#previvors

[chemobeanies]

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[arcusplasticsurgeryclinic]

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[pdqcards]

I don't often share personal stories but tomorrow marks 8 years of being a #previvor I have a faulty #brca2 gene meaning I had an 85% chance of developing #breastcancer. I made the decision to have a preventative double mastectomy surgery at @royalsurreycountyhospital to reduce my risk. The knowledge I gained from talking to my family helped us to investigate what was causing our cancer problems and do something about it. Knowledge is power. In this case it probably saved my life. Photo is of me two weeks after surgery with two of my four post op drains, fondly known as Mopsy and Topsy. I felt bloody awful but hugely relieved. https://www.instagram.com/p/ClmjSTEjNj-/?igshid=NGJjMDIxMWI=

[ehs-consultants]

One Team. One Dream. Let’s Find A Cure

www.ehsconsultants.com...

[utopiamedspa]

Christie’s surgical journey will shock you. Upon finding multiple, painful lumps in both breasts in 1999 Christie did everything she was supposed to; she made an appointment with a doctor for evaluation but was told that the lumps were benign and to return for surgery ‘when they actually became real cancer’. ”Insurance was not going to cover the cost of a very expensive surgery. I tried everything in the hope they would go away on their own. I changed my diet. I prayed with my husband. We finally decided that I should see a plastic surgeon and I wanted the best and back in 1999 that was Franklin A. Rose, M.D.” said Christie. After learning she carries the BCRA genetic mutation, Christie opted to have her ovaries removed at MD Anderson. We want to acknowledge during Breast Cancer Awareness month the life-saving impact of her double mastectomy by Dr. Rose and her surgical team. Christie will have what she hopes to be her final surgery, for a while anyway, tomorrow and the Fox News camera team will be there to see if her 23-year-old implants ruptured when she heard a “popping noise” recently. GENETIC TESTING SAVES LIVES! Tune in to @Fox26Houston morning news with Emmy-award-winning journalist @MelissaWilsonfox26 News on Monday, October 17th & learn more about Christie’s incredible journey on our blog -LINK IN BIO- #fox26forlife #hollyroseribbon #thinkpink #genetictestingsaveslives #previvor #geneticpredisposition #brca1 #brca2 #preventivemastectomy #breastcancerawarenessmonth (at Utopia Plastic Surgery and Med Spa) https://www.instagram.com/p/CjZJPllJShM/?igshid=NGJjMDIxMWI=

[contentment-of-cats]

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.

[lifesapolyp]

Familial Adenomatous Polyposis and its variant Attenuated Familial Adenomatous Polyposis are both hereditary cancer syndromes with many cancers associated but the primary focus is colon cancer as it will occur without proper monitoring and treatment.

Monitoring for FAP and AFAP need to begin upon birth or as soon as a diagnosis is obtained.

NCCN guidelines are for a child at risk of FAP is to be genetically tested upon birth with monitoring for Hepatoblastoma through age 5 and colon cancer monitoring to begin at age 10 unless symptomatic before.

With proper monitoring, FAP and AFAP patients can become previvors of cancer(s) rather than survivors.

FAP runs long in my family. I am a previvor of colon cancer and gallbladder cancer. My mother is a survivor of colorectal cancer. And my grandfather survived colon and rectal cancer separately but succumbed to esophageal and stomach cancer.

If you suspect you or your child may have a hereditary cancer syndrome, please talk to your doctor and a genetic counselor for genetic testing.

[armygirl1us]

Check out this listing I just added to my Poshmark closet: Previvor tank top.

[archiveofkloss]

View this post on Instagram

A post shared by Bobbie (@bobbie)

november 22, 2023 / bobbie’s instagram

karlie partnered with Bobbie to sponsor 121 survivors and previvors of breast and gynecologic cancers with a year’s supply of Bobbie

love this so much 🫶

[sethmeeyn]

'It saved my life' | Breast cancer 'previvor' shares her story of preventative care - YouTube

Yes, men can get breast cancer too. Here are the warning signs. KHOU 11 New 52 views · 13:32. Go to channel · Long COVID: What Do You Need to Know?

[phdsobko]

Genetic Diagnosis of Schizophrenia and Bipolar Disorder. Siddhartha Mukherjee. The Gene. A Fragment. Read by Alex Sobko from Alexander Sobko on Vimeo.

Genetic Diagnosis of Schizophrenia and Bipolar Disorder. Siddhartha Mukherjee. The Gene. An Intimate History. Post-Genome. Chapter: Genetic Diagnosis: “Previvors”, A Fragment. Read by Alex Sobko, PhD, MSc.

Copyright © 2016 by Siddhartha Mukherjee. © 2016, 2017 Scribner, An Imprint of Simon & Schuster Inc., New York, US. © Read, recording, edit, design, post at social media by Alex Sobko, PhD, MSc, 8762728, South-West IL (ישראל).

[rachfont]

On the outside, when people first see me, they think “Oh, she seems like a normal 29 year old.” However, those who get to know me would say I’m more… eccentric, quirky, a goofball, chatty, etc. The list could go on 🤣 What everyone doesn’t see is that I am one of the 1 in 500 people diagnosed with a #brcamutation Today is #nationalprevivorday, which falls between the end of September (#gynecologicalcancerawareness month) and the beginningOctober( #breastcancerawareness month) during #nationalhereditarycancerweek. Trying saying that 5 times fast 😅😳 Today is a day where I honor my previvorship, my previous choice of screening and my subsequent surgeries thereafter, of getting ahead of whatever future diagnosis my genes have in store for me. I honor my mom, who thought of me and my future while dealing with her own #metastaticbreastcancer diagnosis. I inherited my #brca mutation from her, as she inherited her mutation from her father. She gave me choices before dying from this disease. I refuse to say she lost her battle with cancer, because it reminds me of the Norm Macdonald from a few weeks back. My mom didn’t lose her cancer battle, she fought until the end and took out her cancer with her. I honor those in this community. From fellow #previvors, to #caregivers, to #warriors, to #survivors, and to #thrivers. This community supports one another no matter their diagnoses. Thank you to @the_breasties for everything that have done and continue to do for us. To make our stories and voices heard. To continually spread love and support to each other. For showing that we’re #neveralone 💕 (at Orlando, Florida) https://www.instagram.com/p/CUZ__4WFCVj/?utm_medium=tumblr

[emettille0911]

Hi, my name is Elizabeth and I am advocating for additional genetic information protections for BRCA mutation carriers and others holding genetic mutations that could be discriminated against by insurance companies.

Here is the link for the petition: https://www.change.org/Protecting_genetic_information

I encourage you to sign and share it.

I have a strong family history of breast cancer so I decided when I was 35 to get genetic testing. I found out that I hold the BRCA2 mutation and was never informed by anyone that I would no longer be able to get life insurance, disability insurance, or long-term care insurance because of this pre-existing condition. Insurance carriers are allowed to discriminate and the federal GINA law does not provide protections against this. It has come to my attention that Florida is the first state pioneering these protections. I have included the link from facing our risk of cancer and powered (FORCE) which details in layman's terms the legislation.

https://www.facingourrisk.org/advocacy/advocacy-issues-detail.php?id=52#p7TP3c1_1

I am looking to advocate for similar legislation in Maryland and the rest of the country. I am going through the preventative surgeries to reduce my risk but that is still no guarantee that I will be able to get such coverage. I would be more than happy to talk with you about my personal experience and story if you would like. Please sign and share this petition. Thank you for your consideration and your time.

[utopiamedspa]

Sending heartfelt thanks to Angelina Jolie for famously sharing her family’s health history and introducing so many of us to the importance of genetic testing. Angelina’s mother, actress Marcheline Bertrand, had both breast and ovarian cancers, and died from ovarian cancer in 2007. After learning she shared the same BRCA1 mutation as her mother, in 2013, Angelina opted to have a risk-reducing double mastectomy and also had her ovaries removed. While Angelina has not had breast cancer, we would be remiss if we did not acknowledge during Breast Cancer Awareness Month the impact of her very public story which has undoubtedly resulted in innumerable women learning of their own genetic predispositions and taking similar possibly life-saving actions. Women with a BRCA1 mutation have an up to 87% chance of having breast cancer in their lifetimes, and an up to 63% chance of having ovarian cancer. GENETIC TESTING SAVES LIVES!

#myfaultygene#genetictesting#geneticcounseling#genetictestingsaveslives#previvor#geneticpredisposition#brca1#brca2#palb2#atmgenemutation#tp53#chek2#bard1#brip1#cdh1#nbn#nf1#pten#rad51c#rad51d#stk11#preventivemastectomy#angelinajolie@angelinajolie#brcastrong#breastcancerawarenessmonth

[bringyourbrave]

Having an increased risk for breast cancer does not guarantee you will get breast cancer – but knowing your risk can allow you to take charge of your health  and take steps to manage it. Learn more this Breast Cancer  Awareness Month:  http://bit.ly/2v2z08n

[armygirl1us]

Check out this listing I just added to my Poshmark closet: Previvor tank top.