WWYD, mastectomy only or reconstruction

[mycatislickingherpaw]

WARNING: potentially upsetting post for women having gone through breast cancer.

I found a lump in my breast 2 weeks ago and was diagnosed with breast cancer a week ago. I passed a week thinking about death or, in the best of cases, painful, painful treatments and possible slow recovery. I have young children and I am their main carer, so you can imagine...

I just saw my surgeon, who told me that I’ve caught it so early that I will be fine. Hopefully further testing will confirm that.
I should be operated shortly, and I have been given the option of full mastectomy or full mastectomy with breast reconstruction (implants, a boob job basically).

When I was told that I will live I thought nothing better could happen to me. I told the surgeon, with other words, that I couldn’t give a fuck about having no breasts, they could even chop off my arm if necessary.
The nurse I spoke to at length afterwards understood where I was coming from with my thinking, but also said that I should consider the breast implants seriously. She gave me other options (grafting my own skin or doing the implants after the operation) but I don’t want to consider them as I have a decent phobia of operations/needles/IVs, so the least medical interventions I have the better.

I don’t know what to do. Can you help me?

1- i can take being alive over breasts any second of the rest of my life.
2- i want to have the least possible medical interventions because of my phobia. Implants, AFAIU, need to be changed every decade or so, might rupture, might have to be changed because of skin adhesions.
3- I will have perfect breasts when older (if I manage to live that long), which will look very strange to me (I could say will cause me psychological problems but obviously I don’t know for sure)
4- maybe I could use a mastectomy bra to suggest breasts and avoid all these issues?
5- will they feel strange to me? Will I be remembered daily of my cancer when showering etc, as much as a mastectomy? Is there a point getting them in that case?
6- they can cause a type of lymphoma in a very small percentage of women. My husband remarked that the percentage is absolute minute. Equally, I ticked all the boxes for this not to be cancer, and yet it is. I’m also in the small percentage of women who gets cancer despite everything.
7- my husband isn’t pushing me to get new breasts.

Equally:

1- I’m young, I don’t have to suffer psychologically or punish myself for the rest of my life when medicine has developed so much that I can have breasts, even if not the ones I was born with.
2- they probably will make me feel better about myself and my image.
3- I might regret not having the implants done straight away and having them done at a later stage would be more difficult, though not impossible.

I’m not really asking you WWYD, but if you have an opinion, would you share it with me? I don’t know what to do and I don’t have so many women to ask to.

Thank you.

Someone close to me opted for no reconstruction and has been happy with that choice for years. Clothing choices need a bit of thought but it's do-able, so definitely the right choice for some people. I am fairly sure I would do the same if the situation arose.

Have you not been offered a lumpectomy and radiotherapy as another option? I have had breast cancer, caught early so I was offered the option of that or mastectomy. I'm presuming that you've been tested for the gene which puts you at higher risk of developing it again so that's why you are having a double mastectomy? Sorry for the questions, I know how overwhelming it is and you have to decide quite quickly, but just thought I'd check that you'd considered all options (if it's appropriate, I only really know about my particular type of breast cancer).

I’d like to say thank you to all of you. I don’t know how painful talking about this is still but you are doing me a big favour sharing your thoughts and experiences. Thank you.

I need to get the genetic test done but it will take a while. I have dcis in one and stage 1 in the other, so I was told double mastectomy was the best option.
Having read a bit more about breast reconstruction and surgery options, I think I’d personally rather have both equally removed as well.

Oh, thank you so much also about the information on clothing. I have never particularly liked to use low tops (the irony!) so I don’t think that would be a problem. Money-wise we are fine, I don’t buy many clothes anyway, but I will go through my wardrobe and see whether what I have I would be happy to use with a padded bra.

DH's aunt had a double mastectomy and reconstruction with implants in one operation but no other treatment as her breasts were basically full of small cancerous lumps. She's happy she had the reconstruction at the same time.

I've got a scar above my bra line from my lumpectomy (I was stage 1). 6 months on it no longer bothers me.

Can you find a local cancer support group? Knowledge of how your local hospital does things may help you decide.

Can I just say, from the perspective from someone who has implants, that I have had them for 15+ years and you do not need to have them replaced unless you experience as issue. But they are meant to have a lifetime guarantee. I chose saline and didn't go to big. Just a small c cup and they look very natural. Hardly anyone knows they are fake and it's no big deal. I know some have bad experiences with implants so I just wanted to share my very positive experience. I have way more self confidence and look much better in clothes with them imo.

Apologies if this sound trite, but I think you should think about your 'relationship' as it stands now with your figure and your breasts as part of that, and factor that in to your decision.

What I mean is - if you are a curvy figure sort of person, with above average sized breasts and you like that and you are happy in your figure then to not have the recon would be a big 'negative' change. But if you are already small-breasted, maybe more athletic figure and tend to have a practical, more androgynous style, then the 'negative' change would be less iyswim? - and a recon might even result in a more dramatic change of 'body shape' than no recon.

Conversely - if you are curvy and big-boobed and in an ideal world would have preferred to have less curviness... or the opposite, you are fairly small-breasted now and have always wished you were curvier... then those are different scenarios to contemplate. Both should maybe be factored in to how you would feel later with or without a reconstruction - how your choices of clothing style, your own body image would be affected.

That is one thing that I would think through, anyway. I wish you all the best

Oh and contact your local hospital to see if they’ve a BC group- other women are often very happy to discuss their real life experiences with you.

My first question would be why not a wide locally excision? There are some clinical situations where WLE isn’t an option but not many for early cancers. Outcomes are much the same long term but physical recovery is better and psychological healing is improved. I’d ask why this wasn’t suitable for me personally.

When I was facing surgery I was convinced I’d want simultaneous reconstruction. My lovely and very skilled surgeon persuaded me otherwise. She was very clear that aesthetically better results were obtained by waiting a year to allow the size and shape to settle before deciding on which implant.

In the end I didn’t need reconstruction as my profile remains quite good with the WLE and a slightly padded tshirt bra. A very slightly smaller breast on one side. Scars are barely visible as most surgery was done through the axilla.

I've only read the op posts. I'm a breast surgeon - happy for you to PM if you want.

It's really common for the initial reaction to be something along the lines of 'chop off whatever you like, just let me live'. The vast majority of women though will be cured with treatment, and then have a long time to live with the consequences. If reconstruction would compromise the chance of that then it wouldn't be offered.

That said, reconstruction isn't for everyone. You're right that it's not a straightforward option. For some women, especially those whose sense of well-being isn't tied up in their physical appearance, and particularly in their breasts, it's not the right thing. This may be you from what you've said. But a double mastectomy is a big deal in terms of change from you now. Neither option is a now or never though. Gut feel, what is best for you? Do that.

It that's no reconstruction, and you regret it, you can have a reconstruction afterwards (although this might involve more steps to get there, and depending on if you need radiotherapy might mean implant only reconstruction not an option). There are also excellent prostheses that mean anyone looking at you clothed (and even in swimwear) would have no idea.

If that's reconstruction, and you regret it, the implants can be removed.

Regarding the rate implant associated lymphoma, the risk is 1/24,000. So very very small. And the risk of it being a significant problem that needs more treatment than removing the implant and capsule surrounding it is something like 10%. So 1/240,000 of a significant problem. You need to know about it, but in the context of you having breast cancer I would say this is largely irrelevant.

Hope that's helpful. All the very best whatever you decide x

I had my mastectomy 3 years ago, I chose not to have reconstruction and I don’t regret that decision at all. As a nurse married to a Dr I was very conscious of the risks of complications and wanted to keep everything as simple as possible.
Yes it’s annoying having to wear a prosthesis, and not having much choice of bras, and not being able to wear certain clothes. But I will never be tempted to go back and get the reconstruction, I’m just not interested. Honestly if you have any doubts at all then just have the mastectomy for now.
Oh and good luck for the surgery. Tip from me is start seeing a physio ASAP after surgery to help you with your arm movement, and prevent the scar tissue tightening. I had to pay privately to see a good one but she was worth every penny.

This thread is really interesting as I will have to also make this decision soon and am currently thinking "chop them both off and let them be". My surgeon also says this is a common early reaction so we'll see. Best of luck in making the right decision for you OP.

Sorry you are going through this. If you have the option to make changes later I would just have the mastectomy at first and see how you get on.

Every woman feels differently about their breasts. I absolutely hate having breasts. So for me I would not have a reconstruction because my breasts have always been an annoyance to me all my life getting in the way etc.
I hope all goes well for you xxx

Sorry to hear your news. I wanted to post as I'd like to point you in the direction of a good resources when thinking about reconstructions - there's photos of how they look and lots of peer support. Run by a fabulous, knowledgeable woman who has gone through it herself; it might help you. Look up Jo Taylor at www.abcdiagnosis.co.uk. The very best of luck with your choice, I hope it all goes well for you.

I think you don't want them, so maybe best to go with that. I would get them in this situation but neither option is right or wrong.

I know two people who have had reconstructions. I think they found it helpful getting it all over with at once. You'd really never know they'd had it done.

I had a single sided mastectomy without reconstruction 3 years ago. I would have gone for the reconstruction if I had been offered it but my BMI was too high at the time. I have since lost a lot of weight and I am having a Diep Flap reconstruction next month.

I hated only having one boob, I am really restricted with what I can wear (especially in the summer) as my remaining boob is quite large and the prothesis they gave me to put in my bra to pad me out shows if I wear anything with a v-neck.

If I was you and they have offered you an immediate reconstruction I would go for it, its often an easier operation if you have it done immediately as they can usually do it at the same time though you may have to have another small procedure on your other breast to even things up.

I hope everything goes well for you, its all really overwelming when you are first diagnosed but chemo isn't as bad as it used to be, as they have different drugs now.

I know of someone who had them reconstructed from her own skin from her tummy and they looked fabulous. If it were me and your risk is so low to not have to go through more procedures later (great!), I would get it done in one fell swoop of my own skin. One op, one recovery. One lot of psyching yourself up for a surgery. Done. Wouldn't care about nipple. Wouldn't care about scars. For me, the faff of the admin of the fake ones would be a pain.

Good luck!

Hi OP, I had to make the same decision earlier this year. I'm 33, so on the younger side. I knew from the outset that staying flat on that side was the right decision for me. My priorities were minimal intervention, no chronic pain, and retaining my mobility and functionality - I felt that my best chance for these was to forego reconstruction. I also didn't want to get stuck with a reconstructed breast that I wasn't happy with. Far easier to play around with prosthetics and bras to get a look and feel I was happy with.

In terms of aesthetics, it's not too bad. I'm tall and slim, bra size 34C. I have a slightly padded bra and a soft prosthetic (I'll get fitted for a silicone one later this year), and in my regular clothes I don't think you could tell from looking at me which is the real boob. My clothing style is more Cos than Victoria's Secret, so I don't think my wardrobe will need to change that much now that I am uniboob.

Do bear in mind that a reconstructed breast isn't a like-for-like replacement for a real breast - for example, it will most likely be numb. I found that the surgeons were generally too proud of their reconstructive skills to give a balanced view on the pros and cons of surgery options - the oncologist had a more objective viewpoint.

Hello all :)
Thank you so much for all the further messages. They help me and hopefully they will help other women reading the thread.

I have not made up my mind yet but I’m tending towards mastectomy only, as all the other options require a level of intervention that I don’t want to go through with. I’m sure I will be mourning my breasts but hey ho, in the grand scheme of things it’s a small price to pay.

The operation is tomorrow, I’m seeing my surgeon later, so I have some more hours to consider my options.

I hope you are all well :)

Sounds like you're made your mind up. I'd not get a reconstruction either.

Good luck with the OP tomorrow.

Best of luck with your op. I had a single mastectomy 2 years ago and opted for diep reconstruction. I think I would still make that choice today but I am frustrated that all surgery/care/consultation appeared to be about how I’d look afterwards, when much more important is how I feel. Mentally I am good but physical sensation shifts so much following the removal and exacerbated by diep (large part of my abdomen remains fairly numb). My new boob keeps a different temperature to my proper one which makes it feel alien sometimes. Overall, I wouldn’t have wanted to be lop-sided but maybe would have stayed flat if I had double mx. I am always reminded that I had cancer every time I undress. I get ragey when bc nurses and doctors tell me how they can’t tell I’ve had a reconstruction. I CAN - superficial looks aren’t everything and bc medicine is very poor at recognising that! I think in your shoes, I would see how you feel after mx.

Hope all went well xx

I had a double mastectomy 6 years ago and sometimes wish I had reconstruction surgery. I was older (54) and big breasts and the surgeon thought it would be better not to go through that. I am also a diabetic, had some problems healing, and just wanted it done. You may feel different a few years later because right now your just glad to be alive and could care less about your breasts.