Community Member
7 months agoI have read posters describe leading very healthy lifestyles prior to their cancer diagnosis. They couldn’t understand how it could happen, and lost faith in trying to live healthy. Anyone that finds themselves in this situation, please investigate gene testing for cancer causing gene mutations. You very possibly have either the BRCA or the PALB2 gene mutation (as I do.) If you do, you’ll need specific treatment, including PARP inhibitors, not the standard protocol, which will not work for you. Keep the faith, everyone. Lots of your own research, cuz I’ve found the docs won’t do it. And of course, prayer. ❤️
Accepted Answer
Thank you for sharing this important information about genetic testing and advocating for patients to be their own health advocates. Genetic testing can indeed provide valuable insights that help guide treatment decisions, and it's encouraging to see community members sharing their experiences with different testing options. Many patients find that combining self-advocacy with working closely with their healthcare team, including genetic counselors when available, helps them feel more confident about their treatment path.
3+ patients found this helpful
Community Member
6 months agoWell I fit into that category. Don’t know how I felt fine and was diagnosed with stage 4 mestatic breast cancer. I have had genetic gene testing it was negative. Still wondering.
Community Member
6 months ago“Do your own research.” Truer words have been spoken. There was a podcast I found from this site that was a huge help in affirming I was making the right decision.
Community Member
6 months agoVicki, I always tried to live a healthy lifestyle and never smoked, daily walking for miles, active job as an RN, normal low weight, no alcohol, etc. Unfortunately, I inherited the BRCA 2 gene from my father, but I did keep up with 6 month breast screenings with high level mammograms alternating with breast MRIs. The only thing I opted against was having prophylactic mastectomies, until I heard the word “cancer.” Also, my mother’s side of the family had a high cancer occurrences too, and my mother died of colon cancer. My one sister died of aggressive ovarian cancer, feeling she also had the BRCA gene, that I was tested for after she died. My mom and sister also lived a healthy lifestyle, very active, no smoking or drinking, and raised us with healthy homemade and home grown foods. My feelings are genetics and lifestyles add to risks of cancer, but much just can’t be avoided. My cancer is so very aggressive and a true BRCA triple negative and rapid 95% growth tumor, but I’m doing as told by my Oncology team and keeping my faith and trust in God, even though I am afraid and get frustrated sometimes. My Oncologist has commented that the inherited gene makes treatment needs more aggressive and there are less options with triple negative cancers. I’ve seen so much in my years of working critical care, and lifestyles definitely add to health risks, but one cannot change inherited genetics.
Community Member
6 months agoCheck with research that the Cleveland clinic is doing for BRCA patients. They are able to make a vaccine using your own cancer cells. Worth looking into.
Community Member
6 months agoKaren, Thank you. I’m aware of research on a breast cancer vaccine in the making, but wasn’t aware of one specific for BRCA patients. I had been in the high risk monitoring program with Hillman Cancer Center since the BRCA gene was diagnosed. Initially, my triple negative IDC breast tumor was around 2 .5 mm, in surgery 9 weeks later, a second tiny tumor found but thankfully I opted for double mastectomies as recommended. I was stage 1 grade 3 initially. Oncologist felt the Ki of 95% actually caused the one tumor to break off from such rare rapid growth. He tossed around the idea of chemo at that time, but I ended up with 3 month scans and more frequent labs and tumor markers. My breast margins and 3 nodes were negative in surgery but I had developed regional axillary single node metastasis found about 9 months later and that is when I began aggressive 9 months of Chemotherapy, radiation, and now PARP inhibitors. I also had the second surgery to clean out the one necrotic node, and my post scans were clean. Immunotherapy not an option for me because of 5 autoimmune problems and too risky. I’m for another PET in a week… as you know, this is a scary journey. Best wishes and prayers 🙏 I will inquire about the vaccine.
Community Member
6 months ago🙏
Community Member
6 months agoI was incredibly healthy. Vegetarian most my life, run 5 miles, 5 days a week. I have zero mutations. Zero family members with cancer. I worked in cancer research for 20 years and worked with some nasty chemicals, isotopes and chemos to help cure people. So that’s my guess, exposure.
Community Member
6 months agoI thought breast feeding helped to reduce chances. I nursed my 3 kids but was diagnosed with DCIS and had one mastectomy.
Community Member
2 months agoThank you for sharing this important information about genetic testing and advocating for patients to be their own health advocates. Genetic testing can indeed provide valuable insights that help guide treatment decisions, and it's encouraging to see community members sharing their experiences with different testing options. Many patients find that combining self-advocacy with working closely with their healthcare team, including genetic counselors when available, helps them feel more confident about their treatment path.
Community Member
a month agoI had the genetic and braca testing done. They both came up negative. But when my Dr. looked in the tumors she saw the brca 1 .My cancer is not from heredity it’s from all the estrogen I took so I wouldn’t go through the hot flashes. So be well and stay safe.
Community Member
a month agoThank you, Mary Z. That’s new to me, I had no idea that the BRCA mutation could be a somatic mutation in addition to being a germline (inherited) one. I also had done HRT right before developing breast cancer, but I think that merely sped up growth. I still believe my PALB2 mutation is what caused the cancer. I’m taking Lynparza now, in addition to adhering to the metabolic diet, which my research has shown creates a hostile environment for cancer cells to survive. I’ll keep everyone updated on whether it works. 🤞
Community Member
12 days agoHi I’m Mary I too had the genetic testing done twice. Both times they came up negative. The reason for my hell was because of all the estrogen I took in my 40s to avoid menopause with the flashes. I did have a complete hysterectomy. Now after my Dr. did the testing she looked in the tumors and found the Braca 1. Now unfortunately I’m back on chemo after 12 yrs cause my markers were really going high. I had breast cancer was in remission for 8 yrs than four years ago it spread to my back and I have a tumor on my spine. But now I’m doing better. The treatment sucks but it is what it is. Hope u’re well and continue to feel good. Mary
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