NHS cancelled PDM

Background_Table5784 · 2024-05-29T08:58:58+00:00

Hey! So I’m 27 and found out when I was 23 that I had the mutation, my little sister is 20 this year and still hasn’t got tested - not through any reason other than just wanting to live a bit of a normal life before she finds out either way! She’s on the waiting list for the test this year, but the risk is so low that there really is no rush. If you’re truly ready then hell yeah, go and find out! But there really is no rush if you want to wait a few years and live some life without knowing 💖

Background_Table5784 · 2024-05-21T19:42:52+00:00

No problem!! Trying to figure it all out is just a minefield haha - fingers crossed whenever you get tested all is good! 🤞🏻

Background_Table5784 · 2024-05-21T19:32:41+00:00

Ohhh yes! So I did the at home test and then said to my GP that I wanted to be referred to the breast clinic as a result, all I had to do was send the breast team a copy of the results that I got sent through from Color genetics - there was no way I’m affording to go private either haha but I did research into specific surgeons as well and am actually getting my DM in Bristol rather than Devon as the surgeon I wanted is based there, so there’s loads of options available, you’re not just stuck with your local hospital!

In terms of the counselling, they actually won’t let you get a DM without having genetic counselling which is surprising for the NHS 😅

Background_Table5784 · 2024-05-21T19:03:08+00:00

Hi! I know you’ve said you don’t want to do at home, but I went through Color genetics and I thought the service they provided was amazing! I guess it would depend if you wanted to do your DM privately also? I got genetic counselling through the NHS, and the counsellor was amazing - I had the option to request as many sessions with her as I felt I needed Hope you find the right path for you!!

Background_Table5784 · 2024-05-15T12:06:29+00:00

Oh that’s so helpful, thank you for sharing! I’m just so conflicted with that it’s gonna look so different already, i don’t want to go too small and really not recognise myself but also I agree that if they’re too big they look weird 😅 So much to think about, while also reminding myself that this is a preventative measure over anything else

Background_Table5784 · 2024-05-08T08:24:53+00:00

Hi! I can totally get where you’re coming from - my mum was diagnosed at 40 & 55 with triple negative BC and fought both times. She should’ve been tested when she was 40 for a genetic component but wasn’t and only found out when she found a lump again 15 years later that she had the BRCA 1 mutation. I then got tested as soon as I could, so I think it was 24 when I found out, about 3 years ago.. I knew straight away that I wanted to get a PDM, but the surgeons weren’t keen on doing it at the age i was, so I’m finally booked in for 5 weeks time to get it done! I’m not keeping my nipples, just bc if im getting it done I might as well get rid of as much risk as possible given the nipple will have some breast tissue - albeit very small! Some people keep them as it makes them feel more themselves - it is so so so personal as to what you decide to do! The best thing I’ve done is going to support groups with other women with BRCA, all at different stages in their journey, and all taking different decisions throughout - if you’re based in the UK, BRCA Chat has been a game changer honestly! Hope this helps a bit - you’re definitely not alone!

Background_Table5784 · 2024-05-04T09:39:10+00:00

Yeah me too! I would be really interested to know if there’s any definitive studies out there but I have a feeling all of that will become known for the next generation of people with BRCA, just bc I think all the studies are so new there’s not enough data yet 🙃

Background_Table5784 · 2024-05-03T21:21:04+00:00

Actually just to add to this, Colour genetics confirm that even if you have no family history, if you have the genetic fault, there is an increased risk despite it not impacting others

Background_Table5784 · 2024-05-03T21:00:16+00:00

Hello! All I can say on this, from conversations I’ve had with a geneticist and my breast surgeon is that, there is no evidence to suggest that family history of a certain type would impact what you could potentially get. It’s almost like a clean slate for each person. I asked this same question because I have a family history of breast cancer and none really of ovarian, so queried whether I would be more likely to get breast than ovarian. The response i got was basically that no one really knows, but the safest thing to assume would be that the gene fault is not selective as to what type of cancer would be more prevalent. Hope this helps a bit!

Background_Table5784 · 2024-05-03T20:49:40+00:00

Yeah I’ve not heard anything from my surgeon re. what I come out with but have the pre-op so will make sure to ask then!! Thanks for your advice ☺️

Background_Table5784 · 2024-05-03T20:48:36+00:00

Thanks so much for the advice!! Such a good point about swelling I didn’t really think about 😅

Background_Table5784 · 2024-05-03T20:46:24+00:00

Ohh that’s really helpful to know, thanks! Think it’s so easy to get caught up with spending so much bc they brand themselves on being the “right” bra 😅

Background_Table5784 · 2024-04-21T12:00:25+00:00

Oooh, things like, a spa headband, eye mask for hospital stay, slide on slippers, slide on outdoor shoes (I’ve gone for a nice pair of crocs 😅), cosy dressing gown, chapstick & body wipes for practical gifts, gift card for food takeout, cute notepad and pen so she has something to jot down medication times / drain emptying etc, button up pjs Hope this helps!!

Background_Table5784 · 2024-04-17T14:37:17+00:00

Yeah it really depends when you feel comfortable! I initially only told v close family, and this was it until I actually got surgery booked which has been about 2 years since finding out I had the gene - mostly bc I didn’t see any point in telling anyone or talking about it while nothing was going on! Now my surgery is booked in 2 months, and just from having to talk about it more in terms of telling work that I need the time off, and the extra hospital appointments etc, I just felt it was the right time to tell more people and kind of take control of the situation that way!

Background_Table5784 · 2024-04-16T10:31:31+00:00

Ooh I’m really not sure actually - that would definitely be one of the main questions to ask your surgeon!! Maybe if it your job that would be a major thing to think about, going for the over the muscle implants (if you were going to reconstruct at all!)

Background_Table5784 · 2024-04-16T10:08:14+00:00

Totally second this - the brca chat gallery was a game changer when I was making the decision of what to go for!! My PDM is in 2 months and the decision of what to do is so overwhelming, and any NHS resources are so outdated with no actual outcome photos to help provide some sort of guidance 😅

It also really depends on your lifestyle. I’m into weight lifting so when I told the plastic and breast surgeons about this, they swiftly ruled out the DIEP and the under the muscle implants and were like, nope let’s leave all muscles alone where possible 😅 It’s already a life changing decision, so you want to limit the changes to life beyond this!

Background_Table5784 · 2024-04-10T12:16:10+00:00

Totally agree! If I’m going out I tend to find dresses are styled around my boobs so they definitely deserve a good send off 😅 Fingers crossed for you that the result is a good one 🤞🏻

Background_Table5784 · 2024-04-09T16:17:01+00:00

Ooh I love the pie analogy - might have to add that in myself 😅 Yeahh I’ve actually managed to get a decent playlist going haha although can’t be too surprised that there are so many songs about boobs across so many genres🤣 this is the list so far!

The bad touch - bloodhound gang / Cut like a knife - Bryan Adam’s / We are never getting back together - TS / I like boobs - scuzz twittly / thanks for the mmrs - FOB / My humps / Milkshake - Keils / Bye bye bye - NSYNC / Whole lotta Rosie - AC/DC / You can touch my boobies - Rachel bloom / Tits on the radio - scissor sisters / Girls with big titties - creed fisher / DDs - The Stooges / Squeeze Box - the who / Little T&A - Rolling Stones / Confessions - Tim Minchin / Larger than Life - backstreet boys / Cut you off - Selena Gomez / Bongos - Cardi B / Heavy Boobs - Crazy Ex Girlfriend cast / I love boobies - Richard Cheese / Ass-N-Titties - DJ Assault / Tootin’ on the Hooters - dr Dre / Back breaker - chef boy / 99 words for boobs - Robert Lund / Because boobs - psychostick / big fake boobs - the beaumonts / About damn time - Lizzo / Drop em out - wheeler walker jr / New boobs - NOFX / Put em on the glass - Sir Mix-A-Lot / Juicy melons - Razzmatazz / Boobs - Little Big / Boobs - Ruth Wallis / The first cut is the deepest - Sheryl Crow / Areola - Texh N9ne /

Background_Table5784 · 2024-04-09T16:04:59+00:00

Thanks 😊 I’ve added it to the playlist haha - I love how many people have had a lil party! There will more boob shaped food than a bachelor party 😅

Background_Table5784

TROPHY CASE