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Delouest t1_jbyydlg wrote

Cheers, I've tried to explain to my friends and family that even though I did chemo, mastectomy, and reconstruction (no rads in my case) in 2019-2020, I am still being treated with tamoxifen, and because I am BRCA2+ I have a lot more surgeries ahead. They often congratulate me on being "done" and "beating cancer" but it is a constant, ongoing process that still means I am at the hospital for scans and checkups 6 times a year. All the best to you.

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BluebellsMcGee OP t1_jbz1jvl wrote

Yes -- people want me to reassure them that I'm "okay now," or "in remission," or "cured," or that the surgery "got it all out," or "had clear margins." When they ask like that, I know they want me to reassure them; they don't really want to hear the nitty gritty of how I'm doing, and what other treatments are still ahead of me.

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newleaseonlife1 t1_jbzk6o6 wrote

I'm BRCA2 and CHEK2 as well. It means you are never done in my mind. I've had an oophorectomy and mastectomy, but I need colonoscopies every 3 years, skin scans every year, etc.

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Delouest t1_jbzl5fk wrote

Yeah it's neverending. I had the mastectomy at 31 when they found the cancer, and I'm 35 now and we're starting to discuss removing my fallopian tubes now to reduce the ovarian cancer risks and ovaries later since I can't take hrt and my family history has issues related to menopause (very weak bone and heart health on my mom's side). Already had to have a surgery to check for issues with growths from tamoxifen after 2.5 years taking it. I'll probably be doing the tubes this summer. I want to eventually speak with my plastic surgeon about removing my implants and going flat. I've not "warmed up" to them and live in constant discomfort from the implants and just kind of want to be done with that. Anyway, chek2 and brca? Damn that's unlucky. I'm really sorry.

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newleaseonlife1 t1_jbzm2du wrote

I had the mastectomy and clotted twice in surgery, which led to a huge necrotic wound that took 3 months to heal. That led to a blood disorder diagnosis. In revision surgery, I got a staph infection, my incision ruptured, and I needed IV antibiotics. The CT scan found an enlarged heart. And this is all WITHOUT cancer. Yet. Oophorectomy was ok, but I struggled for a bit when I had to get off the estrogen due to the blood disorder.

Have you considered a DIEP reconstruction? Even with all the problems I have, my boobs/figure look pretty great, I feel somewhat like myself again (loss of sensation is hard) even though I lost a nipple due to necrosis. It'll get reconstructed. I'm really happy with how realistic everything looks and feels. It was a really rough recovery the first 2 weeks and I just had to move really really slow, but I was back to myself 6-8 weeks later aside from strenuous exercise

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Delouest t1_jbzmtq4 wrote

You've really had a string of terrible luck!

My surgeon said I'm not a candidate for diep due to being to small and I have pretty bad asthma and can't be under anesthesia for the length of time they'd need. I think that was his explanation. This was in 2019 and I was more concerned with the cancer and treatment and just kind of accepted what my team was telling me the plan was. At this point I'd honestly be happy to be flat. I was never very attached to my breasts, and I won't be able to get feeling back either way, so it's just kind of moot. At the end of the day though, I'm probably going to avoid extra surgeries so it's probably going to be just whatever they say I need to replace the current implants and just do it at the same time.

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newleaseonlife1 t1_jbzq9u2 wrote

So have you!!

That makes total sense. The length of the surgery is hard on anyone, and you shouldn't go through a recovery like that if you ultimately don't care as much.

I very very much get that "Idgaf I just wanna be done with it" feeling. Shit has been so rough I wanna keep my plastic surgeon as my emergency contact 🤣🤣. I don't even wanna have a gallbladder removed without him in the room

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BluebellsMcGee OP t1_jbzp5gf wrote

Out of curiosity, what's your blood disorder? I have FVL and MTHFR, which is why I chose implant-based reconstruction rather than autologous reconstruction.

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newleaseonlife1 t1_jbzpver wrote

My blood disorder is unknown. I've had high factor VIII and protein S, high RBC and high hemoglobin. My cbc and coagulation workup is literally different every time. Until they have a better idea, my treatment plan is lovonax after surgery.

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emmet80 t1_jd6ia0s wrote

Can either of you say more about this? I am considering my surgical options and also have MTHFR and FVL mutations.

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BluebellsMcGee OP t1_jd6kii2 wrote

Because I had FVL, there was an increased risk of an autologous fat transfer failing. I opted for silicone reconstruction.

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AskMrScience t1_jbzubbi wrote

You're the first CHEK2 person I've met aside from my friend Debra. A few years ago, Debra went in for surgery for abdominal pain that everyone thought was an ovarian cyst and they found fucking appendix cancer. You have never heard of it because it is not a thing - it's literally "1 in a million" rare. When she told her doctors "Oh yeah, my uncle was diagnosed with appendix cancer, too", the surgeon told her to run, not walk, to a medical geneticist. Surprise, CHEK2 mutation! It explained why breast and ovarian cancer run in her family, but everyone had tested negative for the common BRCA1/2 mutations.

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newleaseonlife1 t1_jbzwfo5 wrote

My friend Katie died of her chek2 mutation at age 32. It was long and horrible and she told me that if she could go back, she'd get the surgeries. It's not as famous as BRCA but it has a range of health effects. No woman on that side of my family has lived past 50

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AskMrScience t1_jbzznvu wrote

Debra was also about 30 when diagnosed. She got lucky: if you catch appendix cancer in Stage 1 like they did for her, it's basically "snippy snippy, congrats, you're cured!" She's since had all the other recommended prophylactic surgeries and gotten her kids genetically tested.

I'm a geneticist working on cancer treatments, so this is all Relevant To My Interests. Most hereditary cancer syndromes are caused by a DNA repair or checkpoint gene being mutated (no surprise, CHEK2 = checkpoint gene). I'd think you'd be equally likely to get cancer in any tissue type with that kind of problem. But instead, there are very strong patterns to which organs the cancers tend to start in.

Hooray for being able to ID these mutations and what tends to go wrong. Now we have some clue what to watch out for in each person. And I wish you better luck going forward.

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