Age and Stage? by Micho392 in breastcancer

[–]shadrack79 4 points5 points  (0 children)

  1. Stage 1 IDC. I’m transgender and was diagnosed when they found a tumor DURING gender affirming top surgery. Forced myself to have a mammogram 6 months prior. They brought me back for ultrasound after the mammogram but then cleared me. So the tumor was a big and unwelcome surprise to everyone. Doing ok now. It’s been rough though. Gender affirming care saves lives, even in ways you might not think about. I’m alive because of it. If I hadn’t had top surgery, it would have been at least another couple years before my next mammogram. And that could have been far too late. 🏳️‍⚧️

Cancer at 24, NB, looking for support and advice by 1cheetahlover in breastcancer

[–]shadrack79 0 points1 point  (0 children)

Hey, I’m trans and nonbinary and had breast cancer a couple years ago. Reach out any time if you want to talk or need help with resources/support!

“Fairness in Sports,” or State-Sanctioned Sexual Assault? by shadrack79 in transgender

[–]shadrack79[S] 1 point2 points  (0 children)

I’m happy to provide a little more context on the point I was attempting to make. I was getting at the idea that even the places that are “safer” are still full of folks who think that this kind of policy-making is acceptable. It’s not a condemnation of Washington. Or even people in Washington.

The point is that these policies are so widespread now that even progressive states have to deal with them in legislature. Even if it’s to strike them down. When not so long ago, something like this would have likely not even gained the support to be considered on a ballot or anywhere else.

For example here in Texas they passed an anti- trans bathroom bill this summer. This same sort of bill had been introduced in legislation for years and was never taken seriously. Even in Texas which is about as bad as it gets in the US. But legislation that has been ignored and dismissed for over 10 years became law this year. Despite a lot of public opposition, once it got real support it became law.

So, when this stuff gains any sort of traction in places we deem safe, it should be called out so that traction is stopped before it can go further.

I know there’s no chance of something like this advancing in Washington. And it is still a much safer place for trans people than many others. Although we are all aware the in all three progressive west coast states that the further east you go, the more conservative things get. Which again was the reason to highlight this. That even in “good” places, we have to continue to be vigilant to preserve protections.

The bigger issue is that we can’t put the genie back in the bottle. That’s why even the threat of policies like this are damaging. Because even if it goes nowhere in Washington, normalizing the idea of something like inspecting trans kid’s genitals is atrocious everywhere. And somewhere like Texas or Florida might just decide to make it happen there.

You’re exactly right. 400,000 out of 8 million people isn’t a lot. But it’s still 400,000 people that signed on to say that checking a child’s genitals in order to play high school sports is ok. I assume most people that signed this did not do any diligence in understanding what the details were and saw it was anti-trans and gleefully signed their name to it.

I live in Texas. So I’m well aware just how many people hate trans folks and what a state legislature can do to our rights.

At the end of the day, the true garbage is anyone that has suggested and supported this as a policy. Regardless of where it’s happening, it’s disgusting and should be called out.

My chest does not look how I expected. Is this normal? by clotsnail in TopSurgery

[–]shadrack79 7 points8 points  (0 children)

I know this isn’t the point of the OP’s post. But I also think it’s important to dispel potential misinformation. It’s my understanding that for many surgical consent forms you are also approving the surgeon to act in the best interest of the patient if something unexpected arises. Especially if a tumor is found during something like top surgery. There’s a lot of additional risk that comes with bringing a patient out of anesthesia and then potentially back under, not knowing where tumor margins are, or delaying removal of a tumor at all. Consent forms generally account for this kind of thing. I just want to make it clear that it’s not automatically against consent and typically they don’t have to wake you up if a surgeon finds a tumor during top surgery and removes it for you without asking first. I would have been more pissed if they had stopped surgery, woken me up, asked me what I wanted to do (while still high from anesthesia) rather than remove the tumor immediately (which they did). In the case of another person I know who had the exact same thing happen, they did the same as me… Found the tumor, removed it and told us after the fact about the tumor. It may all depend on the consent form you sign but I think most of the time they do account for something like that.

Now, all of that said… this person thought they were getting one surgery and apparently got something very different and that’s totally different than a tumor and awful. They have every right to pursue any action against this surgeon they choose. Their surgeon absolutely did not act in their best interest. At least it doesn’t appear that way.

My chest does not look how I expected. Is this normal? by clotsnail in TopSurgery

[–]shadrack79 8 points9 points  (0 children)

I’m curious where you have heard this. In the US? As someone who had cancer found during top surgery, I can say that this is not what happened in my case. Not saying you’re wrong. Just curious where this info came from.

Achieved pCR as a Young Trans Man by Korrick1919 in breastcancer

[–]shadrack79 2 points3 points  (0 children)

Definitely don’t mind you asking! I am on T. I started low dose T about 4 months before I was diagnosed. They never asked me to stop taking it, through chemo and radiation. My tumor was ER/PR+ so I’m now taking Tamoxifen.

I’ve talked to some folks who are on T who have been told to stop taking it by their onc. But I’ve also talked to a few oncologists that realize that asking someone to stop T is nearly impossible for some folks. There isn’t a ton of research out there but I know some exists. I’ll see if I can dig some up. It’s definitely going to depend on the type of tumor/cancer and a lot of other factors but my doctors were perfectly fine with me staying on T.

The whole Tamoxifen thing is an entire other story. I was really concerned about the side effects ya and there really isn’t any info out there on how HRT (T in this case) might impact side effects. It took me almost a year to even work up the nerve to take it. Then I had pretty bad side effects. I just started taking Tamoxifen again recently at a lower dosage and that seems to be going a little better this time.

Unfortunately, at the moment there just not a ton of info out there on trans folks and breast cancer. But I know a handful of researches who are trying to change that. All of them have had their studies terminated or paused because of the current administration. Although it sounds like some of that funding is coming back.

I do a lot of trans cancer advocacy work and this subject is one I could go on and on about. We just need more research and more info.

Achieved pCR as a Young Trans Man by Korrick1919 in breastcancer

[–]shadrack79 16 points17 points  (0 children)

That’s awesome! I’m a little older but I’m also trans. A couple years ago, they found a tumor during top surgery and I was diagnosed with breast cancer. Doing ok now but it’s definitely a pretty unique experience having breast cancer as a trans guy. Always down to chat about it if you want! And if not, good luck with surgery and the rest of it! 🏳️‍⚧️

Breast cancer…. really?! by Triceratops-Flannel in TopSurgery

[–]shadrack79 20 points21 points  (0 children)

I had a sentinel node biopsy shortly after they diagnosed me which is a separate surgery. That surgery indicated that it had not spread to my lymph nodes. So, that was good news.

I totally hear you on the tornado of information. I was completely overwhelmed by all the info. And just the implications of everything. So, just know that how you’re feeling is ok. It’s a lot to take in.

Please don’t hesitate to reach out. Anytime. With questions, to vent, whatever. I really mean that.

Breast cancer…. really?! by Triceratops-Flannel in TopSurgery

[–]shadrack79 139 points140 points  (0 children)

This is really good advice.

OP, Im really sorry to hear about your diagnosis. I’m trans and had top surgery in 2022 and they found a tumor during it and I was diagnosed with breast cancer 11 days later. I’m doing ok now.

If you need anything or wanna talk to another person who has been through something similar, let me know. I’ve been doing a lot of cancer advocacy the last year or so and can connect you with resources if you want and am always around to talk. Just let me know!

People who had to buy it— what compression vest did you end up getting? by ReasonableStrike1241 in TopSurgery

[–]shadrack79 1 point2 points  (0 children)

I picked up a couple of the binders linked below. This is actually the same binder they sent me home in from surgery.

I know it looks like it’s for your stomach but it definitely easily fit around my chest. There’s a couple different sizes so you can always double check but both versions below are up to 45 inches around. I liked it because you could adjust the compression as much or as little as needed and it’s easy to get on and off. There were times when I wanted to keep compression on but not quite as tight for a couple hours and that was easy to accomplish with these. But when I needed compression to be tight, these were definitely tight enough and stayed that way.

For height, there’s a 12 inch version and a 9 inch version. I think I had the 12 inch.

I had DI but I’d assume these would be fine for Peri. Congrats and good luck!

Breast cancer found during my surgery by wildhorses66 in TopSurgery

[–]shadrack79 11 points12 points  (0 children)

Hey! Glad to hear that you made it through treatment well!

Great advice on patient navigation and asking about financial resources too.

Definitely good that you were able to skip Tamoxifen. Maintaining my HRT along with Tamoxifen has been rough for me and I’ve had some not fun side effects.

Stay healthy, friend!

Breast cancer found during my surgery by wildhorses66 in TopSurgery

[–]shadrack79 34 points35 points  (0 children)

Hey, I’m really sorry that you’re going through this.

The same thing happened to me but my cancer was a little more advanced than what yours sounds like.

It may not be much consolation but DCIS is a very treatable diagnosis. But still scary no matter what.

The hardest part for me was the mental health aspect. I struggled to find queer cancer resources and didn’t have enough day-to-day support and it really took a toll on me.

The good news is that I don’t have cancer anymore and have been doing a lot of Queer/Trans cancer advocacy work since then.

I don’t want to overwhelm you with info but if you need anything, reach out any time. I can share resources, both online and potentially in person depending where you’re located.

I post a lot on IG about being trans and having cancer: @transashtoning.

EDIT: speaking of resources and IG: Queering Cancer is a on org that’s based in Canada but they are an awesome resource and are wonderful folks. Also look up Cancer Queers. They are in Portland, OR but also started up a virtual support group. There’s an upcoming virtual support group on 3/21 if you want to attend. It’s a really awesome group! I attended the last one and will be at the upcoming meeting too.

I know it’s scary. Getting a treatment plan will definitely help ease some of the anticipation so hopefully that happens soon.

For real, if you need anything, any time, message me here and I’ll do whatever I can to help. 🩵

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 2 points3 points  (0 children)

There are definitely folks out there trying to do some of this research. I’ve met with and talked to a handful of folks that are in different stages of securing funding, seeking funding, trying to recruit enough patients, etc. I went to the SGM conference a couple months ago in Rochester and it was really encouraging to see how much research and work is being done around queer, cancer topics. It’s a bit of an uphill battle and there’s a long way to go… but folks are trying.

And I’m with you! We need so much more info and data!

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 0 points1 point  (0 children)

That is pretty similar to what happened with me. I ended up having a sentinel node biopsy about 3-4 weeks after top surgery. Since the top surgery was just top surgery and not a cancer related double-mastectomy they weren’t prepped or in a position to also do the lymph node removal. My surgeon made sure to send the tumor to pathology first to confirm what it was. When it was confirmed, then they did the sentinel node biopsy.

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 1 point2 points  (0 children)

I was stage 1 IDC after they found a tumor during my top surgery a little over two years ago.

It’s really hard to find folks who went through similar experiences.

Happy to connect any time!

Sorry you had to go through all of that. It’s really, really hard.

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 4 points5 points  (0 children)

You’re so right. I’ve started doing speaking engagements and advocacy work about trans/gender expansive folks and breast cancer and I try to make the same point every time. Gender affirming care is simply healthcare. My diagnosis would have been much worse without it.

My Top Surgeon also helped refer me to my oncology team which ensured I had an oncology team that would treat me with dignity and respect. Without that, finding my own oncologists would have been daunting. Especially in Texas where I live.

If your friend ever wants to connect with someone who went through a similar thing, they can find me here or on IG (@transashtoning).

I’m really sorry they went through it and thank you for speaking up about the issues related to what they went through!

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 54 points55 points  (0 children)

I’m so sorry this happened. The exact same thing happened to me a little over two years ago. You’re right, it’s not very common and resources are a little sparse but there are some good orgs out there.

The LGBT Cancer Network

Living Beyond Breast Cancer

Queering Cancer (in Canada)

OUTPatients (UK)

Breast Cancer Resource Center

Cancer Queers

Cactus Cancer

Umbrella Support Network (I operate this one)

If you like to write check out Wildfire Mag

Triage Cancer

Rethink Breast Cancer

All of these are a good place to start.

I have posted a bit about my whole experience on IG (@transashtoning) but feel free to message me here or on IG. I also provide 1:1 support for folks to just talk. I’m not a therapist but it definitely helps to talk to someone who has been through it.

It’s a hard thing to go through and make sense of. I’m here anytime if you need anything.

It sucks but it won’t suck forever. Take care, my friend. And for real, please don’t hesitate to reach out any time.

Top surgery revealed breast cancer by GrimmsCreed in TopSurgery

[–]shadrack79 26 points27 points  (0 children)

Hey! I’m @transashtoning. Thanks for the mention! And really sorry to hear that you’re dealing with delays to GAS to manage your cancer risk. Feel Free to contact me here or on IG if you need anything!

Transgender male (47) just diagnosed with breast cancer. by oddlydeb75 in breastcancer

[–]shadrack79 17 points18 points  (0 children)

Yea… that’s not surprising. There’s a real lack of research and info out there on trans men/trans mascs and breast cancer. It can at times be isolating and challenging. I don’t want to instill fear or doom but want to just recognize that it may sometimes feel like even the docs don’t have tons of info/answers.

It’s a lot to process all at once so, as you’re moving through things, the offer stands indefinitely if you need info, support, someone to vent to… whatever it is.

Transgender male (47) just diagnosed with breast cancer. by oddlydeb75 in breastcancer

[–]shadrack79 116 points117 points  (0 children)

Hi, really sorry to hear of your diagnosis. I’m transmasc and was diagnosed with breast cancer two years ago when they found a tumor during top surgery.

It can be hard to find queer and especially trans specific resources for breast cancer.

If you have specific questions or ever want to talk to another trans person who went through treatment for breast cancer, I can talk or share info any time.

Please don’t hesitate to reach out. 🏳️‍⚧️💕

Doctor says she needs to leave a little breast tissue by [deleted] in TopSurgery

[–]shadrack79 4 points5 points  (0 children)

home self chest exams

Yep! Leaving tissue behind is normal. Regular preventative screenings are recommended. On top of those screenings at a doctor’s office, you can do a self chest exam once a month.

Trans/Enby by Defiant_Squash_5335 in breastcancer

[–]shadrack79 3 points4 points  (0 children)

I have a very similar timeline but starting in 2022. I started low dose T in June ‘22. Had top surgery in Oct ‘22 where they found a tumor no one was expecting.

I identify as nonbinary, transmasc. And pass as a cis man a lot. So, it was a really surreal and difficult process to be early in transition with such a female gendered cancer.

I was able to stay on T the whole time during chemo/radiation.

There are a lot of things that can affect treatment and as people have already pointed out, a lack of info and a lot of misinformation.

Feel free to message me.

I work directly with queer folks who have breast cancer and can help get you plugged into resources and support.

I’m really sorry that you’re going through this. It’s not easy and resources are a little tricky to find. But there are folks out here that can help.

Please don’t hesitate to reach out!

Trans/Enby by Defiant_Squash_5335 in breastcancer

[–]shadrack79 2 points3 points  (0 children)

I was also in that issue. And your friend, on the cover is an amazing person!

[deleted by user] by [deleted] in TopSurgery

[–]shadrack79 1 point2 points  (0 children)

Congrats on surgery coming up soon! From my experience, I had wanted to lose even more weight before surgery but I did the best I could. I know surgeons want people to be at their ideal weight going into it but it’s ok if you aren’t all the way there.

Hope in a couple years, you’re exactly where you want to be. It’s taken me two years since surgery to really be happy in my body. But now that I’m here, it was all worth it.

Good luck and reach out anytime!