The #gyncsm community was pleased to have the #ayacsm community join us for our chat on The Needs of Young Adult Gyn Cancer Patients. We had twenty-one participants. You may find a link to the complete transcript here and the analytics here (via Symplur).
Note that AYA patients generally fall between 15 and 40 years of age.
Here are highlights of the participant responses to the topic questions:
T1: Do gyn cancer symptoms present differently in the Adolescent/Young Adult (AYA) population than they do in the adult/older adult population?
- Similar to adults : A study done in Iran 15-35 years old in #ovca abdominal or lower back pain 52%, unusual bloating, fullness and pressure in the abdomen 37%, gastro-intestinal problems 36% physio-pedia.com/images/b/b6/Ea…
- The average age for ovarian cancer is over 50/60 but plenty of younger women get it and even children get some types. Any bleeding after menopause is a symptom that needs to get checked out for gyn cancers - so that trigger isn't there in those pre-menopause.
- The gynecologic cancer symptoms (see table) can be easy to write off as other things, so I think both young women and doctors aren't thinking "cancer" when these symptoms arise. The whole "too young for cancer" thinking needs to go. #gyncsm #ayacsm
T2: What are some unique aspects of being diagnosed with a gyn cancer ( or any cancer) as a young adult?
- For me, fertility issues weren't addressed/taken seriously, and as a result, I was never able to have kids. It didn't have to be that way if any of my doctors over the years had remembered that I was young.
- We have unique needs like fertility, family planning, dating, sexual health, college/education, and long term side effects.
- I would think that #fertility would be a big issue
- For me it was feeling like I didn't really fit in. The younger women with ovarian cancer typically had a different type than me. Most of the women with high grade serous are 20 years older than me.
- Isolation is HUGE for AYA’s! I have experienced it myself. It’s difficult when you don’t see your peers in the waiting room or support groups.
- Young women have unique roles that do not mesh well with cancer treatment. Work, life, childcare. Women are used to being the caregivers in their family and having cancer is a role reversal that is very difficult.
T3: How soon should AYA patients, or in some cases their parents, initiate a conversation with their oncologists about fertility?
- Fertility is a critical issue for #AYA pts with #gynecologiccancer no matter where the woman is in her journey- it should be discussed early and plans made!
- Right away! Elicit the care of an #oncofertility specialist so you can make plans and protect and preserve your fertility if possible
- Fertility should be discussed at diagnosis with anyone diagnosed with a gynecologic malignancy during their reproductive years. Nearly all treatment disrupt fertility.
- I am working towards a world where it is brought up by the care team at the very *first appointment*, large cancer center, or a county hospital.
- T3 &4 #gyncsm #ayacsm need to address also fears/myths/biases of providers, patients, & caregivers have that if we focus or address #sexaftercancer #Menopause #oncofertiliy we are not being “aggressive” about cancer treatment ; need to lay it all out good&bad early & openly.
T4: In your experience, do providers discuss and provide resources related to surgical menopause?
- T4 well it didn’t happen for me. Surprise!
- Definitely have to do better. People should get the whole story from their PROVIDERS. Good/Bad. This shouldn’t be found out afterwards or from Dr Google or from social media after the fact
- T4: I feel like this too often has been an "oh, by the way..." part of treatment planning. Maybe because if affects everyone so differently that it is hard to set expectations? Addressing surgical menopause is an area for improvement.
- Nearly all treatments for gynecologic cancer (or pre-malignancies) have the potential to initiate menopause. This has to part of the conversation with younger patients at diagnosis.
- I was told that a certain treatment would impact when I could get pregnant, but was never told the maintenance treatment would cause infertility. Not the same, I know...
- My regular ob/gyn brought it up before my gyn onc did. And I was the one intiating these discussions with my gyn onc. This is an area that I feel was definitely lacking. I felt like I needed to be guided on what it does to your body over time to go into menopause before you are supposed to. I have had to teach myself.
- Treatment for menopausal symptoms is underprescribed - estrogen or other therapies may be safe. Ask your care team for your options.
- T4 Not nearly often enough, from what our @CancerHopeNet clients tell us. Orgs like @ElephantsTea are doing good work to raise awareness and reduce reluctance to discuss openly.
- T4 Some great resources for menopause @WomanLab_ @stacylindau @drmonicaxmas
T5: Are special support programs in place to help AYA? What about support from other AYA patients specifically?
- T5: There's @FirstDescents for AYAs of all types of cancers.
- T5 @StupidCancer also offers programs and information stupidcancer.org
- I think peer support is really important and is another thing that healthcare should be letting patients know about and connecting them to resources. @StupidCancer @ElephantsTea @TheSamfund @YSCBuzz and others are out there
- T5 #GYNCSM I have created my own support network of younger ovarian cancer survivors.
- The Ulman foundation provides support for AYA cancer patients. At some cancer centers these resources are kept separate from gyn patients but should be available to any young adult with cancer. @ulmanfoundation #gyncsm ulmanfoundation.org/healthcare-pro…
- T5 this @livestrong Cancer Support article is useful. livestrong.org/we-can-help/ju… #gyncsm
- T5 #gyncsm Most big cancer hospitals have Patient 2 Patient Peer support where you can be matched with a survivor volunteer of the same-ish age/diagnosis.
T6: What roadblocks exist and what advice would you give to AYA regarding sharing their diagnosis with others - when looking for higher education, employment, dating, etc?
- Ask for help! We will help you find resources.
- T6: In my opinion: getting AYA as a community and group recognized by the entire oncology community. I think that’s the biggest step to getting AYA’s resources no matter where they are.
- Don't be afraid to ask - especially the "older" survivors. I've found many were around my age at the time of diagnosis and they've been there, done that, SURVIVED that, *and* have the t-shirt.
- For career and/or legal related items, @CancerAndCareer and @TriageCancer are good resources.
- Orgs like @CancerHopeNet can provide matches based on age/dx/circumstances as well.
#gyncsm will be “off” in January. We look forward to chatting again on Wed, Feb 10, 2021 at 8pmET when we’ll discuss “Communication with your health care team and Asking for Supportive Care”. All welcome.
Please note our new time to meet in 2021.
Wishing the #gyncsm community a very Happy Holiday and a safe, healthy and Happy New Year!
See you in 2021!
Dee
Additional Resources
https://www.cancer.gov/types/aya via @theNCIhttps://www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/cancer-support-young-adults via @CancerDotNet
Livestrong
Teenage Cancer Trust
Ovarian Cancer in Young Women
Ovarian Cancer Among Adolescents and Young Adults
Quality of life, lifestyle behavior and employment experience: A comparison between young and midlife survivors of gynecology early stage cancers
Cancer Related Distress in Young Adults Compared to Middle-Aged and Senior Adults
