience as they are attached with a stitch. You have to carry them around with you everywhere. You can buy mastectomy PJs which I would recommend - they have drain pockets which make things much easier - I got mine from Asda Online. If you don’t have those, I would recommend getting hold of two drain bags (your hospital might provide them but mine didn’t, so make sure you ask). You keep the drains until they drain less than 50ml fluid - for me that meant mine were taken out by the district nurse team on Day 5.

Pain wasn’t too bad - i just made sure I asked for the pain killers regularly - i was offered codeine, ibuprofen, paracetamol and Ora-Morph. The latter was a godsend. I cant tolerate morphine in injection form, makes me throw up, but this was amazing! I was allowed home the next day and was given codeine but to be honest I didn’t need it after a few days and was fine on ibuprofen and paracetamol. The wound is now completely healed 7 weeks on. If you haven’t had a reconstruction, I would avoid wearing a bra until it is healed as any rubbing against the wound will be sore. You should be given some ‘softies’ in the hospital. These are soft foam boob forms that fit into a mastectomy bra. Regarding the bra, I personally prefer a front fastening one as its easier as your arms will be sore after the op, especially if you have had nodes removed too. Some great ones on Nicola Jane website. Once your wound has completely healed you can get a prosthetic from your Breast Care Nurse - I haven’t collected mine yet.

For me, reconstruction will be a DIEP (tummy tuck) one. And to be honest, I’m so fed up with being in and out of hospital for the last 10 months, I don’t mind waiting a couple for years for it. If you choose to go straight to silicone reconstruction, make sure you talk things through with your surgeon as there are different weights and shapes available. I’ve heard of people, showing photos from google to their surgeon to make sure they get what they want - remember it’s your choice but the surgeon will guide you as to what might be best for your shape and chest wall. After reconstruction, you will need to wear a sports bra/tight fitting bra for quite a while to keep them in place - hopefully someone who has had that procedure will comment on here to let you know what to expect.

Emotionally, I’m doing ok. The biggest shock for me was looking down at my chest for the first time. I thought I would be upset seeing the scar but honestly, for me, the biggest shock was seeing my tummy for the first time!! Usually there was two big boobs in the way. You will adapt though and as has already been said, you will need to keep stretching and moisturising but that just becomes a new routine. 3 weeks before the op, I started a course of arm strengthening exercises which I think really helped me. Your BCN should be able to help with some counselling as its a big thing to get your head around.

I hope this has helped and that you are confident to chat with your surgeon about your options. Please feel free to message me if you have any questions. Good luck xxx