Need further surgery (mastectomy after lumpectomy) and thinking of no reconstruction

[Rose961]

I am in the same your condition. Awaiting the date for the Mastectomy and the reconstruction is something very scary to me 

I just want to solve the medical issue and keep the cosmetic part away from my future life.

I hope that we you have solved your problem and I hope you are enjoying the life back ❤️

Warm wishes,

Rose

[Rose961]

Hi Scientista mafier,

I am very close to make my decision mastectomia without rec, I am very glad about your message, keep me positive!

I wish you all the best!

Rose

[Rose961]

Thank you for responding ☺️ I am 61 in April and have young family. More interested to be well soon and keep looking after them .

I am considering to avoid the reconstruction because it's a long hours under anastethic and long time to recover .Using part of my body I will end up with more scares on my body, using implant, I will have a 15 year old breast and the other respecting my age. Nothing is simple but in my circumstances I have a medical issue to resolve more quickly than others things and may be the reconstruction could be contemplate in a  second stage! May be wrong but these are my considerations.  Warm regards 🙂

[karenNF]

Hi Rose961,

I just spotted your post and wanted to wish you well for your appointment today. 

I am in a similar situation DCIS high grade left breast 8 years ago, 2 operations and radiotherapy. Diagnosed in right breast January operation in February but no clear margin.  Seeing Surgeon next week to discuss mastectomy plus minus reconstruction.  I am unsure whether they will be able to do matching on my left. 

Let me know how you got on. 

[delly]

@Rose961  - Hi Rose.  I hope you're appointment goes well today.

You said you aren't keen on recon, but didn't say why? Have you already discussed any of it with your surgeon??  Immediate Implant recon is a lot less involved than immed self tissue recon, less scarring to both breast and body, less healing time and less risk of infection. But maybe you're not too bothered to have a recon?  Also depends on whether you have other health issues that may prevent it, and the condition of your skin for healing, elasticity etc.

Also, this thread hasn't been used much since Dec. Have you checked other of the more recent Surgery threads that may be more active, to answer any questions you may have.

Good luck with your treatments, Rose.  Delly  xXx 

[Rose961]

I am sorry to hearing that and I hope that you have made a wise decision. Sorry that nobody reply to a such important text. I am living the same moment as yours.  Feel completely confused, tomorrow the meeting with the Consultant for a Mastectomy decision. I am 61 and not very keen on the reconstruction, Do you have any thoughts for sharing? Xx

[dippy]

Sorry to hear the news of your results 😘.

no words of wisdom for you im

afraid - just good wishes.

my results were postponed from Monday until tomorrow 🤞🏼🤞🏼
xxx

[jules_n]

Hello again, 

I had to go back daily to the hospital to have the drain checked and emptied, until it was removed on Day 4, once the fluid in it had reduced. They also checked me over and adjusted my pain medication , which was helpful. Once the drain was removed, I was a lot more comfortable, and could get a bit more sleep, but prepare for those first days being a bit rough. They gave me a bag to carry the drain around in. I had a clingfilm type dressing, so I was able to have a proper shower from Day 4, until then it was just what I could manage, with help from my husband.

I didn’t wear a bra at all for the first few days, just a soft, button up shirt and cardigan. The type I like best since then are just a set of M&S Bralettes, I’m 34C and bought Medium. They have removable pads too, which you can swap with your Comfie if you want. I also quite like wearing a scarf or shawl if I’m going out, while my confidence is building! Normally I would wear a camisole or vest too, but have found them too tight under my arm so far. My scar is 4 to 5 inches horizontally across my chest, but most of the discomfort is from my armpit, presumably from where the nodes were removed. I do the exercises twice daily.

I haven’t seen anyone at the hospital for nearly 3 weeks now, although I was given all the contact info just in case. My results aren’t back yet ☹️ so I’m trying to keep busy, definitely able to do most things.

Thinking of you, hope it all goes well,

Jules XX

[Claire45]

@YorkshireJ 

I really just want the quickest recovery and the least chance of complication. I'm single, haven't dated in years so no one sees me naked any way. Little bit worried about how I will look in clothes (love a horizontal stripe) but will figure that out after. I was originally offered the 23rd Dec but I am a single mum of two and didn't want my kids to have a totally crap Christmas. Luckily I was offered the 29th. Also it gave me another week post Covid infection (had Covid end of Nov) which can only be a good thing. 

[Jaybro]

Hi

I’m not the best person to ask about bras as I gave up. I’d always been no bigger than a 34B so I wore very flimsy things. The fortress bras for post-mastectomy were a shock and a huge discomfort.

From what I remember, The first two weeks I went braless as I had a dressing on and for the first week, a drain attached (that’s only if you have nodes removed). After that, I’d bought some cheap comfort bras and I tried those. Now I will admit the princess with the pea has nothing on me but I found seams rubbed the scar which went under my arm so I’d recommend going for seamless if you can. After that, I wanted tight fitting as movement was uncomfortable and my goddaughter found me a brilliant sports bra from Under Armour, which was tight across the chest but had a 3” broad band underneath. That was very comfortable.

Bras have moved on and more retailers are including post-surgery bras but you have to be so careful. I bought one that had a light pre-formed cup. When you put in the prosthesis, it warped in every direction imaginable. Very poor design. Nicola Jane is the NHS recommended range. I found Amoena is good. I have a lovely Stella McCartney front fastening bra that was a free gift from her to the first few who applied but it’s lace and it itched a bit. I tried several from Amazon and most got sent back.

My advice would be to forget the pretty and go for the smoothest, plainest you can find. Once you decide what size is most comfortable with your prosthesis (you’re entitled to one a year - no allowances for boob growing because of hormone therapy - but you obviously buy your own and Amoena is the best supplier) then stock up on something comfortable because they sell out and change too often. And, unless your single boob is huge, braless is always an option; a little ungainly aesthetically but disguisable with a scarf if you don’t want stares.

Happy hunting and good luck

Jan aka Ms Monoboob

[YorkshireJ]

Hi Jules,

Thank you for replying. You’re a few weeks ahead of me and it’s brilliant that you’re already healing well.

I’ve only just learned about the drain. Did someone come out to you to check that when you went home? How did you carry it and did you tend to be less mobile while that was in? How long is your scar and how long did you have to wait till you could wash and shower? Did you have lymph nodes out? I’ve had that done already and have a bit of cording which I’m hoping will be better by the time I have my mastectomy.

I’m so glad that others have decided to go flat and it’s not just me. If you have any recommendations for post-op bras (types and where to buy from) that would be brilliant. My BC nurse has said the local hospital will measure me and send me home with one bra and softie, but I’d really like to order some more so that I can wash them and have others to wear. Are you in a different type of bra now you’re healing?

You’ve written exactly what I feel about unnecessary complex surgery. I think this journey is hard enough!

xx

[YorkshireJ]

Thanks for your reply scoentismafief.

It’s so reassuring to know there are other people who made that decision.

if you have any advice about bras for post-op and longer term, that would be much appreciated!

x

[YorkshireJ]

Aw Anthea24,  thank you for my hug, and for your support. Good luck with your results,

xx

[YorkshireJ]

Hi Jan,

What an uplifting reply, thank you! I love the phrase monoboobery. The social media hype tends to sure reconstruction, so it’s reassuring to hear from people like you, who’ve been there already. I’m trying to be proactive and buy some post-op bras because the hospital apparently only provides you with one and one insert. Any recommendations would be welcome 😊. I ordered some quite snug fitting front-fasteners for my lumpectomy, but these rub a bit and my skin is quite red and sore where the dressings were.  But if I try to use a more comfortable, but less supportive, bra the pain from seroma is increased quite noticeably.

That’s a good point about chemo, although I do fear it would make me ill. As you’ve reminded me, averages hide a huge range. I wonder if the genome testing might be useful in making decisions and will discuss that with my team.

Go Ms Monoboob 😊! I hope I will be confident enough to do this!

xx

[Jaybro]

Hi from an adopted Yorkshire lass.

I’m a strong advocate for what I call monoboobery. I had my mastectomy in 2018 and it was assumed I would want a softie (padded prosthesis in general sizes to pop in your bra) and then a prosthesis. I have countless mastectomy bras and two prostheses (I gained weight on hormone therapy) and I’ve decided during shielding that I’m going to go flat out for monoboobery. If it bothers anyone, tough. It’s far more comfortable than the fortress bra and prosthesis that tends to veer to the centre, pulled by the wight of my real boob. You just have to adapt your wardrobe as horizontal stripe tend to waver a bit!

I too was terrified of chemotherapy as I have emetophobia (fear of anything vomit-related) but the hospital bent over backwards to accommodate my quirks and fears and I’m glad I did it. I never was sick, after all that agonising. If your health condition puts you at any risk, they will discuss all the options but don’t be misled by the statistics. You might get told that chemo will increase your chances of full recovery by 2%. Hardly worth it? Sounds piffling but it might be 60% or 100% for you and 0% for others. I would always say go for anything that will strengthen your chance of avoiding a recurrence. But that’s a personal opinion. 

The fact that your nodes are clear is excellent. If it helps, I had two lumps of different types and 19/21 lymph nodes infected yet I’d had a clear mammogram 6 months earlier and my first ultrasound showed nothing, My breast surgeon was shocked that the tiny biopsy he did on two tiny bumps on my areola showed breast cancer. Then it was test after test. I had 4 diagnoses in as many weeks. Being HER positive simply means different chemo and treatment options. It’s being negative for all three that is the worrying result.

My advice would be to trust your team. If they suggest a treatment, it will be something you will benefit from. No surgery they do is unnecessary and those foreign bodies added to your system can do powerful work to help ensure you don’t have a recurrence or a spread of cells elsewhere in the body. It happens (you should see my eyelid - and I had the full works but I also had a tumour that was triple negative). I would always say take what’s offered and stay away from Google. If you have questions, the nurses’ helpline here is brilliant. Googling can be disastrous.

Having a mastectomy can be traumatising but there are choices after that. You may choose reconstruction if two breasts is essential to your sense of self. You can wear a mastectomy bra and prosthesis and no one will know but you. Or you can adopt monoboobery, comfortable but taking a bit of courage (I was shocked the first time I met a woman openly flaunting her unbalanced chest).

All the best

Jan x

[Anthea24]

Hey,

I just wanted to send you a virtual hug 🤗 

You are a few days ahead of me; I’m day 9 post surgery, and I haven’t had my results yet.

I can’t begin to imagine what you’re going through right now, I just know that our journeys seem to come with constant kicks to the guts don’t they.

If I was given the same news as you, I think I would be inclined to got fully flat, mainly to get it all out. 
whatever your decision; good luck, stay strong and keep telling yourself how bloody amazing you are ❤️
xxxx

[scientistamafier]

I had a mastectomy in August 2020 after a diagnosis of DCIS. Originally the surgeon proposed a wide local excision, but an MRI scan found further areas to be removed making mastectomy the best option.

I chose not to have any reconstruction. I also don’t wear a softie or anything. Totally happy with how things have gone.

[jules_n]

Hi there YJ,

I had a mastectomy on 23/11. Our local hospital doesn’t do any reconstruction, but the breast surgeon there has an excellent reputation, so I opted for mastectomy with an idea I would have further surgery in the future, probably after finishing radio and/or chemotherapy. But actually I’ve decided I’m OK with being flat on one side. The wound is healing well, and I ordered some bras and crop tops to hold the soft prosthesis, and I think it looks ok. I’m an active 62 year old, and I’ve seen some nice swimsuits and vest tops online, which should be fine. I don’t think I want to put myself, or my family, through quite a complex operation and recovery. At the moment I’m grateful for my good recovery so far, but obviously anxious to hear what the next step will be.

Just come back to me if you want any specific information about the op.

Best wishes,

J.

[YorkshireJ]

Hi Claire 45,

It’s a very difficult decision isn’t it? What factors have swayed you towards your decision?

The dates are tricky too at this time of year. I could have gone for 22 Dec but felt that was a bit too close to Christmas and lower staff cover, especially as our local BC nurses are off over Christmas. The 29th is good because people should be back in by then.

x

[Claire45]

I am due to have a mascetomy on one side on the 29th Dec. I am 45 and not planning to have reconstruction. I hope I've made right decision! 

[YorkshireJ]

I had a left-breast lumpectomy and sentinel node biopsy 10 days ago. Went to discuss my results today and it was mixed news, which has left me in shock and confused.

My invasive lump was smaller than thought, 16mm, and nodes were clear. But, the grade was upped from 2 to 3 and there was a smattering of DCIS all around in some fatty tissue surrounding the invasive lump. This worried the team because none of this had showed on any of the scans. I also found out that I’m HER2 positive, as well as ER and PR. 

The plan is to have a mastectomy and then to reconsider chemo or radio, which terrifies me. I’d really like to hear from people who’ve had a mastectomy, particularly anyone who has gone for no reconstruction, which is what I’m thinking of. I’m 60 and figure that looks are really not that important to me, but I AM too scared to have unnecessary ops or foreign bodies put in and the associated risks of that.

I’m also terrified of chemo as I’ve got an underlying endocrine condition, which might make that very very difficult. 

Has anyone else gone flat on one side? Are there other options in this case? Are there any other questions I should ask?