August 11, 2021 Cancer Myths

This month we came together to discuss Cancer Myths. Twenty-six participants joined us for this important discussion. You may find analytics here and a transcript here. 

Here is a sample of the responses to our topic questions. 

T1: For you, what makes something a cancer myth? Is it strictly false information or is it something more?

• I see the term "cancer myth" as a widely held belief about cancer. It could be true, false, misleading or anywhere along the spectrum. For me, it is a vague idea that I haven't really looked into the facts of
• I think of it as misinformation that for whatever reason has persisted through time.
• Sometimes people make generalizations ('cancer myths') about cancer, cancer treatments or cancer outcomes - but every cancer is different and every patient has an individual experience.
• I think of cancer myths as outdated information or false beliefs that people have regarding cancer.
• It may also be an assumption about the disease, or its treatments, that are taken for granted based up conventional wisdom, rather than evidence. When passed down by attendings to trainees, we called it #oncolore in my residency

T2: What are some cancer myths that you grew up with? What are some you have encountered as you've been impacted by cancer or worked with cancer patients? (re: causes/what happens during treatment/about emerging treatments/other)

• Thinking back on my dad's cancer, I remember people talking about this idea that once you have surgery and expose it to air, you've allowed the cancer to spread and the end comes more quickly
• People thinking there is a cure for cancer and it’s being hidden from us, sigh 😣🙄. Cancer isn’t one disease. People don’t realize it’s many diseases.
• “Cancer is a death sentence”, “Sugar fuels cancer”, “You are too young for cancer”, to name a few.
• I think “cancer = death sentence” is a belief/response that can be important to unpack and surround w/the individual facts at hand. Some cancers do have little progress - others certainly not as much as we would like - but there are ways to provide hope along w/info
• A cancer myth I still occasionally hear is "you can only inherit female cancer risks from mom" ... We all inherit DNA from both mom and dad, hereditary cancer risks included! Both sides of family health history are important #gyncsm #FamilyHealthHistory #GeneticsMyths
• Growing up - The myth that only old people got cancer. Most recently - The myth that my HPV cancer was directly my fault. #gyncsm

T3: What are some cancer myths that come up around nutrition/diet? Why do you think there is so much conflicting information in this area?

• the top myth to me is - People who have cancer shouldn't eat sugar, since sugar makes cancer to grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. Giving more sugar to cancer cells doesn't make them grow faster.
• And artificial sugars too. So no sweets for anyone lol. #gyncsm
• I think people want to believe that you have some control over whether you get cancer so thinking that if you eat healthy, limit sugar, and exercise, you will be safe which is not always true
• Agree - The risk of focusing on areas we can "control" is the inevitable opposite, that when something out of our control happens, there is shame/blame... Feels similar to fad diets and other trends that seem to just make people feel bad about their bodies

T4: Are there cancer myths specific to gynecologic cancers? Is there information you learned about a gyn cancer that you now know is wrong?

• Maybe not a myth, but there is a lack of basic female anatomy knowledge and also many do think the pap covers “everything down there” vs mainly cervical cancer.
• In the #sarcoma world, some women assume a PAP smear will catch their cancer. Not necessarily.
• There are absolutely myths to GYN cancers. One is that cervical cancer is the “easy” cancer, that it is just bad cells from a Pap test when in reality it is much, much more involved.
• that the Gardasil vaccine will cause fertility issues or other catastrophic problems.

T5: What are some tips for handling cancer myths and responding (or not) when you encounter them - both in-person and online?

• Tell people to fact check and look for information that is factual and not hearsay. As frustrating as it is at times, some people just can’t hear you.
• I try to educate in a calm manner to dispel the belief. Can be quite difficult with some people though. It’s important to remember you may not change their mind about some things and to stay composed
• Very situational - have to adapt to the person and setting. First step I find helpful is active listening and clarifying where the perspective/myth comes from.
• will ask the person to share the research that backs their statement. Then I share a reliable source or journal article that dispels the myth.
• I often give people studies or quote experts. But I try to be diplomatic, unless I think the person is making money or hurting people with myths.
•  Dispelling myths can take a lot of time and energy. And it is okay to not always be up for that. When we can interact one on one and ask questions IF they are open to a discussion that is where to start.
• Meet people where they’re at - sometimes that’s really hard. Sometimes they are not taught what we already know. Clarify and ask questions to understand. Have a conversation. Share your story and some reliable resources for them to check out.
• There is a ton of attention and research in health communication and combatting misinformation with ~everything~ going on...I look to experts in that space for ideas and approaches to build trust and communicate evidence clearly
• I get an alert from Pubmed on new research for #leiomyosarcoma, including gyn LMS. I read experts online & attend #sarcoma conferences when I can afford them. 

T6: What are your go-to sources for reliable information about cancer? For gynecologic cancers specifically?

• Resource | @theNCI is an important source of information and has this article addressing common cancer myths: https://www.cancer.gov/about-cancer/causes-prevention/risk/myths
• Resource | @cancerdotnet is doctor-approved cancer information from @ASCO, designed for patients  
• Resource | National Comprehensive Cancer Network ( @NCCN ) has patient versions of screening and treatment guidelines for many specific cancers
• For GYN Cancer, see the #gyncsm blog Resources page http://gyncsm.blogspot.com/p/resources_9.html and a good starting place is the Foundation for Women’s Cancer https://www.foundationforwomenscancer.org/
• @ocrahope (OCRA) 
• @MDAndersonNews  (MD Anderson)
• @sloan_kettering (Memorial Sloan Kettering Cancer Center) 
• @SGO_org  (SGO)
• @GYNCancer (Foundation for Womens Cancer)
• @IamCervivor ( I Am Cervivor) 
• Peer support - in person and online can be VITAL to fill in information gaps BUT you have to be careful and use these other sources and your doctor to verify information. I steer to groups like @smart_patients which have clear moderation vs. [unmoderated] FB groups.

We look forward to you joining us at the next #gyncsm chat on Wednesday, September 8, 2021 at 8pm ET when we’ll discuss Genetic Testing and Gyn Cancers. We’ll also be asking our participants to fill out a survey to help us improve the #gyncsm community. 

See you in September for Gyn Cancer Awareness Month! 

Dee and Christina

 

Cancer Myths #gyncsm Chat August 11, 2021

Patients and caregivers may hear from family and friends or see advice and information both online and in print about what causes cancer, cancer treatments and risk reduction. Some of that advice is good but some is inaccurate and others are false - yet the information continues to spread. We invite you to join us on Wednesday, August 11, 2021 at 8pm ET (7 CT, 5 PT) as the #gyncsm community comes together to discuss Cancer Myths and shed some light on where you can go to find reliable and accurate information.

We'll use the following Topic Questions (T#:) to guide our discussion:

T1: For you, what makes something a cancer myth? Is it strictly false information or is it something more?

T2: What are some cancer myths that you grew up with? What are some you have encountered as you've been impacted by cancer or worked with cancer patients? (re: causes/what happens during treatment/about emerging treatments/other)

T3: What are some cancer myths that come up around nutrition/diet? Why do you think there is so much conflicting information in this area?

T4: Are there cancer myths specific to gynecologic cancers? Is there information you learned about a gyn cancer that you now know is wrong?

T5: What are some tips for handling cancer myths and responding (or not) when you encounter them - both in-person and online?

T6: What are your go-to sources for reliable information about cancer? For gynecologic cancers specifically?

 

In preparation for our chat feel free to read this article from the Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714  . 

We look forward to seeing you on Wednesday, August 11th. 

Dee and Christina

Jan 15, 2020 - Goals of Care Throughout the Cancer Experience

As we start a New Year, many people make resolutions or aspirations. We thought it the perfect time to chat about Goals of Care Throughout the Cancer Experience. We had 18 participants join us to discuss goals from initial diagnosis, through treatment and after treatment. While we will provide some sample tweets posted during the chat in response to our topic questions, you may find the complete transcript here and the analytics here. 

T1: At diagnosis, what are some of the goals for care? Patients - What were your main goals?

• A1: I think the main goals should be 1. Clear understanding of diagnosis. 2. Clear understanding of treatment plan. 3. A comfortable rapport with the care team where all concerns, questions, and side effects can be openly discussed now and later.
• In addition to learning everything I could - Of course my goal was a cure - for forever . But my short term goal was making to my niece’s wedding the following May.
• T1. I didn’t understand the difference between remission and cure so had some unrealistic expectations
• I planned to get cured of Stage 4 disease and get back to normal life!

T2: Patients - Is a specific discussion of "goals of care" something you had with your doctor? Did they help you define your goals? 

Providers - Is this a discussion that you have with your patients and, if so, how often?

• T2: My gyn doc who tested me pretty much referred me along to other providers. My breast surgeon and I specifically discussed goals, which I appreciated. But I think I should spend more time thinking and actually write some things down. For myself and clarity in appts
• A2: I started treatment during summer, so my oncologist asked me about my summer and vacation plans. I appreciated this! My main goal was being well enough for my brother’s birthday, a month and a half after my first surgery.
• T2: I was in such shock at diagnosis (was told a likely cyst) that it was cancer. That was post-op day with nerve complications. I wasn’t prepared for extent/length of surgery. It felt like I was put on a treatment treadmill I couldn’t slow down.
• T2: An actual written plan of care done together would be great. There’s a big learning curve regarding disease, treatment, maintenance & clinical trials. It’s overwhelming for a while.
• As a provider, I think this is critically important to discuss as early as possible! Incorporating shared decision making with a patient, her provider and the family can help set realistic (and hopeful) expectations.

T3: When considering a treatment or clinical trial do you have a discussion about the research results or guideline recommendations? Do you try to match these to your/the patient's specific goals/needs?

• A3: This is obviously a health care provider question, but I as a patient was sure to make sure my voice was heard for my treatment preferences. I also regularly ask about clinical trials and are happy to do them if is a good fit for me.
• Treatment preferences can be important to speak up about and be sure that the "standard of care" or whatever is being offered you fits with your goals/daily life and preferences
• I would encourage every patient to ask her provider at every treatment decision making time point if she would be eligible for a trial—often this is how we can offer exciting, new therapies (sometimes in addition to the standard of care)
• A3 Initial DX I researched the trial I was offered and also talked to my PCP about it. When I recurred I asked for all my options then I took a month to research what option I wanted to do. I was offered a clinical trial but chose surgery then chemo. 
• T3: #gyncsm I was interested in clinical trials, alternative/integrative approaches, things such as fasting during chemo & nutrition but those were not available (as would have been my plan). Made most of drug trials available & clinical team explained process beautifully.
• Many gyn cancers do have treatment guidelines available from @NCCN Patients can ask if their doctor is following the guidelines and have a discussion about why a variation for your case. So much is put on patients when diagnosed
• @ASCO has clinical practice guidelines too that can be reviewed 

T4: What are Progression Free Survival (PFS) and Overall Survival (OS)? How do these endpoints line up with individual treatment goals? with clinical trial goals?

• Clinical trials have end points - Progression free survival or overall survival. Some trial results have better PFS but may not offer any longer overall survival
• T4. Aaah! One of my fave topics! There is much confusion in the PARP community about OS vs PFS. Many patients want PARPs because they think they’ll live longer.
• T4: Here's the best brief overview of the concepts of progression free survival vs. overall survival: https://www.focr.org/clinical-trial-endpoints Any of our healthcare folks have a boiled down couple sentences? So much terminology hurdles in cancer.
• T4: From patient perspective, progression-free survival is jargon & focus on it rather than cure/survival alienating, academic or for benefit of battling drug companies. I’d always thought cure was goal of oncologists & research. Reality has been sobering/depressing.
• @theNCI does have a Cancer Terms widget/dictionary that can be helpful https://www.cancer.gov/publications/dictionaries/cancer-terms
• Yes. It’s not always clear what prolongs length vs. quality of life, what is done with intent to cure rather than delay recurrence, & benefits & risks of them if BRCA negative.
• T4 providers use endpoints like progression-free survival and overall survival to understand the impact of particular treatment on the cancer... but other endpoints like patient reported outcomes (PROs), time without symptoms, quality of life may be as (or more) valuable

T5: How do goals of care change over time? Are they reassessed upon recurrence? How can readjusting goals impact treatment decisions and also daily living?

• A5: I really think this comes down to having a good relationship with care team. A recent example: At my last appointment in December I requested my cancer follow ups to go to yearly instead of bi-yearly. I explained why and they allowed it!
• 5. I realized after end of frontline that I might recur and have to let go of my”cure” fantasy. When I did recur, my goal was to get on a PARP at end of 2d line treatment and have me a good long remission.
• T5: Adjusting goals is part of the process but seems bittersweet - freeing, maybe clarifying, but also tough. As mentioned, having that good relationship with your doctor where goals are part of discussions can help set clear expectations and ease readjustments...
• Side effects impacted my treatment on recurrence so my goals had to change. As we learn more about mutations that could change our goals and treatment too.
• A5 Right now my goal of care is to educate as many women as I can about EC and in the process heal from the scars it has left behind. I’m finding strength there and know now that You fear what you don’t understand

T6: What are some things to consider when setting patient goals for care and in communication between providers and patients about goals of care? What are your tips?

• Care team, be honest! That is what helped me map out some of my future after my diagnosis. They didn’t tell me “you take the thyroid out and you’re done!” A line often repeated by those who don’t understand #thyroidcancer
• It doesn’t hurt to seek outside help. There are lots of resources if you need them. Therapy, a pastor, support groups. Getting help is courageous.
• Being sure we have access to the best and latest information on treatment for our cancer , including clinical trials is crucial in helping set goals of care.
• @abrewi3010, in addition to advocating for goal discussions at every care interaction, suggests that patients share about themselves as a person and get to know their provider as a person. Even a couple minutes can lay foundation for working as team
• A6 Always consider a patient’s level of support. Emotional, Physical and Financial. It has a direct relationship with compliance.
• Great question. I think matching the care to the patient rather than the patient to the care. Being partners & collaborators & open to new ideas, possibilities & approaches.

A recent study involving survivor/advocate @Stigetta "Ovarian cancer survivors' acceptance of treatment side effects evolves as goals of care change over the cancer continuum" was shared https://www.gynecologiconcology-online.net/article/S0090-8258(17)30885-5/abstract

We ended our chat, as we always do, asking for participants to share what was learned during the chat in what we call the TIL - Today I Learned. Here was one response:

TIL that goals should be discussed more at every appointment. Both care goals (exercise, diet, sticking to medication routine) and patient’s goals (school, marriage, new job, birthdays.) Once again: Communication, communication, communication!

Please join us for our next chat on February 12, 2020 at 9pmET when we will be discussing Cancer Pre-hab.

Dee

#gyncsm Co-founder

#CANCERSM Chat - Basics of Biomarker Testing 7/11/19

Please join us on Thursday, July 11, 2019 at 8:00pm for a joint Cancer hashtag community chat featuring Pathologist Dr. Timothy Craig Allen (@TimAllenMDJD).

Until just a few years ago, chemotherapy was often the only option for some cancer patients. In just a few short years, molecular therapies and immunotherapies have become commonplace as treatments for cancer patients. But determining whether a particular cancer patient is a candidate for these new, often very expensive, molecular and immunotherapies requires molecular biomarker testing. For many cancer patients and their families, the role of molecular biomarker testing in their diagnosis is an unfamiliar and confusing. How is testing performed? How is the test result analyzed? What is involved in getting helpful answers from biomarker testing? Does liquid biopsy have a role?

Pathologists are specialized doctors responsible for answering these questions. They identify any cancer cells in the biopsied specimen, and guide the patient’s biomarker testing. Unfortunately, pathologists do not typically speak with patients, so patients and families–and even some doctors–often do not have a clear understanding of the role of molecular biomarker testing in the diagnosis and treatment of cancers. Learning more about the basics of biomarker testing can help patients and families cut through the hype about biomarker testing, understand the patient’s specific disease more thoroughly, and learn what biomarker test results mean to the patient’s cancer treatment.

Please join moderator and pathologist Dr. Timothy Craig Allen (@TimAllenMDJD) at 8 PM Eastern Time on Thursday, July 11, 2019, for a discussion about the basics of biomarker testing, a subject potentially affecting all cancer patients and doctors.

We will cover the following topics:

T1: What is a biomarker and how is it identified?
T2: What is biomarker testing and what is it used for?
T3: What treatment options can be identified through biomarker testing?
T4: What biomarker tests should be run for which types of cancers? What is a liquid biopsy and when is useful?
T5: Can and should patients pursue biomarker testing for treatment options if their doctor does not offer it?

Please remember to include #cancersm in ALL your tweets so the other chat participants can see them.

If you need a refresher, read the #LCSM primer on participating in a Twitter chat (the hashtag in your tweets will be #cancersm, not #LCSM). Note that some tweetchat apps (like tchat.io) will not display tweets longer than 140 characters. Hope you’ll join us!


Dee and Christina

Co-founders #gyncsm

"What is OK During Treatment" August 8, 2018 Chat

Tonight we had the chance to learn "What is OK during treatment?". We covered what is OK in terms of exercise, food, sexual intimacy and vitamins. We also allowed our participants to ask their own "Is it OK to..." question at the end of the chat. It was a pleasure for us to have Sangeeta Agarawal RN, Ms, CAS (@sanHelpsy), founder of Helpsy join us as a guest for this evening's chat and provide valuable information on a number of topics. 

You may find our transcript here and analytics here. 

We are happy to share a few highlights from tonight's chat below. Resources may be found at the bottom of this post. 


T1: Is it OK to… take supplements and vitamins during chemotherapy? How about during radiation therapy?

• It is important to let your MD know any vitamins/supplements you are taking to ensure that they will not counteract your chemo

• For example, antioxidants can counteract the effect of chemotherapy by clearing out the free radicals that damage the cancer

• We recommend a simple multivitamin during treatment for cancer

• You can find more information about herb supplements on NCCIH's HerbList App and Memorial Sloan Kettering's About Herbs app

• Avoid taking high doses of antioxidant supplements during chemotherapy and radiation treatments as they may interfere with treatment

T2: Is it OK to… exercise during treatment? Are there specific exercises that are good to do after abdominal surgery?

• We absolutely encourage exercise during treatment for cancer - it can help reduce stress and manage symptoms such as fatigue

• Start with light exercises - slow with yoga, walking or stretching, work your way up to cycling, swimming, aerobic exercise once you feel ready. Talk to your oncologist and care team to design the right fitness routine for you

• After abdominal surgery, it's important to avoid anything that strains your core/abdomen, stick w walking & low impact exercise

• Supervised resistance training is good during and after treatment as it helps maintain muscle and bone mass

• Try exercises like finger rolls, finger taps to help with neuropathy in your hands and fingers; exercises like calf raises, ankle circles, standing heel to toe for neuropathy in feet

• There are even tutorials for seated yoga - you can get in your movement in many different ways.

• Maintain a diary to record exercise sessions. Plan exercise for good and bad days, days when you experience intense symptoms

• And exercise (appropriate for your current level of health) is excellent for your mental health, too

• Exercise reduces fatigue at 40-50%, provides muscle strength, flexibility & general conditioning, control weight. Avoid swimming if on R/T chlorine irritate radiated skin as per reading

T3: Is it OK to… eat raw fruits and vegetables during treatment?

• Try to include colorful fruits and vegetables, at least 2.5 cups every day, be sure to wash them thoroughly

• Include citrus fruits like grapefruits and oranges and deep yellow and dark green vegetables

• very imp to wash them thoroughly before eating. Check any warnings about breakout of disease

• Vegetable sprouts such as mung bean, alfalfa, broccoli and radish should not be eaten raw, only consume pasteurized juices

• Do not consume from outside - fresh salsa or salad dressings found in refrigerated sections of the grocery store; shelf-stable salsa and dressings are okay

• This literature review found no need for a neutropenic diet: https://t.co/FBixFWj5Nt

• In case of loss of appetite or desire to eat, talk to your health care team about nutrition consult so they can suggest recommendations to help improve taste and appetite

• No need to avoid raw food completely! Avoid outside raw food. Avoid raw sushi

• I also tell patients that beware of coffee and soda. You don't get proper hydration from those products.

T3 cont'd - What about soy and soy products?

• Soy products contain phytoestrogens and not estrogen, soy contains essential amino acids, magnesium, potassium, fiber, and other vitamins. Try picking organic sources of soy

• Soy dietary supplements may not be a healthy choice, consult your physician 

• No harm in eating soy. Just ensure your body can digest it. Eat organic soy products.

T4: Is it OK to… have sexual relations while in treatment?

• No reason to avoid sexual relations, it is not sexually transmitted or contagious and won't cause the cancer to return

• You can absolutely have sex during treatment - there is no risk as long as you have the energy for it!

• If you are in the mood or have energy for it! Go for it! Sex releases happy chemicals and builds closer bond with partner. 

• Fatigue, pain, and discomfort after surgery could interfere with sexual relations, use vaginal lubricants to alleviate the pain

• Radiation may cause vaginal swelling and bladder inflammation, sexual relations may be comfortable after a short healing period of about 2-4 weeks 

• Cuddling, kissing and other forms of intimacy feel good too! :)

• It's very important to bring up this topic and discuss any questions. Many times providers and patients both avoid it, but it's an important part of our life that needs discussion and clarity 

T5: We’ll now open the floor to allow our participants to ask other “Is it OK to...” questions. What haven't covered? 

Question: How about getting your flu shot? I think it is ok with chemo and radiation but they aren't sure about getting it with immunotherapy and other new kinds of treatment....

• Usually it's given, but based on some treatments like immunotherapy - it may be held for a bit. Important to check with oncologist 

Question: Is it ok to be around kids or adults ( shingles ) who have had vaccines?

• Most are safe, but when WBC is very low, better to avoid contact during days of nadir/lowest white blood cell count

Question: For nutrition and exercise... any different recommendations for immunotherapy vs. more standard treatments? Or is there not much studies on that yet?

• so far, our recommendations for nutrition and exercise don't change for immunotherapy - we are still learning though

Thank you everyone who took part in our discussion. Remember if you are a patient or caregiver you may continue this discussion on the Smart Patients Platform ( https://www.smartpatients.com/gyncsm ). 

We hope you will join us for the next #gyncsm chat: Wednesday, September 12, 2018 where in addition to chatting about on We need support - Where do we find it?.  We will also be celebrating the #gyncsm Community's 5th Anniversary. 

See you in September. 

Dee
#gyncsm co-founder


RESOURCES

Taking vitamins/supplements:

https://blog.dana-farber.org/insight/2014/02/should-i-take-vitamins-and-supplements-during-cancer-treatment/

Supplement Showdown : A Look at Vitamins and the Fight Against Cancer
https://www.curetoday.com/articles/supplement-showdown-a-look-at-vitamins-and-the-fight-against-cancer-

Dietary Supplements During Cancer Treatment: Yes or No?
https://health.usnews.com/health-news/patient-advice/articles/2015/07/01/dietary-supplements-during-cancer-treatment-yes-or-no

ACS @AmericanCancer website
https://www.cancer.org/treatment/treatments-and-side-effects/complementary-and-alternative-medicine/dietary-supplements.htm

Exercise:

http://ovarian.org/component/content/article/33-latest-nocc-updates/362-tips-for-exercising-during-and-after-cancer-treatment

https://www.roswellpark.org/media/news/exercise-may-reduce-risk-cervical-cancer

http://exerciseismedicine.com.au/wp-content/uploads/2016/11/2014-Gynaecological-Cancer-FULL.pdf

pelvic exercises via @PelvicGuru1
 https://pelvicguru.com/2013/12/28/what-is-pelvic-physical-therapy-and-why-doesnt-everyone-know-about-it/

Eating raw fruits and vegetables:

https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/life-style-changes-that-make-a-difference.pdf

http://www.aicr.org/new-american-plate/cancer-preventive-diet-model-plate.html

https://medlineplus.gov/ency/patientinstructions/000061.htm

Savor Health blog
http://savorhealth.com/blog/

Health Care System Eliminates Neutropenic Diet in Patients with Cancer with no Rise in Infection
https://www.curetoday.com/articles/health-system-eliminates-neutropenic-diet-in-patients-with-cancer-with-no-rise-in-infections

Eating soy: 

https://www.oncologynutrition.org/erfc/hot-topics/soy-and-hormone-related-cancers/

Tamar Rothenberg, RDN Is Soy Helpful or Harmful for Cancer Patients
https://www.tamarrothenbergrd.com/single-post/2018/01/10/Is-soy-helpful-or-harmful-for-cancer-survivors

@fredhutch Soy Is it Safe for Cancer Survivors
https://www.fredhutch.org/en/treatment/survivorship/survival-strategies/soy-safe-for-cancer-survivors.html

Having sexual relations during treatment:

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer/problems.html

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer/faqs.html

Guide to Sexuality During & After Cancer Treatment
https://www.oncolink.org/support/sexuality-fertility/sexuality/women-s-guide-to-sexuality-during-after-cancer-treatment

Foundation For Womens Cancer
http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Mindy Schiffman, PhD. Sexuality and Intimacy after Cancer in this video
https://t.co/8bw9Lr79Zc

Be around children who are recently vaccinated: 

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/infections/vaccination-during-cancer-treatment.html

Eating cake and sugary foods:

https://www.oncologynutrition.org/erfc/healthy-nutrition-now/sugar-and-cancer/

Miscellaneous:
The Chemotherapy Survival Guide Authors Judith McKay, RN, OCN and Tamera Schachen, RN, OCN, MSN

August 8, 2018 What is OK during Treatment?

Over the past few years #gyncsm has heard questions from women about what they should or should not do during treatment. Such as, is it OK to...

• exercise? 
• eat raw fruits and vegetables? 
• have sexual relations during treatment? 
• take vitamins? 
• eat soy or not? 
• take supplements during chemotherapy? 
• be around children who have recently been vaccinated? 
• eat cake and other sugary food?

Even as treatments options are expanding for women diagnosed with a gynecologic cancer - from chemotherapy and radiation therapy to targeted therapies and immunotherapies - women still are looking for guidance in these areas.

Join us as this month as we welcome Sangeeta Agarawal RN, Ms, CAS (@sanHelpsy), founder of Helpsy "an integrative medicine platform for improving symptoms and health outcomes", as our guest. Sangeeta has long been involved with the Stanford MedicineX conferences and her mission is to empower people with the best quality of life by bringing together the best of eastern and western medicine and disseminating it using the power of technology. Sangeeta hosted a panel discussion in 2016 with the Oncology Nursing Society: Complementary & Alternative Medicine – A 360-degree View.

During the chat we'll be sharing information such as this National Comprehensive Cancer Network article on Exercise During Cancer Treatment and Memorial Sloan Kettering Cancer Center's article on Eating Well During and After Your Treatment.

We look forward to seeing you on Wednesday, August 8, 2018 at 9pmET (8pmCT, 6pmPT).

Dee
#gycnsm Co-Founder

Rare Gyn Cancer Chat - February 10, 2016

February 29th is Rare Disease Day. In the past, we have tweeted about Rare Disease Day (#RareDiseaseDay) as well as shared information about the day on our blog (here and here). A disease is rare in the U.S. if the "disease or disorder ... affects fewer than 200,000 Americans at any given time." (http://www.rarediseaseday.org/)

The mission of #gyncsm is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. On February 10, 2016 we will be discussing Vulvar, Vaginal and Fallopian Tube cancers. 

An estimated 5,000 women in the U.S. will be diagnosed with Vulvar cancer in 2016. In 2015, it was estimated that 4,070 women would be diagnosed with Vaginal cancer. Around 300 to 400 women are diagnosed annually in the U.S. with Fallopian Tube cancer.  

Join us as we discuss these diseases. The topic questions are:
T1: What are some of the key things to know about vulvar cancer - risks, symptoms, treatments, etc.?

T2: What are some of the key things to know about vaginal cancer - risks, symptoms, treatments, etc.?

T3: What are some of the key things to know about fallopian tube cancer - risks, symptoms, treatments, etc.?

T4: There is a suspected relationship between the fallopian tubes and ovarian cancer. What is the latest research showing?

T5: How does the treatment of these cancers differ from that of other GYN cancers (ovarian/cervical/uterine)?

T6: Since these cancers are so rare, where can those impacted by vulvar, vagina, and tubal cancers find information and support? 

To prepare for the chat you may check these resources from Cancer.net:
Vulvar cancer: http://www.cancer.net/cancer-types/vulvar-cancer
Vaginal cancer: http://www.cancer.net/cancer-types/vaginal-cancer/overview
Fallopian Tube cancer: http://www.cancer.net/cancer-types/fallopian-tube-cancer


We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers. We look forward to your participation in this important discussion on February 10th at 9pm ET (8pm CT/ 6pm PT). 


Dee
#gyncsm co-moderator

May Chat : Advances in Personalized Medicine for GYN Cancer

Our October 2013 chat topic was "Genetics and Personalized Medicine". Many new developments and initiatives have occurred since then. During our May 13, 2015 (9pm EST) chat we will provide an update on advances made in personalized medicine and how they impact the care of patients with gynecologic cancers.

In addition to our regular Health Care Moderators, Dr. Scott Richard (@sdr2md) Director of the Division of Gynecologic Oncology at Hahnemann University Hospital and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (former known as Precision Therapeutics; they will be tweeting as @HelomicsCancer) will join us for this important discussion. Helomics™ Corporation is a healthcare company that develops innovative diagnostics for the oncology field. PLEASE NOTE: Helomics' participation in this chat is NOT an endorsement of the company's products or services by the #gyncsm community or our health care moderators.

The discussion questions are:

T1A: What are some misconceptions you've heard about personalized medicine?
T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?
T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?
T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?
T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?
T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

To prepare for our discussion you may read  President Obama's Precision Medicine Initiative Fact Sheet . Additional articles/resources may be found on the CDC's Public Health Genomics page and on the NCI's Precision Medicine and Targeted Therapy page.

We look forward to having you join our discussion or come and "lurk and learn".

Dee
#gyncsm co-founder and co-moderator

March Chat: "No One Ever Told Me..."

We invite all gynecologic cancer survivors, caregivers and health care providers to join us for our March Tweet Chat on Wednesday, March 11th, at 9pm EST ( 8pm CST / 7pm MST / 6pm PST). This month we will ask you to share your thoughts on what you (or your patients) wish you knew about gynecologic cancers, treatment and survivorship. We will also ask you to share tips that helped you through the various parts of your life as a survivor / thriver.

We hope these topic questions will provide food for thought. 

T1A: For patients/survivors/loved ones, share "No one ever told me  ___ ". 
T1B: For our healthcare professionals/advocates, what do patients seem to be most surprised about or even blindsided by? 

T2A: Are there things you wish you knew before your (or your loved one's) treatment (incl. surgery, chemo, radiation)? 

T2B: Healthcare professionals: What are you surprised that patients don't ask about?

T3: What pre and post surgery and/or pre and post chemo tips seem to help the most or you wish someone had told you?

T4: For those who have completed initial treatment, what do you wish people told you about survivorship - physical & mental? What are the on-going care needs and issues that surprised you or you wish you had more information about beforehand?

Remember survivors and caregivers can also join the discussion on Smart Patients - before and after the chat. You can sign up at  https://www.smartpatients.com/gyncsm .

We look forward to having a lively discussion. 

Dee

Co-moderator