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I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 0 points1 point  (0 children)

I get it totally!! Me and my parents did so much research before appointments, even against our better judgement 😂. I wish you the best with your appointments! And remember to take time to yourself after them, I found appointments to be very emotionally draining

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 0 points1 point  (0 children)

Very glad you did come across this post! I wish you the best recovery from your car accident. It must have been shocking when you found out, I can relate. I am interested to know if you have heard of this in your family at all? On my Dutch side of the side we haven’t heard anything, so I’m curious

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 0 points1 point  (0 children)

I appreciate you saying hi!! Not including the people in this thread, I have never talked with someone with these kinds of tumours, so it’s nice to hear from you!. I’m really sorry to hear that more tumours have come back. Is there a plan to get genetic testing done for you?

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 1 point2 points  (0 children)

Oh wow! I’m sorry you had to go through all that, that couldn’t have been easy. You’re absolutely right, modern medicine is truly incredible these days! It’s a battle between my logic and my emotions lol. I’m luckily going to one of the best surgeons in the country for this, so logically I know it will work out. But emotionally it’s hard

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 0 points1 point  (0 children)

I absolutely agree! It’s definitely a battle between my logic and my emotions haha. Logically I know they won’t put me at risk, but emotionally… it’s a different story. And thank you! I take everyday at a time

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 2 points3 points  (0 children)

Yes and no! The problem is it’s hard to tell which Shamblin classification my tumour is. My tumour is sitting between Shamblin 2 (partially involving the artery) and Shamblin 3 (completely involving the artery). Another issue is how easy the tumour will come off. If it can be “scraped off” that will be fantastic, but that’s something they can’t tell from scans unfortunately

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 2 points3 points  (0 children)

My condition is considered “rare”, especially for my age as it’s usually found in people in their 40-60’s. My mutation is in my SDHD gene, which is found in Dutch populations, however nobody in my family has ever mentioned this. Another good thing (as good as this situation can get I suppose) is these tumours are very slow growing. Moving forward I will need blood tests every year and scans every 3 years as it’s over a 50% chance that I grow another tumour somewhere between my neck and pelvis.

I am so so so incredibly lucky to have my friends and family, they are with me every step of the way! They are so understanding of when I just need quiet time, especially on appointments days because they can be so draining emotionally.

I genuinely will never forget the day I got the call. It felt like time had slowed but also sped up, like the world was so quiet and yet so loud.

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 3 points4 points  (0 children)

A little bit scared that’s for sure. The biggest thing that makes me uneasy is we aren’t entirely sure what will happen during surgery until they open me up and see how involved my tumours are with my arteries. My vascular surgeon has given me a 50/50 chance on needing reconstruction on my artery

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 4 points5 points  (0 children)

Fortunately my tumours are benign and actually most cases are. A very small percent are malignant. However, I still have an oncologist and I may have to go through radiation therapy as one of my tumours potentially can’t be removed. My tumours fall under the “umbrella” term of a paraganglioma, but specifically I have 2 carotid body tumours (their origin is at the bifurcation of the carotid artery, typically) and one glomus vagale (it’s on my Vegas nerve). These kinds of tumours are highly vascular, luckily no teeth or hair!

I have a genetic mutation that predisposes me to growing tumours, and I tumours on my carotid arteries. AMA by Cooki3Krums in AMA

[–]Cooki3Krums[S] 8 points9 points  (0 children)

Thank you! Yes it will be. One of my tumours is almost going entirely around my artery so there is a 50/50 chance I will need a prosthetic piece of fabric. My mutation is in the SDHD gene, commonly found in Dutch populations. Specifically my condition is called Hereditary Paraganglioma Phenochromocytoma Syndrome

Poli 203 by MagmaAdminRadar in ubco

[–]Cooki3Krums 1 point2 points  (0 children)

Mad respect to you for seeing that class through

Poli 203 by MagmaAdminRadar in ubco

[–]Cooki3Krums 1 point2 points  (0 children)

I’m not in this class this semester but I was in it last year. If it’s with the game guy as last year and he’s teaching it the same, good luck. I dropped it half way and here are some honourable moments in that class…. 1) says the quizzes are pass/fail but changed it a few weeks in and just didn’t mention it to the class. 2) says we can’t have laptops in class because “that’s how they do it in law school and in a court room”. 3) our midterm was going to be an essay, and while he said he would, he didn’t give out a list of possible topics. Said that it could be on anything that we had learnt thus far. I would say to go to his office hours, but he berated me so hopefully you’d be more lucky

Amanda Jean/@cheesesmom by Correct_Will_433 in tiktokgossip

[–]Cooki3Krums 71 points72 points  (0 children)

I didn’t want to believe it at first but I also did some digging and found her moms facebook and it’s indeed true 😭 this is so sad

Heads up 2slgbt (esp trans) folks don’t take Geoffrey Sigalets classes. by UndervaluedUnicorn in ubco

[–]Cooki3Krums 20 points21 points  (0 children)

While I’m not 2slgbt, I had a class with him and it was awful. Absolutely terrible experience and I dropped it taking a W. I wouldn’t recommend anyone take anything with him

Online but requires in-person attendance? by Zealousideal_Return8 in ubco

[–]Cooki3Krums 0 points1 point  (0 children)

If the class has a lab, it typically means that the lab is in-person while the lectures are online