Genetic Testing - now what!!

It has been a very long time since the last post.  I see the last post was about the Latissimus Dorsi Flap procedure.  So, what now?  Genetic testing has finally come down in price enough that we figured it was time to have it done and see if there is a BRCA mutation for the sake of our children and grandchildren.  We got the results and BRCA is negative but we got the news that there is a CDH1 gene mutation! Didn’t see that one coming!  Huh?  Looking up CDH1 brings a whole new twist to things.

Copied from the site nostomachforcancer.org:    “Hereditary Diffuse Gastric Cancer (HDGC) is one type of stomach cancer that is sometimes caused by a mutation in the CDH1 gene. These stomach cancer cells are diffuse, meaning that they are widely spread or scattered throughout the stomach, making it nearly impossible to detect them at an early stage. The recommended treatment to prevent the development of this aggressive form of stomach cancer in CDH1 gene mutation carriers is prophylactic (preventive) total gastrectomy – complete removal of the stomach. People with other types of stomach cancer may also undergo total gastrectomy as part of their treatment plan. Total gastrectomy is also performed to treat some non-cancer medical conditions. The reconstruction that follows total gastrectomy is referred to as Roux-en-y.”  Did you get that?  It said complete removal of the stomach is the treatment! 

  

So now to the Doc next week to see how to proceed.  Vonnie will be seeing her breast surgeon that ordered the test and we assume that she will be referred on from there.  Our girls plan to attend because it is genetic and could very well be passed on to them (and/or our son). We also will try to determine which branch of the family this was passed on from, her mother or father, so other relatives may be informed and hopefully get tested.

OK - Appointment with Doc went well.  We were told the test showed the CDH1 gene was a  variant of uncertain (or unknown) significance! This is good news so we are told. No further testing for family members and nothing to be done (at least for now). 

Vonnie had her surgery today.  Latissimus Dorsi Flap procedure.  The surgery took 5 hours and all went well.  We will be in the hospital for 2 to 3 days.  She is currently on  heavy pain meds and resting. 

UPDATE: 
It's been a few years since the last post.  Vonnie has had all great checkups.  Just had an ultrasound done and all is clear.  There is one issue however.  The radiation she had caused capsular contraction around one of the breasts and has been causing tightness and pain.  She is going in tomorrow to"re-do" the reconstruction.  She will have a Latissimus dorsi flap breast reconstruction.  The surgery should take around three hours and a three day hospital stay.  We pray all will go well.  Len

Reeling and Healing Event

I just attended a Reeling and Healing Event. It is a 3 day event for women in various stages of cancer treatment. It was held in Grayling, MI on the Ausable River. We were shown how to fly fish and then were teamed up with a guide that worked one on one with us. I landed my first and only trout soon after getting in the water the first day. What an awesome feeling. I can't wait to go out again and am making plans to do just that with my brother, Brad. I was able to attend with 2 good friends from our tandem club, CJ and Mary. This event was really emotional. We had 17 year survivors and those that were Stage 4 and really sick. It was hard to say goodbye to those that weren't doing well. I just hope that we helped to lift their spirits just a little.

Fish On is the slogan for the event and it has new meaning for me now. I went to the retreat thinking that it meant that we were being given a new sport to enjoy. I know now that it will always mean to me to relax, be at peace and enjoy the simple things in life.

CJ brought her son's fly fishing equipment with her and loved learning the sport that he had loved so much. Josh died 6 years ago from cancer just before she was diagnosed with breast cancer. She is a remarkable women that has been through a lot and I was really honored to be with her!

Almost done - final surgery over!

Sorry that it has been so long since my last update. Things have been going well for me. We have been getting some miles on our bike, now that the weather is getting warmer. We have surpassed 100 miles - not bad considering that we had less than 200 last year.


Our grandkids are really growing. It is so nice to be feeling better so I can spend more time with them. The babies are almost 4 months and 6 months old. They are starting to really develop their own personalities. How fun!

I have hair again. It came in curly and I love it. It is so easy to take care of!

I had my final surgery yesterday for reconstruction of my left breast and removal of my port. The surgery was an outpatient surgery and I was home by 11:30am. I am a little sore today, but not bad. It feels so good to say that I am almost done with this entire journey. I have 3 more Herceptin infusions that will now be given by IV. The last one is June 7. Yeah!

Our kids got me the beautiful flower arrangement and candle pictured. I have the best kids (and in-laws) in the world!

We are busy filling up our calendar with activities for the summer. We have one week in Door County Wisconsin for a bike tour, one week camping in July and 2 1/2 weeks for a trip to the Netherlands. Yes - on with life!!

What a difference a year makes!

It was one year ago today that we were sitting, nervously awaiting the results of my biopsies. We have been through a lot over the past 12 months, but are now looking forward to many good times ahead, thanks to God's healing hands.

I am sorry that I haven't kept my blog up to date. I have been feeling almost like my old self again. I still have radiation pain/burn that I am dealing with under my right arm. It is amazing how long it takes to heal, but it seems to be improving (minutely) every day.

I had my 11th Herceptin infusion yesterday. I have 6 more to go and then I will be able to get my port out. My last infusion is scheduled for June 7. The reconstruction of my left breast has been delayed due to major medical treatments that my plastic surgeon is getting. He hopes to back to work late March to early April. So tentatively I am hoping for an early April surgery. I would just like to get this all behind me, so that I can have a great summer!

I had my physical with my primary care doctor yesterday. After reviewing my recent year, he feels that I am currently one of his healthy patients. That is quite a change from this time last year. I have come a long way!

Of course, I have to share a few new pictures of our youngest grandchildren. Hailey is now 3 months old and Katelyn is 5 weeks old.

God's precious miracles

We were blessed once again with the birth of another grandchild. Katelyn Elizabeth Besteman was born last night at 10:55 pm. She weighed in at 7 lbs 6 oz and is 20 inches long. Robyn had an easy, short labor and both her and baby are doing well. We give thanks to God for blessing us once again. He has truly been there for our family this year!

The picture on the right is of Hailey meeting her cousin for the first time. Hailey is now 2 months old and weighs 10 lbs 10 oz. Check out the Calvin College t-shirt that she has on.