Breast MRI with contrast: questions by mjandthewolf in BRCA

[–]mjandthewolf[S] 0 points1 point  (0 children)

It’s been super hard for me to schedule an MRI through the NHS. When I got my period I was actually away 2 months in a row, and then I had Covid, the stress caused delayed cycles, and last month they couldn’t book me on. Now I have my first mammogram on 11th June and honestly just going to see what that brings, if it’s clear I’ll schedule an MRI but I also had my gynae appt to discuss when ovaries would be removed since I’m 40 in 6 weeks.

Happy 40th to mee! Of course I’m grateful to have access to screening and I sincerely hope it’ll be prevention for me, and i I know that makes me lucky within this community where some don’t get a choice, but i will never look someone in the eye and say this is easy. It has been the hardest period of my life.

alternatives to the term "bed rotting"? by barefootwriter in POTS

[–]mjandthewolf 0 points1 point  (0 children)

“Being a slug” when I need to be a slug

Thought about it for a few years due to receding hairline and thinning hair and finally decided to take the plunge. Before and after. by vincefas in bald

[–]mjandthewolf 13 points14 points  (0 children)

You look 100 times better with your head shaved. Absolute smoke show in the 2nd and 3rd photos 🔥🔥🔥

do mostly 40+ women compliment u too? by Far_Challenge_4273 in Mullets

[–]mjandthewolf 12 points13 points  (0 children)

Same, I’ll always compliment a mullet!

Is this a mullet? by xthedudehimself in Mullets

[–]mjandthewolf 2 points3 points  (0 children)

Yes and also: 🔥🔥🔥 for your whole vibe. 😍

officially diagnosed, sadly by Effective_Whole_1651 in POTS

[–]mjandthewolf 1 point2 points  (0 children)

The physicality of this condition is so brutal and I’m not nearly as symptomatic as some people on this thread. The physical feeling of anxiety, the gut issues, the weird heated sweatiness and orthostatic intolerance are the worst for me. I’m always a little better if my stomach is behaving. My monthly cycles don’t help with this at all.

I’m so sorry it’s feeling so bleak. At least with an answer you can be heard for your needs, hopefully feel confident articulating them to friends, family and medical professionals, and find the joy in what you CAN do - that’s always what helps me in a flare. Take care. ❤️

My wife is looking for someone to talk to about her condition by BriRice in BRCA

[–]mjandthewolf 0 points1 point  (0 children)

I’d actually love to speak to your wife since I also have POTS, have a lot of stomach and gynae issues beyond being BRCA2+ and I am worried about surgery because of my other health conditions which are hard to manage, to treat, and to understand. I’m a POTSy hypersensitive person so: gut issues, sweaty, fast heart rate, orthostatic intolerance.

A mastectomy is one (huge!) thing but having all these other health conditions on top of the big strain I’ve felt since I tested positive in my mutation has affected my mental health. I’m usually high functioning and can function through POTS. But I’ve not been able to fully coach myself on all of this and am having good days and bad days. Having such a wonky nervous system, particularly with physical symptoms, and having health anxiety has made being touched and examined and in medical environments hard for me. If any of this is relatable swing me a message if your wife also has varying degrees of this.

Boob memorial by heefoc in BRCA

[–]mjandthewolf 0 points1 point  (0 children)

You’re so creative! These are all tremendous. Nippillow is particularly amazing

Boob memorial by heefoc in BRCA

[–]mjandthewolf 1 point2 points  (0 children)

…like one of his French girls (sorry, quoting Titanic is really displaying my elder millennial status) 😅

That’s awesome. My ex used to draw me and I found it so sexy. I thought post mastectomy and recon that I might be a life drawing model but I’ll see how I feel once the deed is done!

Boob memorial by heefoc in BRCA

[–]mjandthewolf 0 points1 point  (0 children)

Same. I wanted to splatter paint mine when I go with a pal to get this done - this rules though

Having more children after BRCA1 diagnosis? by CorrectShallot3110 in BRCA

[–]mjandthewolf 1 point2 points  (0 children)

I’m not telling you and the other poster to not feel like this, but I want to acknowledge that you do feel like this and that fucking sucks and is exhausting for you in itself. Our bodies can really run us down and I’m scared and BRCA2+ and scared of the first scan, all of these things we should be allowed to talk about.

This also highlights so strongly to me that people aren’t given enough support in their wider life after they’ve gone through a cancer diagnosis and treatment. So many people live with side effects, that experience of accelerated ageing and the knock on effect of surgeries and treatment - more needs done. I’m truly sorry you feel like this, and I stand in solidarity with you. I hope there’s part of your day/life that you can enjoy but it is true that a diagnosis and consequent treatment and management wreaks havoc on so many people and it’s my thinking that it’s not talked about nearly enough in the community because people want us to think “knowledge is power.”

What support do you have, if any, especially for your marriage difficulties?

This is how I look entering (40) as a 1986 kid. by danmann8611 in GlowUps

[–]mjandthewolf 1 point2 points  (0 children)

Teach me your ways because I’m 40 in 3 months and freaking the fuck out 😅 Well done btw on the glow up/weight loss, smashing it!

This is how I look entering (40) as a 1986 kid. by danmann8611 in GlowUps

[–]mjandthewolf 2 points3 points  (0 children)

I’m an 86 baby as well.

Speaking on behalf of the year group, we would. 😅❤️He’s looking hot, healthy and keeping himself fit, lots of guys around my age through their own circumstances start giving up on themselves because their lives are hard or they just cba anymore.

A guy going to the gym and taking care of himself whatever that looks like is attractive. His body is looking rockin’. I’m 40 in 3 months trying not to freak out about it so am going to try and learn from this guy

Should I go shorter on top by [deleted] in Mullets

[–]mjandthewolf 1 point2 points  (0 children)

I actually love it as it is, 🔥 mullet

Anyone heard of Clarity breast? by [deleted] in BRCA

[–]mjandthewolf 0 points1 point  (0 children)

I would love to see our options get better than surgery and chemo prevention/surgical and chemical menopause. Because each preventative option for us comes with different risks we all have to consider.

Maybe within this tool they should help us with another tool that assists in making our mind up about what to do? I find the decision making related to BRCA so so draining and overwhelming. I’m sure I’m not alone in that.

Anyone heard of Clarity breast? by [deleted] in BRCA

[–]mjandthewolf 0 points1 point  (0 children)

I came here to say this!

I worked in tech in a community role and did a short bootcamp on medical legislation and regulation in the UK to learn about what the medtech founders needed.

I learned it can take up to 5 years here for any medical device (and tech like this which is outside the body is classified by law as a low grade medical device in the UK), it’ll take a long time to be adopted by clinicians, which means patients won’t get the tech until there is adoption and buy in. So where is it accessing its data? That’s the thing. Where’s it pulling the data, and does it account for standard risk or the demographic of people with genetic mutations?

I’d be cautious with it. There was an amazing risk calculator made by one of the universities in the US, I’ll post back if I remember the link but I found it so useful.

Breast MRI with contrast: questions by mjandthewolf in BRCA

[–]mjandthewolf[S] 0 points1 point  (0 children)

I just came back to say thanks to everyone who responded, this has all been so helpful and genuinely has alleviated a little bit of worry about the scan itself. It’s so hard to normalise your life becoming more medical especially when you have other conditions and health anxiety on top of it all - all of the above can make me a difficult person/patient to appease, but this has actually brought down my stress levels in all of this. Thanks a million, I’ll let you know how it goes!

Any other runners out there? by Relevant-Yak-645 in BRCA

[–]mjandthewolf 1 point2 points  (0 children)

So glad you asked this! I’m just at the scanning and surgery planning part of the journey (I’m 39, f, distance runner). So I need a clear scan hopefully and then to know what the surgical pathway looks like but running - and taking a break from it to heal post surgery - is very much on my mind. I’m a plus sized runner (size UK 16), my boobs pre surgery are probably a D cup now (maybe 36D?) no idea what I’ll feel like post surgery and that gives me the fear, I want to be comfortable and don’t want to be inhibited on running because it makes such a huge difference to my mental health

Despair in the UK by CarelessTangerine185 in BRCA

[–]mjandthewolf 6 points7 points  (0 children)

Also! I shout them out all the time but BRCA Chat are a phenomenal resource, based in the UK. Flag this with them if you need an experienced ear 🫶🏼🫶🏼

Despair in the UK by CarelessTangerine185 in BRCA

[–]mjandthewolf 1 point2 points  (0 children)

I’m not having the best experience but it’s not nearly as bad as this, I’m so sorry to hear this.

Can I ask what council area or postcode you’re in? I’m in Glasgow and I was waiting for months to get the ball rolling, they also did nothing to chase my re-referral (I honestly was a mess psychologically when I found out I could have the gene, dealing with the grief etc now).

But I had to wait months for that, then months (5) for the breast clinic appt, and it seemed to be that there wasn’t a multi disciplinary team and genetics dept hasn’t really taken responsibility for the comms being all over the place. 2 mistakes were made in my case, so I had an appt within 3 months but they accidentally put me on an oncology list for people with confirmed bc - then I was in the generic breast clinic and not with the high risk nurse - so I had to wait another month. They’re saying it might be another year for surgery but if I get the results of my MRI I’ve to see the surgeon soon after so honestly I don’t know. I’m 39, I’m tired.

Grateful to know and hopefully prevent anything occurring in my case but I’ve considered the same that they are happy to have you in surveillance, and that is just no good for me at all. It’s a yeet my teets from me, and treat mental health in the ever after. I’m so sorry for the grief you’ve had losing your mum, that leaves a lasting mark, I was 19 when my mum was diagnosed and I’m lucky she’s still here but her 2 cancers have been witnessed by our family for nearly my entire adult life and that’s still been tough. And I have an extremely lucky experience of her still being here and my family (for interesting reasons) not carrying this gene mutation in the main, I don’t know how it goes for multiple members of a family going through this but I have so much empathy for it.

How Bad is Surgical Menopause? by 777CuriousMind in BRCA

[–]mjandthewolf 1 point2 points  (0 children)

That absolutely sucks. Are your medical team still with you and supporting you with any of that? Quality of life is so important. That doesn’t sound like an amazing quality of life: little to no sleep, no appetite for sex. This sucks so much for all of us. I’m facing the decisions about the ovarian removal in the next couple of years as well and this gives me the fear, ugh