I had the distinct pleasure of meeting Maria Ricart, the President of AFA Lynch Syndrome in Barcelona this past week. She is a four-time cancer survivor; yes, that’s right, four times! I can’t fathom enduring cancer once, let alone four times. She has endured uterine cancer — twice — followed by colon cancer, and then lymphoma. FYI: lymphoma is typically not on the litany of the Lynch syndrome cancers. The good news is that she has been without cancer now for 6 years. You cannot help but fall in love with her as soon as you meet her; she is a very kind-hearted, warm, sharp woman, will impeccable taste in lavender colored fingerless gloves. The pic above is of her at a cafe she took me to on my first day in Barcelona.
I went to Barcelona for two reasons; to attend the AFA Lynch Syndrome Conference, but more importantly, to meet Maria in order to figure out how we can collaborate on a global level in regards to spreading Lynch syndrome awareness. We recognize that current methods of Lynch advocacy are not globally extensive and need to evolve tremendously; with the amazing technology we have today, there is absolutely no reason why we cannot do that. She and I share much in common and are on the same page regarding many of the issues surrounding Lynch syndrome.
I think discussing medical procedures and advancements at conferences is great, but truth be told, most laypeople don’t truly understand what the implications for such things entail. This is why is it is so important to seek out doctors who know more about Lynch than you and are at the forefront of the cutting edge research. You have enough to fret over without having to worry about if your doctor is performing the correct colonoscopy and whatnot. What differentiated this conference from others was the great amount of time spent on discussing the emotional implications of having Lynch syndrome; much of what was discussed are many of the emotions I frequently mention in my blog.
Muchas gracias for having me, Maria! You made me feel very welcomed!
If you want to learn more about Maria’s Lynch Syndrome Association, please click here: www.afalynch.com
On a side note … UCSF is conducting a study on the effects of early menopause in BRCA + women who undergo prophylactic hysterectomies and oophorectomies. This is huge and I cannot wait to see what they conclude:
As part of the three-year trial, about half the participants will have chosen to have ovarian surgery. Beforehand, each will receive full physical examinations and then will be examined regularly afterward to monitor for early signs of cardiovascular disease as well as bone strength, and undergo various tests and screenings. In addition, each will be asked to answer questionnaires about their sexual and mental health.
The women who have opted not to undergo surgery will be monitored in the same way. So far, about 60 women have enrolled in the study.
Scientists say the research is important because they need to understand what risks these preventive surgeries and the premature loss of hormones have on developing osteoporosis or heart problems later in life.
“Women who undergo these surgeries to prevent cancer may be taking on risks … that could lead to perhaps a premature death from these non-cancer-related reasons,” said Dr. Vanessa Jacoby, UCSF obstetrician and gynecologist and principal investigator of the study.
They also want to understand whether premature menopause from surgery and its side effects differ from those experienced by women who naturally experience early menopause.
“We know that by telling them to do these surgeries, we save lives,” said Dr. Mindy Goldman, UCSF gynecologist and co-investigator of the study. “What we don’t know is how these surgeries affect other health outcomes.”
Please click on the link below to read the piece in its entirety.
I’ve always said there are implications to removing such things as body parts, especially precious parts such as ovaries. We may be preventing cancer on one hand but are possibly subjecting ourselves to a host of other health issues. Looking forward to the results of this study. Perhaps the results of this study will be the impetus for better ovarian cancer screening measures, who knows?
Thanksgiving is this week in the States. I hope you have much to be grateful for … I know I sure do. And don’t forget to discuss your family medical history at dinner.
Click here for more information and help with this: http://www.ihavelynchsyndrome.com/family-medical-history/
Infinite love and gratitude out to my family and friends.
I don’t know what I’d do without you.