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#brca mutation
ancient-healer · 11 months
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pinkybuttons · 1 month
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mutuals. friends and relations. can everyone cast a 10,000 explosion attack on genetic health queensland pls. thank you.
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roseband · 2 years
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me on a reddit thread: hey it might not be a good idea to make estrogen combo pills OTC (even though progesterone would probably be fine) cause clotting disorder based strokes aren't in the numbers of side effects stats cuz america is dumb about things that are "preexisting"....and also my mom's stroke at 27 definitely isn't counted in the numbers (nor would hailey beibers btw....cuz she had the perfect storm of combo pill hormonal bc, covid, plane ride, and an undiagnosed heart issue so they can't pin it on the estrogen in a suit to a pharma company)
some twat: wellllllll if you donated blood twice monthly you'd neeeeeever have a clot
Like source please....cuz the lieden v thrombophillia foundation (which is my family's mutation I was lucky enough not to get (even though my rheum thinks that's the side my likely CTD comes from....great.....)) has NOTHING about it. I am SURE my aunt and mom would have preferred extra blood draws done to 3x daily self injectable heparin shots when having my cousins and i......when pregnant you can't take the pills, it's gotta be the shots (and this is with them both as single gene carriers lololol)
don't talk out of your ass about health conditions wtf....But only 1/300 women a year will develop a blood clot on OTC estrogen menopause meds.... ONLY 1/300.....ONLY.
#personal#to the tune of happy and you know it: *external factors dont change your genes* 👏👏*external factors dont change your genes* 👏 👏#*unless its in cancer and you raised the chancer* *external factors dont change your genes* 👏 👏#HIGH SCHOOL LEVEL BIOLOGY JESUS FUCKING CHRIST KILL ME#i cant live on a planet in a country with people this WILLINGLY stupid#your entire body genetic makeup isnt changed by a little NEEDLE pulling a few pints of blood out..............#(nor did a medication change your whole body's genetics...nor did a mRNA vax......nor did covid.......)#even fucking cancer is localized gene mutations in specific areas which is how they can tell where metastisized cancer starts#my moms on anastrozole as preventive care and like thats the one also used for metastisized BREAST cancer but its not for brain cancer or#blood cancer or bone marrow cancer or gallbladder cancer or.... or..... or...........#cause even CANCER isnt changing all your genes........which is why my aunt works on *gasp* gene therapy#where they isolate the genetic makeup of the tumor and use mRNA injections to have your immune system target the mutant parts of you#so it has YOU kill the tumor....so cool!!! isnt that cool!!! (her family is brca+ so she went into boobie cancer research)#((looks at my moms family like.....my aunt by marriage has two genetic disorders floating around in there...#and my moms blood relatives most likely also have two genetic disorders floating around in there oooooooof OOF))
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seagull-astrology · 10 months
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C121 BRCA-2 mutation and Kaleigh McEnany
Kaleigh McEnany is the former Trump White House spokeswoman. That is a perfect job for someone that is a Bucket with Pluto handle, her planetary pattern. Kaleight was diagnosed positive with the BRCA-2 mutation when she was twenty-one but she waited to have the preemptive double mastectomy after she was married and have her daughter, Blake Avery. I guess with a Cancer Rising she wanted to enjoy…
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onealgraversen00 · 11 months
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Nf-κb Signaling In Tumor Pathways Focusing On Breast And Ovarian Cancer
ORR and a fifty seven per cent PSA response had been introduced. In sufferers without BRCA mutations, the tumour response price was solely eleven per cent and PSA response 6 per Many of those small molecules are able to restoring the expression of p16INK4a in various cancers. Genistein, an isoflavone current in soybean, is a cancer chemopreventive agent that inhibits cell proliferation and induces apoptosis (Gullett et al., 2010 ). Li et al. reported that genistein represses early breast tumorigenesis by way of epigenetic regulation of CDKN2A by impacting histone modifications as properly as by recruiting the BMI1-c-MYC complicated to the regulatory area in the CDKN2A promoter ( Li et al., 2013b ). In prostate cancer, treatment with genistein increased acetylated histones 3 and four of the CDKN2A transcription start sites ( Majid et al., 2008 ). Thus, soybean merchandise containing genistein could be helpful in preventing breast and prostate cancer by way of transcriptional activation of CDKN2A by modulating its epigenetic silencing ( Li et al., 2013b  and Majid et al., 2008 ). Rajendran et al. reported that Nrf2 wildtype mice confirmed a better incidence of colon tumors than Nrf2 heterozygous (Nrf2+/− ) mice when handled with 1,2-dimethylhydrazine. Pancreatic screening in high-risk patients such as BRCA2 mutation carriers has been proposed to reduce PDAC-related mortality. In 2012, the International Cancer of the Pancreas Screening (CAPS) Consortium revealed pointers on the management of patients with elevated risk for familial PDAC (Canto et al. 2013). Just as a result of the genomic check doesn’t pick up a prostate cancer mutation does not mean you don’t have mutation/s that causes prostate cancer. advanced tubo-ovarian cancer. The current commonplace of care in the first-line setting for most sufferers with newly recognized superior tubo-ovarian cancer is platinum-taxane chemotherapy and cytoreductive surgery with a goal to remove all of the seen cancer. significant dose discount and delays. In HRD-positive metastatic pancreatic cancer, veliparib with FOLFOX (folinic acid, fluorouracil, and oxaliplatin) chemotherapy confirmed an ORR of fifty per cent, median PFS of seven.2 months, and median OS of eleven.1 months. In breast cancer, the section three BrighTNess trial randomly We have been actually anticipating one thing as his dad died of prostate cancer and his mom died of breast cancer....but nothing hereditary found. He then took the Guardant blood take a look at and a variety of other variants/mutations have been found, which expanded his therapy options. Reactivation of silenced CDKN2A or the inhibition of epigenetic repression of the gene could be a rational strategy for the prevention or remedy of varied cancers. In comparability with previous trials such because the practice-changing SOLO-1, which was carried out in a My cancer has PTEN misplaced which facilitates the copy of the cancer cells. FOXA1, Si-ZBP-89, Jmjd3, Mutant UHRF1 and c-JUN induce p16INK4a protein expression by re-activation of the CDKN2A promoter. Schematic structure of the INK4a /ARF locus and the function of p16INK4a in cells. of olaparib with bevacizumab as first-line upkeep remedy for advanced tubo-ovarian cancer, no matter BRCA1/2 mutation status. The Monte Carlo simulation of 1,000 patients confirmed that the cost and effectiveness within the PFS illness section have been $3,124 ± $1,534 and zero.905 ± 0.449 QALY for placebo and $139,563 ± $33,046 and 1.544 ± 0.408 QALY for maintenance olaparib. The cost-effectiveness acceptability curve confirmed a nearly 54% likelihood of maintenance olaparib and 46% probability of placebo being a cheap strategy at the threshold of $200,000 per further QALY gained (Figure 4). Furthermore, olaparib didn't significantly improve outcomes in cohort B that comprised different HRD mutations. The trials; PRIMA, PAOLA-1, and VELIA, offered at a Presidential Symposium on the Congress, provide evidence of improved survival for almost all affected person brca1 pancreatic cancer risk sub-types in high-grade superior tubo-ovarian cancer. The enhanced Warburg impact in addition to the elevated production of lactate in ATM-deficient CRPC cells prompted us to determine which enzyme within the glycolysis pathway is regulated by ATM deficiency. Actually, we examined the mRNA stage of LDHA in addition to different enzymes along the glycolysis pathway by RT-qPCR in the two cell strains. Only LDHA was dramatically upregulated in C4-2/ATM-KO cells (Fig. 4B), and this upregulation is further supported by the western blot displaying ~three-fold increase of LDHA protein expression in ATM-KO cells (Fig. 4C). To additional confirm the upregulation of LDHA by ATM loss, we handled C4-2 cells with ATM inhibitor KU and located that the expression of LDHA increased after 72-h therapy of cells with KU (Supplementary Fig. 2).
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pathologylab · 1 year
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The breast cancer panel at Genes2Me uses benchtop Next Generation Sequencing (NGS) based analysis to screen pathogenic mutation in BRCA 1 & BRCA 2 for breast and ovarian cancer. BOOK NOW!! https://t2m.io/brcas For more details, Call us at 18001214030 or drop us an email at [email protected] to know more about the product.
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jmd-creative · 2 years
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elanaspantry · 2 years
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At age 55, I’ve had plenty of experience with the US healthcare system, navigating diagnoses including MS, Celiac Disease, and Hashi’s. But getting tested for the BRCA gene was next level. Although I’m of Ashkenazi Jewish descent and have a family history, my healthcare provider told me I could not get tested for the BRCA mutation. Are your healthcare providers your ally? Are they part of the solution or part of the problem? Leave a comment and LMK. And for more info, I wrote extensively about this experience on the blog as well as the ins and outs of the BRCA mutation. https://elanaspantry.com/what-is-breast-cancer-genetics-testing/ #BRCA #genetic #gene #mutation #brca2 #health #genetictesting #genetictest #healthcare #womenshealth https://www.instagram.com/p/CdyhkR3uKcV/?igshid=NGJjMDIxMWI=
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a-d-nox · 5 months
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what's a dna (asteroid 55555) persona? what can a dna persona chart show you?
hypothetically, your dna chart can tell you more about the genetic predisposition of your health, what genetic diseases and mutations you are at risk for, your ancestry, and your genetic traits.
mini disclaimer: genetic/ethnicity/ancestry can be a delicate subject for a lot of people - this is is topical post about what the planets and houses could mean. i am not a doctor or geneticist - this chart can not be used to diagnose health issues/problems or anything else with 100% accuracy.
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sun
your genetic identity, your projected vitality, genetic predispositions you should pay attention to, genetic prominence, genetic connects to royal/famous/infamous individuals, and/or how your genetics are different from your ancestors / what makes you an individual (not a clone - or perhaps different from a twin)
moon
what you inherited from your mother, your family's heritage, how your ancestors have adapt/evolved to make you who you are today, neanderthal ancestry ratios, hereditary menstrual issues, genetic fertility factors, and/or the brca / pcos / uterine fibroids gene
mercury
genetic mental health conditions, neurological conditions/diseases, taste/smell/hearing, how you can change your genetic "fate," what genetics can be forgot, aptitude to speak the languages of your ancestors, and/or how your daily routine affects your genetics (nature versus nurture)
venus
genetic attraction / who you attract to create viable offspring that is meant to survive, your genetic beauty, your ability to preform self love (aka your ability to cope with hereditary depression and anxiety), genetic hair type, genetic femininity (xx, x0, xxx, etc), genetics you share with a majority of your family, values and festivities with have due to heritage, genetics diabetes, genetic cheerfulness versus depression, and/or pcos gene
mar
genetic confidence in public speaking, competitiveness that makes your genes superior to past generations, genetic athleticism / muscle composition, genetic masculinity (xy, xxy, etc), genetic dominance, and/or prone to violence (neanderthal influence)
jupiter
where you are lucky in the genetic lottery, where you have an abundance of genetic information, where are successful in breaking genetic trends, your opportunity to beat the genetic odds, your knowledge of your genetic makeup, genetic blessings, where you can afford to be optimistic about your health, and/or genetic predisposition to macular degeneration
saturn
what you should work hard to be your genetic makeup, genetic health challenges, what you inherited from your father, genetics fears/anxieties, how long you can live if you are healthy, your genetic limitations, ancestry, genetic deficiencies, and/or the effort you make to beat your genetics
uranus
genetics of social anxiety, sudden changes historical genetics - where you are the first in your family diagnosed with a genetic mutation/disorder, what makes you genetically unique, and/or shocking/unexpected ancestry/origin
neptune
genetic alcoholism/escapism, hidden genetic knowledge or ancestry, delusions surrounding your heritage, disappearance of heritage, and/or the fascination you have with your ancestry and genetic
pluto
genetic transformation, the power in your genes, genetic sex, destructive genes, you genetic projected death, regenerative genes, your obsession with your genetics and heritage, and/or your genetic evolution
1h
genetic identity/self, outward physical traits / appearance, physical body, physical genetic build, genetic individuality, and/or passion for genetics
2h
genetic wealth, effort you put in to beat your genetics, genetic material, values surrounding your heritage, genetic stability, giving/receiving your heritage, and resources surrounding your genetics
3h
how your genetics are communicated, genetic mental health issues and disabilities, your opinions about your heritage, how you can consciously fight your genetics, genetic relationship with your siblings, interest in your heritage and genetics, and/or information you have on your ancestry and genetics
4h
genetic/familial origins and roots, your parents genetics, how you were treated in childhood based on your genetics, heredity traits, traditions you upload because of your heritage, and/or genetic femininity
5h
your children's genetics, creative methods of celebrating your heritage, who you are attracted to based on genetics/ethnicity, vacations you take to reconnect with your heritage/ethnicity, hobbies/festivities/traditions that are related to your ethnicity, and/or genetic fertility (pcos, fibroids, etc)
6h
how your daily routine is affecting your genetics or rather triggering your genetics, your genetic health, how fitness/hygiene/medication/diet can benefit for life expectancy because of genetic factors, the self improvement you do to fight genetic pre-destiny, how consistency aids/harms your health, how you help others to better understand their origin, and/or genetic analytics
7h
your significant others' ethnicity/heritage, genetic attraction, genetic attractiveness, contracts with genetic storage banks (for instance mine is in a 23&me storage data bank), how others treat you based on your genetics, and/or genetics share with those in your family
8h
dna mutations, projected longevity based on your genetic makeup, changes you should make to live longer, how much time invest into getting to know more about your genetics and heritage, what you inherited from your ancestors genetically, genetic reproductive rates, assets of your ethnicity, secrets about your ethnicity, the spiritual transformation that occurs when you learn more about your heritage/roots, and/or trauma related to race/ethnicity/heritage
9h
beliefs/religion/ideologies associated with your roots, what can learn about your heritage/ethnicity, languages associated with your roots, where your ancestors immigrated or where they emigrated from, genetic ethics, and/or what you can learn about your ancestors
10h
your genetic legacy/offspring, what the world believes your origins are, how you can beat genetics, long-term health goals you may have, what you inherit from your father, and/or genetic experts in your life
11h
what you gain from having knowledge of your ancestors, genetics you share with a half sibling, what makes you genetically unique, how technology can help you learn more about your genetic background, social awareness you have others ethnicities/culture/heritages, and/or how your genes manifest
12h
how you can heal using your genetic information, the hidden features of your genetic code, your projected age, how well you sleep based on your genetics, mental health issues you have a predisposition to, genetic fears you have in place so that you can survive, what you don't know about your genetics, and/or how you should restrict yourself to promote longevity/vitality
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If you have boobs, listen to them.
I’m not great about listening to my body - chronic pain and working manual labor jobs for thirty years mostly make me want it to shut up, because pain is very loud sometimes.
But last June when I was at the doctor for something else (which we still haven’t figured out) that hurt a lot more, he asked if I was having other problems, because he doesn’t often see me.
‘Eh, my left breast has been kind of uncomfortable for a little while?’
Fortunately, he not only listens, but takes things seriously. Diagnostic mammogram, several years before I should have needed them for routine testing.
‘Hmm,’ said the mammogram techs. ‘Let’s biopsy that.’ (‘That’ was an abnormality in my left breast that appeared to be shaped like a piece of macaroni. Amused concern about boob noodles abounded.)
As much as I try to ignore my body is roughly how successful my body actually is at ignoring lidocaine. The biopsy - which was mammogram guided and from a medical technology standpoint, really cool! - hurt like blue blazing fuck.
‘Hmm,’ said the folks who examined the biopsy. ‘That’s weird but doesn’t appear to be cancerous, at least?’
(It still hurt. It continued to hurt worse as time went on.)
It turns out - because there was a history of ovarian cancer from my father’s side of the family and gene testing was done to check for other factors - that I’m also positive for a BRCA 2 mutation that increases my lifetime risk of breast and ovarian cancers to roughly stratospheric levels.
Thanks, dad.
So. Boobs off? Boobs off.
As it turned out, boobs off was going to take a length of time that was becoming increasingly unbearable since the pain in my breast was continuing to get worse.
‘Can we just get the noodle out?’ I asked, rather despairingly, and apparently we could!
Having a section of my boob the size of half a deck of cards excised did not hurt at all, despite my worries following the biopsy.
It did, however, show that I had cancer.
So, boobs are coming off - in a week and a half, actually, which is engendering very complicated emotions (none of them about gender, funnily) followed by chemo, possibly radiation, then reconstruction, since I’m getting it done with my own tissue rather than implants.
It’s going to be a really long year.
So, yeah, listen to your boobs, regardless of sex and gender. Breast cancer hits plenty of men, too.
And if anyone wants to help make my recovery a little easier I have a wishlist?
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I have debated for months about posting this or not. It's very personal but I am actually TIRED of people calling me out and acting as if I didn't know what I was talking about.
I want to address something about my top surgery posts, specifically the people who insist I am exaggerating or not understanding when I say there was a “biased against single people receiving surgery” or continually saying that doctors weren't being biased or whatever. I wanted to elaborate a bit on my situation and experience, both so people understand and if someone else runs into this issue that they have the confidence to ensure they receive care.
(The rest of this deals with discrimination, medical procedures, and cancer discussion. Read at your own discretion.)
A bit of background first. I was comfortable binding and after more than a year talking with a therapist had come to the point where, for many reasons, I was not interested in surgical/medical aspects of transitioning. Around that time my mother developed aggressive, stage four cancer. It was determined that it was related to a genetic mutation, several really, so I went off and got genetic testing. I did not have the mutations my mother had but I do have two others related to breast cancer, one is a mutation that represents a higher risk than BRCA. I was scheduled to have a mammogram and breast MRI every year going forward. After one MRI determined I appeared to have the fibrous tissue that is known to be more likely to develop into cancer (plus the genetic markers, family history, and being over 40). With my geneticist, oncologist and therapist, we came to the conclusion that a full oncological breast removal with gender affirming closure would be the best course of action for my health and well being. I was given a plan that included what the oncologist would do, including 24-48 or 72 hours of hospital stay for post surgery medical testing by the oncology team. (No, that you need someone for the first 24 hours post surgery did not apply to me since I would be hospitalized)
Here's where things get to biased, when I was looking for a plastic surgeons. All of the surgeons I went to listed themselves as trans-friendly and having done gender confirming surgeries. I had one surgeon flat out refuse to do surgery on me until I had a husband or wife living with me. This person also continued to call me she and refer to me in ways aligned with a straight female instead of nonbinary or transgender. Two others that insisted I at least have a roommate. One of them told me I should move and find a roommate, get to know that roommate, then come back to 'discuss being treated'. Three surgeons told me to put off cancer surgery because I didn't have a partner or roommate that I knew well. Another surgeon was doing the exam in the consult and refused to touch me after I mentioned I was pre-cancerous as if I had the plague. They asked me to dress and leave because they would not work on me. This represented months of stressing that I might literally develop cancer before being treated for all the pre-cancerous issues.
Eventually, I did find a plastic surgeon with help of my breast oncologist. They were honest with me and we spent nearly two months prepping, and several consultations making sure I would be successful going through surgery while living alone. (Yes, I still had to have someone to drive me home and emergency contacts. I had all of those at the start of the process before any of my surgical consults) It included many of the physical and environmental things I listed. Weeks of diet and body strength preparation, as well as focusing on medication that I had taken in the past, where possible, to ensure less risk of that being problematic. This included pain medications which I have experience with from a severe back injury and more recently a knee injury.
Between my therapist, oncologist, plastic surgeon, and geneticist we had a full plan and prepared for this surgery. All kinds of notes in my chart about alterations to the surgery, like longer than usual drain tubes and bandaging choices for example, that would be easier for living alone. EVEN with all of this, sitting in pre-op I dealt with whispers of no one should be working on someone who lives alone. Despite all my contacts on my surgery paperwork.. probably being asked 8 times in my hour pre-op about my care and things about how I should be scared and not really do the surgery without being married/in a long term relationship. I got the same kind of thing from some people, not on my team of surgeons, post surgery while recovering in my hospital bed.
I ran into multiple barriers and refusal of CANCER TREATMENT aligned procedures because I lived alone or didn't have a partner. The gender confirming/top surgery aspects of my treatment were secondary to the cancer issues, even in my charts and paperwork. I did not mention the bias against single people on a whim but because it was truly problematic and led to about 6 month delay in cancer related treatment. I thank everything that I didn't develop actual cancer in that time I was looking for treatment. All I think about is what would have happened If I had been less persistent about demanding care and searching for someone who could give me the care I needed in the place I was in my life.
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hero-israel · 10 months
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On the subject of the skin cancer thing: Ashkenazi Jews get cancer. Pretty much every single one of us has a family history filled with cancer, and the BRCA mutations - which 2.5% of Ashkenazim carry - makes us more predisposed to, among other things, melanoma. In the last two generations of my family alone, I can list off seven different kinds of cancer, and we're not even BRCA-positive.
So in addition to the last anon's excellent point, the "ha ha, skin cancer" people are using our genes (which are the way they are because of two millennia of antisemitism, forced endogamy, near-genocide, and the 'white'-looking ones getting to live) as a gotcha without even understanding why they mutate so much. Disgusting.
And if it matters, in the calculation of the highest increases in skin cancer rates from 1990-2017, three of the top ten countries were MENA and two were in East Asia.
.
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rileywrites-parker · 8 months
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For anyone who has been with me for the long haul and maybe, potentially remembers some of the gynecological issues I have gone through - endometriosis and adenomyosis officially rendered me infertile and in constant pain. My uterus was a war zone, completely unable to support life.
I had genetic testing done and found that I am positive for a BRCA 1 genetic mutation.
I had a partial hysterectomy about a month ago. I was able to keep both of my ovaries despite a large endometrioma on one, for the time being, with the intent being to heavily monitor changes going forward.
I am struggling mentally, to be honest. I am so lucky to have had my daughter when I did. Three different doctors told me that I never would. Many women dealing with the same diseases aren't so fortunate. It feels greedy to mourn over the lost potential of another miracle baby, but I am, no less. I wanted to be able to give her all of me, without pain or the cancer timebomb that was; I will keep telling myself this was the best choice given the data.
I don't expect a response and this post is not meant to come across as self-pitying. More or less just wanted to type it out for the universe. I'm going to be fine.
For any of you that are dealing with the same or similar - I am sorry and i understand. I see you. I hear you. Please never feel guilt or regret.
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divalectics · 3 months
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well these stats are bleak!!! maybe i should just go for total mastectomy and reconstruction. NF1 makes me 5x more likely to develop breast cancer… and my genetic testing revealed a BRCA 2 mutation (vus).
5yr survival rate compared to the general pop’s 20!!! BLEAK.
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nonbinary-vents · 4 months
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Hey, I saw your post about nobody listening to Jews and came to check out your vent blog. Saw the bit about tapping the flat part of your chest and that hit me pretty hard. This isn't a vent for you to post, just an older NB more-transmasc-type letting you know: it gets better. You'll be able to come out if you want. If there is *any* history of breast/ovarian cancer in your family, you can get a test for BRCA mutations (super common among us Ashkies) and get a preventive mastectomy (much easier to get coverage for than a "cosmetic" top surgery) and a hysterectomy. I can't guarantee that of course, but keep it in mind. Just wanted to reach out and let you know there are peeps out here who care and have been there. You can message me if you want to. עם ישראל חי!
Thank you for this. Weirdly, I'm not Ashkenazi but do actually have some breast cancer in my family, though it's verified as not genetic. It's really nice to see older nonbinary people (or even just ones who aren't under twenty five or something), it makes me feel a lot less stuck in time, if that makes any sense. We're not just a community of sad teenagers, we grow older and we transition. It just feels so far away, but at least it’s achievable
♥️ !עם ישראל חי
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contentment-of-cats · 6 months
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Text from the WP: The Ambiguity of Remission
There is an art to living in a constant state of health ambiguity — something 18 million cancer survivors in the United States well know.
When award-winning feminist literary scholar Susan Gubar was diagnosed with ovarian cancer in 2008, she assumed it was a death sentence. Fifteen years later, thanks to experimental drugs, she’s still in remission. Gubar’s brutally honest book “Memoir of a Debulked Woman” gave voice to the complexities of living meaningfully despite the specter of mortality.
I recently interviewed Gubar, 78, via email about living with cancer. As a 57-year-old blood cancer patient myself whose mother and maternal grandfather died at 60 of blood cancer, the topic is personal.
The following was edited for length and clarity.
“The question mark of remission can feel like a sword of Damocles. When will the cancer return? How long have I got?” Gubar says.
Q: You write: “Remission, I could tell you, would always have an invisible question mark after it. … Remission brings a heightened sense of contingency, of being healthy-but-only-for-a-while, and therefore the anticipation of waiting for the other shoe to drop.” How do you live with that “question mark”? How do you find joy when wellness is precarious?
A: The question mark of remission can feel like a sword of Damocles. When will the cancer return? How long have I got? And those fearful imponderables spawn others. Will there be an available treatment that I can endure? Can I bear to go through the life-in-death of being a patient again?
But if the remission lengthens, the question mark generates an exclamation mark. I have survived 15 years after a diagnosis that gave me three to five years! I received an experimental drug in a Phase I clinical study that many could not tolerate, and it worked for nine of those years! For the last two years, I have been on a drug holiday — because long-term use of the medication can cause leukemia — and I’m still here!
When the question mark of remission produces an exclamation mark, the exultation has everything to do with astonished gratitude for the bonus of unanticipated time … in which I have seen my children marry, welcomed grandchildren into the world and fussed over my beloved husband.
What more can one ask for?! There’s still a question mark, but there’s also a thrilling exclamation. With the passage of years, terror shrinks while thankfulness swells.
Q: “Watch and wait” is the medical stage when cancer is being observed but not treated. Seasoned patients know it as “watch and worry.” How do you live fully despite anxiety?
A: No one wants to be counted among “the worried well.” Yet it is impossible not to fret at aches and pains that might portend a recurrence. It is also impossible not to suffer from “scanxiety” as scans, tests or biopsies loom. I search for distractions: trying out a new recipe, watching a movie. A good book can provide a voyage away from myself into another realm.
Unfortunately, it fails to transport me on the day one of my daughters, who inherited the BRCA mutation [which heightens the risk for several cancers, particularly breast and ovarian cancers], goes into the hospital for a scan. She is among the previvors: survivors of a predisposition to cancer. I have resigned myself to the fact that the day of her testing will be given over to fright.
Q: Most people run from conversations about death. In what ways has facing death brought you clarity or comfort?
A: Like Buddhists and hospice workers and activists for medical aid in dying care, I believe that anticipating and preparing for one’s own death paradoxically leavens morbid perseverating, especially when it puts us in touch with networks of people also contemplating their proximity to the cusp of existence. Which is why I continue to attend twice-monthly meetings of my cancer support group. I have had to say goodbye to a succession of friends in the group. Our conversations help me find the praise songs, eulogies and elegies that many of us will want to accompany our dying.
With the time remaining to me — and neither the well nor the ill know how much time they will get — I do not fret about things I have left undone.
Like [Washington Post contributor] Steven Petrow, I seek joy. But, as many philosophers have pointed out, joy can be elusive. It is often a byproduct of activities related to some other goal: baking bread, making a quilt, writing a book. So, despite my physical impairments, I keep busy.
Q: Many patients find it difficult entering through hospital doors — over and over — for ongoing treatment and care. Your description in “Memoir of a Debulked Woman” hit home: “Upon arrival, the Shakespearean stage direction: ‘Enter, fleeing’ echoed like a refrain in my head.” What hacks do you use to endure hospital visits?
A: I hate entering the hospital in which I underwent so many ghastly operations, infusions, radiological interventions, CT scans and blood draws. I bring toys: an iPad (with podcasts and games on it), knitting (socks are especially portable).
Since all of my cancer history occurred in one place, I was lucky to make friends with some of the staff. Until recently, the pleasure of a gabfest with Alesha Arnold, my research nurse, offset the horror of the place; but Alesha died of lung cancer this year.
At my next visit, I will look for the plaque explaining that a fund has been established to honor her: It will sponsor an annual award for nurses who manifest her loving and meticulous caregiving. Then I will sit in the waiting room and remember how Alesha protected me from unnerving responses to my liminal situation.
Patients like me need from our companions what Alesha had: the courage not to sugarcoat our precarious conditions.
I learned from her how to pace myself to the syncopation of fear and hope that accompanies my passage in the perplexing terrain of remission, a borderland between wellness and sickness.
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