Research Study Recruiting Male Young Adult Cancer Survivors

young male cancer survivors fertility study

UC San Diego Moores Cancer Center in collaboration with Oregon State University College of Public Health and Human Sciences is conducting a Fertility and Parenthood After Cancer study.

The purpose of the study is to find out more about young cancer survivors’ reproductive health and concerns about fertility and parenthood now or in the future.  They are currently recruiting male cancer survivors (age 18-35) to complete an online questionnaire about fertility and reproductive concerns after cancer.

The survey is anonymous and eligible participants will receive a $20 gift card after completing the survey.

If you have any questions about the study or recruitment, please contact investigator Jessica Gorman at jessica.gorman@oregonstate.edu or principle investigator T. Mike Hsieh at t7hsieh@ucsd.edu.

You can find the web survey and study information online, here.

 

Go Vote!

go vote

We had another post scheduled for today…and then it occurred to all of us, here at Lacuna Loft, that we should just tell you to GO VOTE!

If you’re in the US today, go and vote.  Vote for healthcare, vote for peace, vote for radical inclusion of all people into our society, just go VOTE!

We’ll be here when you get back 😉

Cancer and Careers Micro-Grant Application Period Is Now Open

cancer and careers micro-grants

Cancer and Careers, a wonderful organization offering career assistance to cancer survivors, has open their micro-grants application period.

From Cancer and Careers:  “People who have been diagnosed with cancer face a number of challenges when trying to manage working through treatment, returning to work or finding a job — even years after treatment. Our Professional Development Micro-Grant program offers cancer patients and survivors financial assistance for professional development opportunities that will enable them to enhance or build new skills.”

To learn more and apply, go here.  The deadline is November 1!

Impact Numbers (July 2015 – June 2016)

lacuna loft impact

Without *you* there is no Lacuna Loft.

Today is all about *you*!  Today we spend thanking *you*!  Below, we share some of the impact numbers on the young adult cancer community that *you* made happen.  Lacuna Loft’s first year as a nonprofit has been amazing…all thanks to *you*!

*You* made Lacuna Loft’s impact possible through your donations, your contributions, and your participation.  *You* are making the lives of young adult cancer survivors and caregivers better, more manageable, and less lonely.  *You* are connecting these young adult survivors and caregivers to one another when they really need someone who understands.  *You* are sharing stories, ending isolation, and forming a community where a community has been deeply needed.  *You* are all of the lively and peppy and bold and courageous and loving adjectives that we share each week.

*You* are a rockstar!  Thank *you*!

lacuna loft impact

Our full annual report will go up on our website soon.  We’ll point you to it as soon as it’s there.  Some changes will also be happening on the site so that *your* impact on the young adult cancer world is always available, front and center, for ALL to see.

*Together* we are making this a better world for young adult cancer survivors and caregivers.  Lacuna Loft Impact is *your* impact.

The “Good” Cancers Aren’t So Good

no good cancer

As some of you may know, September is Thyroid Cancer Awareness Month. However, September is also Childhood cancer, Leukemia, Lymphoma, Prostate, and Ovarian Cancer Awareness Month. That’s a lot of awareness for just four short weeks! But a couple of the cancers we celebrate and advocate for this month are often called the “best” cancer to get. Thyroid cancer and prostate cancer are both sometimes called “good” cancers, due to the fact that they are considered easily treatable when caught at early stages and are often thought to be slow-growing. Though it is true that thyroid cancer and prostate cancer both have very high five-year survival rates (98% and 99%, respectively), there isn’t anything “good” about them.

Even with such low mortality rates, thyroid cancer and prostate cancer are fairly common cancers. The American Cancer Society has estimated over 180,000 new cases of prostate cancer and over 64,000 new cases of thyroid cancer for this year. Prostate cancer, though often thought of as a “good” cancer, it is still the second-leading cause of cancer deaths in men, only preceded by lung cancer.

I have been told by doctors that thyroid cancer “is the best one to get,” yet treatment often includes removal or destruction of the thyroid, which is a very important little gland! Though the surgery can usually be done quickly, recovery takes time for the neck muscles to heal themselves, as they must be cut in order to reach the thyroid. Many people, including myself, often experience permanent voice changes after thyroidectomies, and are completely dependent on synthetic thyroid hormone for the rest of their life. Prostate cancer typically involves very tricky surgery, and even when it is successful, it can still lead to chronic issues such as incontinence or impotence.

Both diseases are usually described as “slow-growing,” but when either of these cancers spread it can lead to many severe issues. Thyroid cancer often spreads first to the lymph nodes, and can metastasize in the lungs. When prostate cancer spreads, it typically affects lymph nodes and the pelvic or hip bones.

Every stage and type of cancer causes harm to the body, and many times the effects of treatment last for years. I don’t see anything “good” about that. Putting an extra label of “good” or “bad” onto this disease creates a completely unnecessary hierarchy on something that doesn’t need to be ranked.  It’s time to remove the phrases “good cancer” and “bad cancer” out of our vocabularies, and focus on finding more effective treatments for all cancers and supporting the patients and survivors.

If you liked this piece, you might also be interested in reading 8 Years of No Good Cancer and The Anti-Bullying Cancer Manifesto

Get Loud

ayacsm

Did you know, once a month there are several tweet chats you can join to stretch your young adult cancer patient and survivor advocate muscles alongside Lacuna Loft?  Whether you’re looking to talk about young adult cancer in general, or want something slightly more focused like metastatic cancer, there are tweet chats and online communities everywhere you turn.  These tweet chats are a great place to chat with other young adult cancer survivors and healthcare professionals.  Lacuna Loft is active in two of them, in particular.  #AYACSM is the adolescent and young adult cancer societal movement and #MAYACC is the metastatic and advanced young adult cancer community.  #AYACSM’s next tweet chat is happening on September 25th @ 9 pm ET while #MAYACC’s next tweet chat is happening on September 13 @ 9 pm ET.

Never joined a tweet chat before?  Here are some logistics!

All you need to join is a twitter account!  Seriously, it is that easy.  Then, a few minutes before the tweet chat is to begin, go to ‘tweetdeck.com’ and log in using your twitter account.  On the left-hand column, there will be a menu toolbar.  In the search window, type in #ayacsm (or another hashtag for the tweet chat you’d like to join) and hit enter.  A new toolbar will appear with an ‘add column’ button at the bottom.  Click that button.  This will allow you to instantaneously see when someone has added a comment, answered/asked a question, or otherwise engaged with that hashtag (which is how you follow along with the tweet chat).  Whenever you’d like to join in the chat, click on the ‘New Tweet’ button on the left-hand toolbar and tweet away!  Always remember to add the hashtag of the tweet chat at the end of each tweet you send.  (In the #ayacsm tweet chat, always add ‘#ayacsm’ to the end of each tweet.)  This will make sure that your tweets are included in the tweet chat!

(You can also use these columns in Tweetdeck to search for any other hashtag you’d like.  Lacuna Loft pays special attention to #yacancer, #yarally, #caregivers, and others.)

We hope to see you in a few weeks at the #AYACSM and the #MAYACC tweet chats!

Like any other tweet chats or hashtags?  Let us know which ones you frequent!

National Study Is Looking For Male Young Adult Cancer Survivors

young men cancer survivors study

Studies that focus on young adult cancer survivors are few and far between.  Today though, we’re announcing one focused on young adult men who have had cancer.  They are asking questions like “What is it like to have cancer as a young man?” and “How has cancer affected your intimate relationships?”

From the study information:

Young men who have had cancer are being asked to share how they feel about their intimate relationships before and after their cancer experience. We would like to talk to young men who live anywhere in Canada, are at least 19 years of age, and were diagnosed with cancer when aged 15-29 years. Both young men with and without partners are invited to participate in the study.”

To participate in the study or for more information, please contact:

Katherine Holloway
Faculty of Nursing, University of New Brunswick (Fredericton)
Telephone: 506-447-3077
Email: cancerresearch@unb.ca
Facebook: facebook.com/YoungMenCancerTreatmentandIntimacy/

Parenting An AYA With Cancer Research Study

parent of a young adult cancer survivor

Are you the parent of an adolescent or young adult cancer survivor, aged 14-39 years?  Just like your young adult cancer survivor child, you have unique challenges and needs.  Learning the right balance between parenting and peer, support and allowing independence is difficult!  Researchers at Hunter College have developed a survey just for you!  Now you can help another parent of a young adult cancer survivor, just like you.

From the research team:

“Researchers at Hunter College have designed a survey to better understand the parents’ unique needs, concerns, and experiences in caring for a young adult child with cancer.  Their hope is that the information parents provide helps in developing programs to support other parents facing similar challenges.  Please share this survey with any parents you know that are currently or have cared for a YA child with cancer.”

To see the survey, go here!

How To Be Your Own Advocate

self-advocacy tips

Many people after cancer or some other illness often say “Be your own advocate.” But what does that entail?

Put simply, being your own advocate is the opposite of being a “passive patient.” A passive patient is one that takes everything their doctor says at face value. It’s one thing to trust your doctor’s judgement, but it’s another to accept everything they say and do blindly. Learning to advocate for yourself not only is a great way to share knowledge with others in a similar situation, but it can lead to a better quality of care from your health providers.

Here’s a few quick tips on being an advocate for yourself:

Do (some) research.

Now, I know what you’re thinking: Everyone always warns not to Google your condition…why are you telling me to do that? While I agree that it’s easy to fall down the search engine rabbithole (I’ve been there), some basic knowledge on how parts of your treatment work will really help in the long run. For example, if your doctor suggests a trial or medication, basic knowledge of how it works and a quick summary of side effects are good things to keep in your back pocket. It’s a scary thing when you have a new symptom come seemingly out of nowhere, but if you’ve done your research on your meds you can quickly figure out if it’s something new or just a side effect.

A word of caution: try to avoid doing research on days when you’re not in the best of moods. That will definitely make your feelings multiply rather than go away. (Trust me, I’ve done this way too many times.)

Be prepared and ask questions

If you’re not sure why you’re being submitted for a test, put on new medication, or anything your doctor is telling you to do, speak up! You have the absolute right to ask your doctor questions, and there’s no such thing as a dumb question when it comes to what’s happening with your body. Ideally, your doctor should let you speak first, ask some questions to get a better understanding of what’s going on, and then use that to come up with a solution, talking you through as much as possible. But we all know that’s a rarity since many doctors see multiple patients each day and may only have minutes to look at your charts. Make the most of your time with your doctor by being prepared for your appointment:

  • Make a list of all the medications you’re on. You’ll usually have to write it down or give it to a nurse before you see the doctor, anyway. Be sure to include the doses for each if possible. And yes, this includes all forms of hormonal birth control! If you have an implant, you definitely need to let your healthcare team know about it.
  • If you’re going to a follow-up appointment, make note of any symptoms you’ve noticed since the last appointment. Also keep in mind if it’s a side effect of a medication, which you would likely know by doing your research!
  • If your doctor starts saying a bunch of words or concepts that you’re having a hard time translating into not-doctor, ask for an explanation. Doctors can sometimes get carried away with jargon and will keep going until you say something or until the appointment is over. Don’t be afraid to admit you don’t know what a word means; It’s important to understand everything your doctor says.
  • Write down a list of any questions you can think of before arriving at your appointment. If you’re prone to forget things (hello, brainfog!), this will help you stay on track rather than just blanking out at the end of your appointment.
  • If you’re on medication that’s checked regularly, ask your doctor what the goal is for you. For example, since I no longer have a thyroid and am completely dependent on synthetic thyroid hormone, my thyroid doctor wants my Thyroid Stimulating Hormone level (TSH) to be as close to 1.00 as possible. With that information, I can make note how I feel when my TSH is close to my target and recognize when something may be off. (Please note this is not typical for everyone that is on thyroid medication, this is my personal target keeping in mind my height, weight, and type of thyroid cancer!)

A couple of good ways to keep track of everything would be a small notebook that’s designated for your appointments or even just a memo in your phone. There are also several symptom tracking apps, most of which are free. Here’s a list of top 100 health apps for Apple and Android. (A lot of apps on these lists are period trackers, which are also good to use if you have periods.)

Share your story and learn from others

One huge part of being an advocate for yourself is also learning to advocate for others. This doesn’t mean you have to be your county’s top Relay For Life team – although if that’s your goal then good for you and good luck! It can mean just finding a community. The best advocacy lessons I’ve learned have all come from other people in the thyroid cancer and young adult cancer communities. Even a quick “so happy for your clean ultrasound!” or “I’m sorry you’re having a rough time right now” from a cancer or chronic illness buddy is enough for my day to get a little better. Once you find a community that works for you, it quickly becomes a place where you can vent and give each other advice based on what you’ve learned from each other.

Advocacy looks different for everyone. For some, it may just be bringing a list of questions to ask your doctor. For others it may be organizing a 5K to raise money for an organization that’s helped them through their illness. It may be a bit daunting looking at someone else’s example of self-advocacy, but everyone starts at different places. If speaking up at your doctor’s visits seems too much for you, start small. Try to ask one or two questions at each appointment at first, then build your way up as you get more confident in doing that.

The main thing about your health is that it’s about you, so it’s in your best interest to make sure you’re not a passive patient. Now get out there and advocate for yourself!

What self-advocacy tips and tricks have you found helpful?

Genetic Counseling Before And After Testing

When I think back to the last 8 years, I cannot believe how far I have come. It has been quite a ride and I would not change a thing. My BRCA2 mutation has given me so many things, some good, some bad — none of which I would change.

My mutation gave me an 87% chance of developing breast cancer and a 40% chance of developing ovarian cancer. These risks provided me with immeasurable fear, uncertainty, and vulnerability. As a result, I underwent surgeries to reduce my cancer risks, which were then followed by complications and many recoveries. Most importantly, my mutation gave me a wake up call.

Life is short and I always knew that I wanted to live it to the fullest so when I got the news that I was positive for a hereditary mutation, I knew that I was going to do everything in my power to keep myself healthy. I never once second guessed my decision to have risk reducing surgeries. I feel fortunate that I had many tools, as well as professionals, at my disposal.

One of the most important people I dealt with from the moment I found out about the BRCA mutation was my certified genetic counselor. Genetic counselors are health professionals with specialized training and experience in the areas of medical genetics and counseling. Genetic counselors work as members of a healthcare team, providing individuals and families with information on the nature, inheritance, and implications of genetic disorders to help them make informed medical and personal decisions.  For more info about genetic counselors, go here!

Genetic counselors wear many hats — all of which are essential. They can be the bearer of good or bad news, and play important roles in decisions you make. First and foremost, they are able to assess your genetic risk to see which genetic tests are appropriate for you. When dealing with general practitioners, many will often order a genetic test for BRCA mutations if they feel it is needed; however, the BRCA mutations are not the only mutations that can put you at a higher risk for cancer. Various organs can be involved for hereditary cancer syndromes. Other cancer concerns aside from breast and ovarian cancer include: colon, pancreatic, prostate, skin, peritoneal, and uterine cancer.

Genetic counselors can provide you with the proper paperwork so that you will have minimal insurance issues. They can also provide you with connections to a social workers and psychologists. Genetic testing can often be a very emotional experience and there is nothing wrong with speaking with someone — in fact I encourage it.

When seeing a genetic counselor, it is a good idea to take family members with you who you think might also be affected by a mutation. They can help map out your family tree and provide documentation that you can share. If you are not able to take a family member with you, a counselor can provide resources and tools to help share the information with family as it is often very difficult to start that type of a conversation.

A family medical history is health information about you and your family. A family medical history includes information about the health and illnesses of your mother, father, siblings, your children, aunts, uncles, cousins, and grandparents. The more information you can provide, the better. If cancer has been in the family, please try and find out the age of onset, along with cause of death. If you notice patterns of medical issues, mention that as well. It can help determine whether there is an increased risk of developing certain conditions.

Aside from a family medical history, here are some other tips that will help. If you can, it’s a great idea to ask relatives if they have ever gone for genetic testing. If you do have the ability to ask, it would be great if they are able to provide a copy of those reports. It is extremely helpful and might even reduce the cost of testing. If a relative cannot join you for the appointment, I would also advise you to bring someone with you to your appointment. That way you have someone who is able to be a second set of ears. If not, you can always record the meeting. It can be overwhelming and sometimes things are forgotten.

Genetic testing is not for everyone however I truly believe that knowledge can be power. Many who undergo genetic testing feel a sense of relief. Knowing whether you are negative or positive can allow you determine a course of action. It can help with a surveillance plan or a prophylactic surgery path. It will also help with screening measures for your family. If you have tested positive for a genetic mutation, there is a 50% chance that each one of your family members may also be at risk.

It is important to remember that genetic testing can save your life if you use the information to be vigilant and take action. I truly believe this with all of my heart. Hearing that something is beyond your control is scary but there are steps that can be taken to decrease your chances of developing cancer. It can give you treatment options that weren’t available to you prior to a positive result. It allows more aggressive surveillance measures such as mammograms, ultrasounds, and colonoscopies to name a few. A positive genetic test is not a death sentence and I am proof of that. Without the knowledge, my story may of have had another ending.

Everyone does what is best for them and there is no right or wrong way to deal with genetic testing but having information at your fingertips is priceless — I am living proof of that.

If you are considering genetic testing or are waiting for results, reach out, talk with someone, find a support group as no one should ever feel alone. There will always be a soft place to fall, regardless of the results if you are positive for a hereditary cancer mutation.

If you have questions about genetic testing and counselling, please check the National Society of Genetic Counselors.

BRCA-picture

If you have tested positive for a BRCA mutation or any other hereditary cancer syndromes including Lynch syndrome, please come join the BRCA Sisterhood. They are over 6600 women worldwide and all of us are dealing with similar issues. https://www.facebook.com/groups/brcasisterhood/   Everything is private. Talking with others who “get it” is priceless.

Much love,
Karen