Using Family Loss to Sing Awareness of LFS for Mo and Kerry

 

My name is Kathy Higgins. I have lost 4 family members to LFS.

 

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KERRY

Kerry was first diagnosed with cancer at the age of 12, an osteosarcoma in her thigh. She received chemo and had multiple operations on her leg. Kerry also had several small cancer issues over the years, skin spots on her face and back. She was not diagnosed with LFS at the time because the year was 1995, and LFS was just being discussed.

KerryShe was 30 years old when she passed away in 2014. She had a recurrence of breast cancer from 2005. Without the LFS diagnosis, her breast cancer would not have been detected due to her young age. She had a double mastectomy in 2006 when precancerous cells were detected in her breast. Kerry knew there was a 93% chance those cells could turn into cancer. About 1% of breast tissue was left after the surgery and that is where the cancer started to grow, fueled by pregnancy hormones. Many LFS breast cancers are hormone driven cancers. Kerry was the mother of 2 little girls, ages 3 and 5. She had a loving husband of 8 years.

MO

Maureen.In 2002, our second daughter Maureen who was 18 years old at the time, developed a stage 4 adrenocortical carcinoma before we even knew she was sick. At this time, doctors decided it was time to look further into our family history. Maureen had surgery and chemo, but did not respond well to chemo. We lost her within 4 months.

 

FINDING LFS

Upon researching our family history, we discovered my husband’s dad passed away at age 37 in 1966 from a brain tumor. In 1993, my husband’s sister died at age 32 after battling 3 different cancers, Breast cancer, cervical cancer and leukemia over 2 years. Now LFS was discussed as a possibility and Kerry was tested and positive for Li-Fraumeni Syndrome. My husband also tested positve, but not until 2015, until then we presumed he was positive since Kerry was.

My husband Jim did not present with his first cancer until the fall of 2014 with a sarcoma in his arm. The sarcoma was treated with radiation prior to surgery in 2015. All went well until another sarcoma was discovered in his thigh in May 2015. The sarcoma was removed with no recommended follow up treatment by Dana Farber Cancer Institute. We are scheduled to go back to DFCI in November for follow up and to check for new cancers.

MAKING A DIFFERENCE

As a wife and mother, I was beside myself with grief and terrified my husband was going to suffer the same fate as Kerry, Maureen, his dad and sister. I felt so helpless to stop this disease. I decided to become an advocate for LFS awareness and raise money for research. I want to be able to help identify other families that have the same mindset we had, in that we were just an unlucky cancer family. That changed when our LFS diagnosis was found. LFS Awareness is key to survival. Many doctors do not know about LFS and are missing key signs in families that could be affected with this mutation. My goal is to travel to all of the doctors and medical facilities in my surrounding area and try to educate them about LFS. Then they can help LFS families stay healthy. Currently we have to travel 6 hours one way just to meet with a doctor that is familiar with LFS and can help us follow a healthy protocol to screen LFS patients for early signs of cancer. In this day and age, this is just not acceptable. So, in September 2016, I travelled to California to attend a rare patient advocacy training conference, so I can be a better, more effective advocate for awareness and fundraising for the LFS community.
I can never bring back my daughters, father-in-law or sister in law, but if I can even identify one family that could be saved from the heartache our family has endured, it will be worth it.

MO SONGS FOR KERRY

Mo songs for Kerry Hiigins fam

I started an organization called Mo Songs for Kerry.org with a couple of my girls’ friends and family. Every year we host a large fundraiser in upstate New York. Our 4th Annual event will be July 29, 2017. We use this event to raise awareness for LFS but also to raise money for research. Local news stations helped us do this for our past event, we had 4 different stories run in the local TV market. We are very grateful for the support our local media has given ups and the awareness of LFS. A portion of the proceeds also go to a local hospital run guest home that caters to families with loved ones in the hospital and patients who are going through long outpatient treatments.

Li-Fraumeni Syndrome is a very difficult thing to live with. You are always waiting for the other shoe to drop and you feel like the boy who cried wolf if you go in for every lump, bump or pain as if it is cancer returning. It makes living a normal life more difficult but at the same time you learn to appreciate every day you are given. If you are diligent with screenings, you can live a normal life.

LIVING LFS

We can not let living with LFS cause us to not live life to the fullest. WE will do our best to live and honor our girls and their memory by living life as healthy and happy as we can. We know this is how they would have wanted it. Kerry lived with LFS for 10 years and got married, started a business and had 2 beautiful healthy non mutant little girls. She carried firewood into her house 3 short days before she died and was entertaining all the people in her hospital room mere hours before she passed away. She lived life to the fullest even with the tremendous burden on her mind. I am very proud to be the mother to these two special ladies and I hope to make them proud with my efforts to make a difference. I will be a warrior beside my husband and do everything I can to help him be screened carefully and get treated right away if any signs of cancer appear.

I am very grateful for the LivingLFS.org website and support group where we can connect with other families going through similar problems. We are all stronger if we support one another and share our trials and tribulations as well as our joys of negative test results and positive treatment outcomes. Before discovering this website we did not know a single LFS family. Hugs and Prayers to all of you out there dealing with LFS. We are stronger together!


Living with Tough LFS Decisions

There really are no easy decisions where cancer is concerned. It’s usually an exercise in choosing between a tumor and a hard place. Some people find it is easier for them to just listen to the doctor and follow the guidance to a T, others will spend gruelling hours doing their own research and soul searching the right decision for them.  One of the comments we frequently hear in our support group is that- there are no right or wrong answers, just what is right or wrong for you.

When I was a little girl, I would agonize over decisions. I had the toughest time with “what do you want”. My gut told me one thing, but my brain would try to rationalize future outcomes and possibilities. My mom would sit me down and have me make a list. From which sport should I play, to which classes should I take in college, to what treatment should I do for breast cancer, she just would ask- have you made your list yet? A list was a simple way to visualize the thoughts that swirled around my head and wrangled them into a tangible, quantifiable form. Usually the answer was right there and the list gave me the confidence and “the data” I needed to make my choice.

Living with LFS will present many tough decisions. Often we have to choose between several less than optimal options. We talked a bit about this in the blog The Shark Closest to the Boat. From the time we have to consider genetic testing(will this affect my insurance, my job, how will I tell my family, what if I am positive) to trying to find the best screening(I want screening but insurance won’t cover it, my doc says it’s overkill, I don’t know if I can handle the stress of all those tests) to how do I live best to prevent or fight cancer, there is a lot to consider.

Decisions are a lot like flow charts, big complicated webs with lots of factors.  I had a friend once tell me they set rules before their daughter started treatment. When it came time to make some really really tough decisions, the rules they set out gave them the framework to make the hard choices, impossible choices. The “rules” can be individual, or family based, as simple or complex as you need. Sometimes it’s as simples as- I do not want to be in pain.

Some things to think about are:

What are your priorities?  Is it quantity of life or quality of life? What are you doing it for? Who are you doing it for?

What are your goals?  Big picture, what are you shooting for cure, control, or comfort?

What are the Options? There is always a choice, sometimes it’s an awful one. Sometimes you are choosing between a tumor and a tough place. Sometimes the choice is to do nothing. Sometimes the choice is to let someone else guide the decision.

What is the Benefit versus the Risk? Write it out if that helps you visualize it, every thing you can think of from fear of dying to wanting to travel to losing hair or the financial costs. There are times when your mind comes back to one or two of the items and they will weigh on you. Pay attention to that.

What information do you need? Do you need to hear from the specialist in the field? Or is a valued friend’s opinion most important? Is it a balance of them all? Realize that it’s easier to give an opinion on someone else’s decision than our own. Advice is just that. If you ask for it, listen to it- take away what you need and leave the rest.

Remember a few things during the process:

Breathe. We need oxygen, breathing centers us and gives us a moment to think.

Take your time. It feels really really urgent. Sometimes it is, but it is important to make the right decision for you than to rush into something you will regret.

You can CHANGE your mind. You can stop treatment if the side effects are horrible, people do it all the time. You can start treatment later if you decide that it is right for you. As new information develops, it might affect your decision. It’s ok to change your mind.

Get a Second Opinion. Or a third. Or a fourth opinion. Talk to whoever you need to that can give you information or confidence you need to make the tough calls. Sometimes a doctor or a specialist can explain the information in a way that makes more sense to you. Sometimes all the doctors say the same thing. Sometimes by hearing a different opinion, you realize what you need to do.

Trust Your Gut. Your intuition can be a good tie breaker. You know you. You know what you can live with. It doesn’t matter what someone else does if that would make you miserable.

Make Peace with It. Once you have made your decision, make peace with it. Should have, could have, would haves do not belong in the future and that is where you are headed. Leave them in the past. You are in the now. You can learn from experiences and apply it, but know you made the best decision you could at the time with the information available to you.

If all of this is truly overwhelming(how could it NOT be) there is an entire field of psychology now dedicated to oncology. The field of psycho-oncology has trained therapists who can help address the special psychological, social and spiritual needs that affect cancer patients, their family and survival. To find out more about this field or to find a resource near you, click HERE. The American Psychosocial Oncology Society also offers a help-line- if you or someone you love needs assistance finding psychosocial support for cancer needs in your area, they can help:

APOS’ Toll-Free HELPLINE – 1-866-276-7443 (1-866-APOS-4-HELP)