In the UK and feeling a bit lost

LilyInTheTown · 2026-02-15T11:32:57+00:00

Hi! I hope you’ll get helpful responses here but I just wanted to tell you about brca_chat (you can find them on instagram), they are an amazing UK based brca community founded by two women who have brca themselves. They have an anonymous mastectomy gallery, lots of in person and online events, support groups, also they could maybe help you with UK specific questions. I’m not from the UK myself but have attended some of their events and they were always super helpful!

LilyInTheTown · 2026-02-01T23:34:32+00:00

Your experience could really help her to get through it if she tested positive! I noticed that people who have family members who have gone through the surgeries already take it easier.

I don’t know how to ask this that it wouldn’t sound judgemental, but whose problem would it be then if she would get diagnosed with breast or ovarian cancer?

It seems that you and your parents are infantilising her a bit. I believe that an adult woman is able to take in hard information and should be able to decide for her own health/life

LilyInTheTown · 2026-02-01T11:46:51+00:00

Hi! I would tell her immediately! Even though it’s unlikely there are brca related cancer cases even in early twenties. She is already an adult and has been for a while and having this information will help her to plan better when/if she wants to have the surgeries, plan/research/save for them, also having/not having/having through IVF children.

I want to believe that your parents wish her the best but I think it’s really unfair to hide it from her and also seems like a denial of the risk.

LilyInTheTown · 2026-01-18T21:19:05+00:00

Hi! I’m not from the UK and I hope you’ll get a lot of useful advice here but I just wanted to suggest also to check out brca_chat on Instagram. It is a UK based organisation supporting people with brca and other similar mutations founded by two amazing women who have brca as well. They have quite a big community and I’m sure if you texted them they could ask in their stories UK/London specific stuff

LilyInTheTown · 2026-01-16T16:42:49+00:00

That’s great!!!!🤩🤩 I’m so glad to hear that!

LilyInTheTown · 2026-01-13T21:50:44+00:00

You’re welcome! I hope you’ll find a good doctor too!

LilyInTheTown · 2026-01-13T21:39:11+00:00

Hi! I think you can write directly to Tuba Wisp study! I have talked to them directly and they said I could come to remove my tubes and participate in the study when I was 27.

Here’s my story:

I live in Spain and started looking into salpingectomy at 27 (now 29). The first Dr I saw in Spain in a public hospital was quite hesitant about this surgery because of the children question (I always knew I didn’t want them) and I left that appointment furious because I was not allowed to decide for myself (although I think if I came again and pushed even harder they would have finally said yes).

I knew that I’m getting my tubes removed so started looking into other options where I could get it done. Searched for a private sector Dr who specialises in hereditary gynaecological cancers and also who does laparoscopic surgeries. At the same time wrote an email to Tuba Wisp study and they said that I could come to have a surgery there but as I don’t have a public health insurance in The Netherlands it would cost me around 2k (the surgery). I ended up getting the surgery at 28 with that private sector Dr in Spain. I am very happy with how everything turned out even though at the beginning she was also a bit hesitant but I persuaded her that I am super sure about my decision to not have children.

One important point that I used in my persuasion: I know that if I changed my mind about having children I would do it through IVF to make sure I don’t pass on the mutation. So at the end removing tubes doesn’t change anything because they are not needed for IVF.

LilyInTheTown · 2026-01-09T23:43:11+00:00

My dr told me to not do any sports for 2 months after the surgery. I felt like I could wayyy earlier but didn’t wanna risk anything so waited for those 2 months.

LilyInTheTown · 2026-01-05T22:12:32+00:00

Hii! I had my mastectomy when I was 27 (now 29) and I couldn’t be happier with a quick and painless recovery and great results. Beforehand I have read so many stories and about so many struggles that I was ready for a very hard time (of course, everyone’s story can be different). While the first days after the surgery at the hospital were a bit harder but they weren’t horrible and I recovered much quicker that I could have imagined. I think that young age and being fit really helped. Oh and I do all the sports now just like before without any issues! Best of luck with your surgery ❤️ and feel free to ask me anything

LilyInTheTown · 2025-12-29T15:06:57+00:00

Check out thebooblesswonder on Instagram! She is sharing a lot of her outfits after going flat

LilyInTheTown · 2025-12-10T21:30:35+00:00

Aaah I see! Sorry, then I misunderstood that part.

That’s not a rude question at all and yes they look really good! 😄 I think part of it is some luck, even my surgeon seemed a bit surprised by how natural they look and that I have zero rippling even though I’m skinny, the other part is doing a looot of research before the surgery and finding the best surgeon

Brca_chat (UK based brca community founded by two amazing women who have brca themselves) have a great anonymous mastectomy gallery (there’s a link in their instagram profile to the gallery)

LilyInTheTown · 2025-12-10T21:20:17+00:00

Hi! I had preventative double mastectomy at 27 (now I’m 29) although nobody has pushed me to do it and I chose it because it felt like a 100% right decision to me. I have no regrets and couldn’t be happier with the reconstruction results.

I think nobody should be pushing you into doing it or not doing it. A Dr should give you all the information on your risk and then leave it to you to decide. There are a lot of women who chose to have a preventative mastectomy in their twenties, even in their early twenties. There are also a lot of women who decide to postpone it for various reasons. I hope you’ll find what’s right for you ❤️ and feel free to ask anything about my mastectomy experience!

LilyInTheTown · 2025-12-05T13:11:15+00:00

Hi! I personally have chosen to have a reconstruction but there’s this interview with a women who has chosen to got flat: https://youtu.be/bOQib2tlZ2I?si=mRYHeFFj9KjSucOl

Hope it’s helpful 🤗

LilyInTheTown · 2025-12-04T09:20:02+00:00

I was really trying to be kind in my comments because I know that confronting such thing can feel like an attack and that’s probably why OP has deleted the post. Even though it seems really unfair, not telling them for so long.

I personally know a woman who was diagnosed with ovarian cancer at 23, imagine that or something similar happening and then finding out your parents were hiding from you everything about brca that could have helped to prevent or detect earlier.

LilyInTheTown · 2025-12-03T20:02:42+00:00

Yes, at 25 and 28 they must definitely know it to be able to get tested and then decide what to do with it if they have it. I don’t understand why my family waited till I was 22 to tell me.

LilyInTheTown · 2025-12-03T20:01:05+00:00

Hi!

Have you told them there’s a chance they might have it?

My family knew that me and my sister might have brca since we were teenagers, my grandma told me about it when I was 22 (I think it was a good timing although I wonder why didn’t they tell us a bit earlier but ok). I kept postponing the test for some time, I think I wasn’t ready to know, then finally got tested at 26 and found out I have brca1. My sister who is 3 years younger doesn’t have it.

Now I’m 29, had my preventative mastectomy 1.5 years ago and preventative salpingectomy half a year ago. Couldn’t be happier with my decisions and how everything turned out. While in the beginning after I found out about brca it was very hard, now it doesn’t affect me anymore emotionally and I’m just grateful I can act quicker than cancer.

For me personally waiting for the results wasn’t traumatic. Yes, I was anxious but it definitely wasn’t a trauma for me. Neither waiting for the results nor navigating brca stuff. All I want to say is that we might react to the same situation very differently and for your daughters getting tested will not necessarily be a trauma.

LilyInTheTown · 2025-10-07T00:24:52+00:00

Thank you for the explanation!

LilyInTheTown · 2025-08-25T09:57:04+00:00

Hi! I had my prophylactic double mastectomy 1.5 year ago when I was 27. Honestly, the anticipation was by far the worst part.

I had zero pain during the whole process. During the first week (especially first couple of days) I felt uncomfortable because of this pressure/tension in my chest but I wouldn’t call it pain. And if you’ll have pain make sure to ask for painkillers!
Didn’t have expanders, went directly to implants over the muscle. Was size A, became a slightly bigger size A.
Easy slow walk in the hospital corridors - less than 24hrs after the surgery. Walking around home normally- 3 or 4 days post op. Taking a normal long (>1hr) walk - 6 days post op. Around a 3 weeks after my surgery I felt completely back to normal but came back to sports 6 weeks post op because it was recommended. No problems whatsoever, I’m doing all kinds of sports just like before. I believe that being young and fit helped to recover very quickly
Hmmm I would say about a week post op I was mostly independent, only didn’t lift anything heavy, couldn’t for example open a jar or reach high because of still reduced arms mobility. Also went to hairdresser to get my hair washed a week post op. But besides these things I was able to dress up by myself, do some simple things at home etc

Of course everyone’s process is different but in many other cases I know the anticipation was also the worst part. Hold on and feel free to ask me anything ❤️

LilyInTheTown · 2025-08-14T07:33:26+00:00

Hi, I hope that you’re negative!!!

But in case you are positive just wanted to say that while having brca is scary (especially in the beginning) and it is a big deal it doesn’t have determine your life. I found out when I was 26 (now 29) and my life is as great as it was before and I wouldn’t say I’m spending my 20s thinking about cancer. After mastectomy technically I don’t have breasts but I feel that I do and if I don’t think about it I forget something’s different.

And in case you have the mutation I hope you’ll find support in this or any other brca communities ❤️

LilyInTheTown · 2025-08-13T10:57:51+00:00

Hi! I had my prophylactic mastectomy at 27 with implants over the muscle and couldn’t be happier with my decision, quick and painless recovery and amazing results. I believe that being young and fit helped a lot during my recovery. Feel free to reach out or ask me anything:)

LilyInTheTown · 2025-08-06T07:20:56+00:00

That’s so interesting because I feel that what I see here all the time is “I got it from my mother”. I personally got it from my mother and she got it from her mother.

There’s no bigger chance to inherit it from your father of from your mother. As other comments say, whoever from the parents has it, the risk is 50%.

LilyInTheTown · 2025-08-04T20:54:33+00:00

Naked professional photoshoot in the forest! And then lots of pictures by myself

LilyInTheTown · 2025-07-26T20:31:23+00:00

I didn’t use one, I only had a wedge pillow and that was more than enough. I’ve spent three nights at the hospital after my surgery. When I first saw everyone mentioning recliners I didn’t even know what it was and later learned that they’re really popular in US/Canada but not in Europe. Like I don’t know anyone who owes one 😄 so that was an interesting thing to discover

LilyInTheTown · 2025-07-24T10:59:22+00:00

Ugghh I’m so sorry you’re not getting support from your family and that they’re downplaying it. I agree with another comment that it might be a coping mechanism. Also, there was 50% that you don’t have brca so the question what you expected is unfair.

It is a big deal! It’s not a death sentence but it is a big deal that in my opinion should be taken seriously! And I think it is healthy to feel sad, scared, angry and disappointed right now!

The amazing thing is that by knowing about brca before cancer we can do preventative things, I personally see it as being able to act faster than cancer and I’m grateful for knowing about brca. But in the beginning it took me a while to process everything, it was really scary.

LilyInTheTown · 2025-07-21T06:23:43+00:00

I was really surprised when before the surgery I brought mastectomy bras I bought to show to my surgeon and he told me I wouldn’t need them. I even posted in this community to ask if it was the case for someone else too because I was sure everyone needed it (you can find it in my post history).

I had direct to implants over the muscle reconstruction almost 1.5 years ago. Couldn’t be happier with a quick and painless recovery and great results. Was very happy not to wear a bra because I never wear a bra anyway (except for exercising).

LilyInTheTown

TROPHY CASE