Anyone requested a double mastectomy?

Going through breast cancer treatment Surgery
21

Sorry to hear what you’ve been going through. I hope the therapy is helping.

I keep telling myself it’s life saving surgery, so it needs to be done, but it’s also a huge mental impact, and one that I will be reminded of every day for (hopefully) many many years. I had a hysterectomy 9 years ago and have just one ovary left, so to loose a breast, it feels like all the biological bits that make me a woman are being taken away. I don’t know if I need chemo yet, but to loose my long blonde hair too, just makes me cry.

When I knew I needed a hysterectomy I felt okay, it was only afterwards it hit me, I was 33 then and the impact it had was more significant than I thought it would, and I couldn’t even see I was missing one. Now I’m 42 loosing a breast, I’m really not sure how broken I’m going to be.

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22

Hey @_jm - I totally relate. Do you mind me asking why you had a hysterectomy?

The loss of one’s womanhood is what’s hitting me the hardest. The hair loss, losing my fertility and now one breast. I’ve explained multiple times to the surgeon and the team that I don’t think / feel like I can do it. The impact psychologically terrifies me. (Chemotherapy absolutely destroyed me physically and mentally) & there were times it was scary.

I genuinely have no idea what to do / how to handle it as I’m aware of the risks in delaying but equally see both options as incredibly high risk to my health and wellbeing.

Much :heart:

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23

Hi Sbee,

I have endometriosis and adenomyosis, the hysterectomy helped ease the pain. Over the years I’ve had 8 surgeries for it, so now I’m left with scars and adhesions which cause me pain. I told my consultant I’d never have surgery again, but never thought I’d be having surgery for something else! This is why I’m also reluctant to have a DIEP, I can’t stand the thought of more scars and pain on my stomach.

Have you had chemo first then, or are you further ahead on your journey? Have you managed to get some counselling, therapy? I think it’s something I need to look at.

It’s all so brutal and barbaric to me, medicine hasn’t advanced enough, it’s still cut it out, take it off, the only thing that’s civilised is the anaesthetic while they do it!

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24

Ah, @_jm - I had a feeling you would say that. I have endometriosis too. I didn’t have a hysterectomy but have had surgery twice. I think about it often.

I totally agree, it’s absolutely barbaric. And my worst nightmare. I find the team so casual about it. X

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25

Yes, I had chemotherapy before surgery as I have inflammatory breast cancer. :broken_heart:

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26

Hello neighbour, i hear you.

You have been through so much. Hysterectomy, ovary removal and now this. And still in your 40s! And the current situation is full of uncertainty given the treatment plan is not clear yet due to a prognosis in stages. It is a truly tough situation. Really tough. No wonder you are anxious. No wonder you wish to try to have more control over the situation by wanting more control over your other breast removal. Even writing this stuff sounds awful. A language none of us women want to use.

It is all entirely natural given the challenging,
upsetting circumstances to feel heartbroken.

I am glad your surgery is in 2 weeks. Not too long to go now. What is your actual date, so I can think of you?

I also hear you about losing womanhood. Physical Bits being cut out. Bits potentially falling out. It is understandablly deeply upsetting.

So many of these deeply painful moments can be turned into different thoughts, in time. For it is the thoughts that can really bog us down in depression and anxiety, however natural they may be at the time. For they can sit there. Of course. For as long as we need. But not indefinitely.

I believe we are all so much more than our boobs, hair and reproductive functions. We are beautiful. With or without hair. We have so much within us, as women. We are not defined by our diagnosis. It is something that changes us. Absolutely. But we are also awesome.

I see the surgery and treatment as something that has to be done. To get rid of the bits that are sadly no longer functioning as needed. Because of gene roulette and environmental factors.

Going flat is empowering. Like an embrace of my inner child, before my boobs grew. Currently lopsided. Yes. But eventually, in time, i won’t be. When i am i am going to fly a kite at the top of malvern hills after staggering up there, breathlessly, with many stops. The anastrozole makes me incredibly tierd but it is better than the risk of the cancer getting more of a hold. So it needs to be done.

We will get there. You’ve got this lovely neighbour x

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27

Oh sorry to hear that, can I ask that once you’ve had surgery, you wouldn’t need anymore chemo would you? X I hope not! Is your surgery soon? X

Sorry to hear you have endo too. I was on medication for mine, but stopped that since my diagnosis. I’ve even contacted my gynae consultant to understand about hormone blockers with endo, I also have polycystic ovarian syndrome, so thinking I need to speak with an endocrinologist specialist. I find with the breast surgeon, who I’ve only met once, he was very casual about it, didn’t confirm the news to me in the way that I thought he would. He only sees the breast cancer too, doesn’t look at me as a whole person. Having been in and out of hospital with endo surgeries it’s brought back to me how firm you need to be and advocate for yourself. Which I will do, but the anxiety is too much right now x

28

Hi,
I have my appointment tomorrow to discuss treatment plan and I will be asking for double mastectomy. I have been told by the CN that they don’t always do this and I’d need to arrange a psych assessment x can you tell me did you need to go private and any details would help pls

29

I find that the nhs looks at everything in such isolation - my cancer appeared when I started my period & I’ve often wondered about the correlation. I’d had a blood test regarding hormones about 6 months before diagnosis.

I really really hope there’s no more chemo… Never again. I find advocating for myself very hard… I get in such a tizzy at the hospital
X

30

Hey! Your team should organise this for you as they’ll make the referral for the psych assessment. My appt was 30 mins, but they book in for an hour just in case. There will be some hard hitting questions about cancer and how you feel about your own body image/confidence, I did cry as it brings up a lot of emotions. It’s important to know it’s not a test, they just want to have the right support system in place for you.

If your surgeon refuses to do a double, you could always ask for a second opinion from another surgeon, or transfer care to another hospital where you know the surgery gets approved. I transferred care to another hospital the start of my treatment plan and it’s very simple. I would just emphasise the reasons why you are asking for a double and hope that they make the process as smooth as possible for you :crossed_fingers:

31

Hey, your words are very reassuring and comforting. :smiling_face:

Flying a kite on the Malvern hills sounds lovely too! I’ve lived in Worcestershire for 16 years and still haven’t walked up there! :face_with_peeking_eye:

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32

I had a very similar large multi-focal, multi-centric tumour and requested a double mastectomy which I had just over a year ago. I didn’t have enough fat for a DIEP reconstruction which would have got even close to matching my F-cup remainer, and wasn’t keen on implants or wearing a large prosthetic. At the very least it would have meant a radical reduction on the good side to get some symmetry. Also all of this would have meant a number of surgeries over several months, and didn’t want the prolonged surgical journey and risk of hanging around on NHS waiting lists. I had an assessment and did some research and preparation beforehand so that I could make a logical and informed argument. I healed quickly from the surgery and I have no issues with being flat. I wear small prostheses sometimes to give some shape to more fitted clothes but most of the time I don’t bother with them. Just wanted people to know that it is possible.

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33

Thank you so much for sharing your experience and being so open about what you’ve gone through. I can only imagine how challenging that journey has been for you. Your honesty and advice really mean a lot — it’s so helpful to hear from someone who’s been through it firsthand. Wishing you continued healing and strength as you move forward. :two_hearts: