Mark’s Cancer – What We Learned

Synopsis

In January 2014, Mark fell on a winch on our boat in the Marquesas. His chest hurt way more than expected, but the pain eased after a few days. Then, he felt a bump, which he attributed to the injury of the fall. Two months later while we were in the Tuamotus, the lump was still there, and we started to worry, so we sailed to Tahiti for a check-up. Upon arrival, we immediately rushed to the main hospital in Pape’ete, with subsequent visits. The ultrasound didn’t conclude anything, a biopsy suggested cancer, and in the beginning of May, Mark jumped on a plane to Boston. The tumor was removed in Newburyport, breast cancer was diagnosed, Mark was referred to Dana Farber in Boston and the fight against cancer started.  Another operation removing the sentinel lymph node followed with lots of talks to doctors and four weeks of radiation. After months of heavy emotions, meltdowns, disbelief, fear, anger and treatments, Mark should be cancer free at the moment, but there is no way of telling.

Male Breast Cancer Awareness!

MEN CAN GET BREAST CANCER. It is not something we ever thought of or imagined happening to Mark. Usually, male “victims” notice the bump themselves. We hope with Mark’s story, we have pointed out the possibilities of male breast cancer to our (male) readers. Although the chances are very small (1 out of 1000), or as Mark says “With me being the one guy to have breast cancer, none of my friends should have to worry about it anymore!” – be aware! As for women, and this is a shocking fact to me as well, the chance of having breast cancer at some point in your life is 1 out of 8; that is 12.5%!!! The breast cancer reoccurrence rate is 20%.

BRCA Gene Mutations

When Mark’s sister Dru passed away a year ago, after a long and brave fight against ovarian cancer, we knew she was a BRCA1 carrier. But, knowing that this gene mutation presented a higher risk for breast and ovarian cancer – both female diseases, so we thought – we were only worried for Dru’s daughter, who, fortunately, does not have the BRCA1 gene. Little did we know that Mark was a carrier of the gene mutation as well and a year after his sister’s passing, it would cause havoc in the family again. If you have a lot of breast and ovarian cancer in your family, it might be wise to look into the BRCA1 and BRCA2 history. The statistics are horrendous. Women carrying the BRCA1 gene have a 50 – 85% risk of developing breast cancer (and > 50% chance of a second one) and a 20 – 40% risk of developing ovarian cancer (which has a high mortality rate, because by the time it is diagnosed, it is usually a stage 4 cancer!). For men with the BRCA1 gene mutation, the risk for breast cancer is 1% (yes, Mark is a rare case) and there is an increased risk for prostate and skin cancer. Men and women with this “gene” also have a higher chance of developing pancreas cancer.

The Importance of Healthy Food

It is common sense that eating healthy is important, but we didn’t realize just how important it is – in relation to breast cancer - to cut certain foods and drinks out of our diets. In Dru (who ate incredibly healthy vegetarian and organic food for most of her life) and Mark’s case, the bad genes ignored the healthy food approach, but Mark and I still believe that eating healthy might decrease the risk of (breast) cancer reoccurrence or of the development of new cancers, as it would in the general population. The big no no’s are sugar (which “feeds” cancer cells), fried food, processed meat and alcohol. But, non-organic and genetically modified food are also not good for you, and one should be careful with certain oils (especially palm oil, which is awful for the health and the environment), red meat and canned goods. 

Unfortunately, following this advice is basically impossible with the current attitude of the food companies and with what is available on the market. The only way to live a healthy life in this culture and this time is to grow your own food, which is only partly doable for most, or buy all organic produce, which more and more grocery stores offer. The GMO foods are a toughie for everyone (yell at the FDA!). And, if you add living on a boat in the middle of the Pacific with limited food availability to that tidbit of information, following a certain diet becomes hard. But, we will do our best and try to stick to chicken (with no added hormones, and ideally antibiotic-free), vegetables (especially cruciferous ones: broccoli, cabbage, bok choy, spinach, sprouts …), olive, canola and peanut oil, fruit, whole grains and tea. Phytonutrient-rich foods and anti-oxidants are recommended.

The Experts

Mark and I cannot thank our medical team of Dana Farber and Brigham and Women’s hospitals enough for their knowledge, help, time, understanding and compassion. Thank you to medical oncologist Dr. Jeselsohn, radiation oncologist Dr. Harris with nurse Mary, and surgeon Dr. Carter. We also appreciated the professionalism and care of Newburyport doctors Dr. Jackson and Dr. Bentley.

The Support

And, while we are at it, we would like to show gratitude to all our friends and family for their support by emails, phone calls or in person. We are very fortunate and grateful to have found a personal retreat in the house of Mark’s parents Stan and Carol and in AstraZeneca Hope Lodge in Boston during this ordeal. And, last but not least, we thank our good cruising friends Leo and Gesina of SV Seluna, Fabio and Lisa of SV Amandla, and Birgit and Christian of SV Pitufa for keeping an eye on and taking care of our floating home Irie in Tahiti during the last 3.5 months!

The Future

Who knows about our future? Who knows about any future? In the short term, Mark and I will go back to Irie and spend more time in French Polynesia (Societies). As of now, Mark’s chest is still red from the radiation and a lot of the hair has to grow back. He will take the hormone drug Tamoxifen for 5 years (depending on possible side effects) and needs a check-up every six months. We will never know whether the breast cancer is totally defeated, or whether it will reoccur, or whether another cancer will develop. Cancer is part of our lives now and forever, but so is our love for each other and the realization that medical discoveries and cures will keep improving…

One of the "bridges" between Dana Farber and Brigham and Women's

Walking through one of the "bridges" between the main hospitals

Mark and his surgeon, Dr. Carter

Mark and the helpful Darlene of Dr. Carter's office

Weekly check-up with Dr. Harris and nurse Mary

Thank you to all our friends and family for their support

Hope Lodge – “It’s Almost Worth It!”

Amazing. Incredible. Unbelievable. Generous. Indispensable. These are some of the words that come to mind when Mark and I think about the AstraZeneca Hope Lodge in Boston. The Lodge, an initiative of the American Cancer Society, offers 40 cancer patients and their caretaker a free place to stay during their treatment in Boston’s first rate hospitals. This way, the patients – who have enough going on in their lives – do not have to worry about (expensive) accommodation and can focus on what is most important: their health and recovery. One of the requirements for staying at Hope Lodge is that you have to live more than 40 miles away from Boston. Since our floating home is located 6000 miles away, we qualified!

Based on the staggering amount of people walking the hallways and occupying the waiting rooms in Dana Farber Hospital, cancer is very prominent and heaps of patients are being treated. With only 40 rooms, Hope Lodge is very popular and almost always full. Mark and I were on the waiting list until two weeks into his radiation therapy. We were able to drive into the city daily and start his treatments on June 25^th, a very time consuming and arduous task, but it was an option for us, while most guests at Hope Lodge live too far away and can only start their treatments from the moment there is room availability. One day, we received a call that there was space, and we moved in for Mark’s last two weeks. What a relief, comfort and convenience it was to have our own living quarters and to be able to walk to Dana Farber for all the appointments!

Not only did we have our own suite (with bathroom, seating area and beds), but many common areas were at the guests’ disposal: from family, TV, and game rooms, to libraries, a small movie theatre and a couple of outdoor areas. The first floor contained four full size kitchens - where every couple had a designated locker and fridge and freezer shelf - and a massive communal seating area. Activities were organized daily and consisted of yoga sessions, grocery runs, game and movie nights, musical entertainment and free meals organized by volunteers. Free van transport to Boston’s major cancer institutes ran hourly. In the vicinity a big park with greenery and a pond lured us for strolls, and a Whole Foods supermarket was a 15-minute walk away.

Being at Hope Lodge meant that Mark’s treatments only took a 1.5 hour chunk out of every day, leaving more time to work, socialize and exercise. One afternoon, we said “hi” to the dogs at the Humane Society, a short walk away, one Sunday we explored Boston, and another afternoon our “old” cruising friends Cindy and Gray (who we sailed with in the Bahamas more than six years ago) came over for a visit. One evening I gave a presentation about our boat life and scenes from the Pacific. Everyone at the Lodge was courteous, friendly, helpful and caring and we met some great people. With everything going on the last months, our time at Hope Lodge was somewhat of a silver lining and we are very happy and appreciative we managed to stay there. As Mark and I joked with some people there: “It is almost worth getting cancer to be able to experience Hope Lodge!” Whenever we have money, we know where to donate…

Harvard University in Cambridge, Boston

Olmsted Park near Hope Lodge

Practicing with my new camera

Boston city center

Quincy Market in Boston

Feneuil Hall in Boston

Paule Revere house

Charles W. Morgan whaling ship in Charlestown, Boston

Hanging out with Mary at Hope Lodge

Communal living room (where I worked)

Schedule of activities, Hope Lodge

Garden at Hope Lodge

Mark and Liesbet with Shelley and Sharom; a great couple!

On the way from the hospital to Hope Lodge

Cindy and Gray coming for a visit at Hope Lodge and staying for a dinner made by volunteers

Video of Mark's Radiation Treatment

For the people who are curious about radiation therapy and are wondering how each treatment looks like (I was!), here is what happens... First the technicians adjust the machine and settings to Mark's needs, then they position him on the table and leave the room. Mark previously picked a song he wants to listen to and stays put for a few minutes, while he gets "zapped"! Turn up the volume to hear the music he picked for his very first radiation experience. :-)

Mark’s Cancer: The Next Step

A few weeks have passed since Mark had his last operation to remove a lymph node, in order to define whether his breast cancer has spread. Since he was diagnosed with invasive papillary carcinoma, a very rare, but encapsulated cancer, everyone assumed the lymph node would be clear. When we received the pathology report, however, 80 scattered cancer cells were found. Nothing to worry about, so the specialists said, because those cells don’t mean much (“We count this result as 0” – Hmm, we thought zero actually meant zero…) and they might have ended up in the lymph node system after the first biopsy “poking” in Tahiti. We also found out that Mark, as assumed, has the BRCA1 mutation, which is now generally believed as the cause for his breast cancer.

Other than that, Mark is healing well from surgery and we have come to the point, where we now have all the information we need about his situation. What we don’t have is results, statistics or accurate prognoses about his disease, because he falls in a category all by himself. Mark is a male of 43 years old, with the BRCA1 gene and a very uncommon type of breast cancer. Usually, when a man is diagnosed with breast cancer, they automatically do a mastectomy, since, usually, not enough breast tissue is in place to remove the tumor with clear margins. In Mark’s case, his surgeon from Newburyport did a great job and succeeded to remove the tumor with clear margins, meaning all the cancer would theoretically be removed just by this “lumpectomy”. Hence, the preferred follow up treatment would be radiation and hormone treatment.

Fast forward to a couple of days ago, when Mark’s case was brought to the “tumor board” in Dana Farber, one of the top cancer institutes in the US. Mark and I were meeting with our radiation oncologist (and head of the radiation department) to set up the radiation plan and to see what the board had decided. Big – and unpleasant – was our surprise, when we heard that many people of that meeting felt that a mastectomy would be the best plan of action. What??? I thought we had passed that point already? Where the heck did this come from all of a sudden? Here we believed we had a plan and we could move on, starting with the treatment. Instead, we were offered an alternative again and, worst of all, after some more thinking and talking, this alternative (which was actually an old alternative that had always been on the table) started to make sense!

So, there we went again, thinking, talking, reading and researching (mostly in vane) our two options: mastectomy (= another operation, a few weeks recovery, a permanent scar and missing nipple, but that’s it) OR radiation (for four weeks) in combination with hormone treatment (for five years) with possible side effects. Both options had the same outcome and chance of recovery, but which one would be better to prevent any recurrence, which is now all that matters? It boiled down to a personal preference, and… Mark was “lucky” he had a choice!

It is June 20^th today and Mark has been in the States for over a month and a half, about the same time we have known about his dreadful cancer verdict. As of this day, we finally have a plan and a schedule and that is good news. Yesterday, radiation technicians “mapped” his body for the weeks of therapy to follow, and on June 26^th (after a “dry” run the day before) his 19 radiation treatments will start. Five days a week, he will have to lay in a machine and get zapped (the actual radioactive beam will only hit him one minute or so). Once all this is finished and we have met again with our wonderful, skillful and highly experienced medical team of Dr. Jeselsohn, Dr. Carter and Dr. Harris (all three are also professors at Harvard University), Mark will most likely have to take the hormone drug Tamoxifen for five years. This, with a personal choice of natural remedies and a healthy lifestyle should minimize bad cancer cells to linger around, multiply or recur. We sure hope so!

The CAT-scan machine for Mark's "mapping"

 

Mark's view from the CAT-scan machine. Looks familiar? :-)

The radiation technicians left some magic marker spots behind. Five tiny, but permanent tattoos will help line up the machine during treatment.

Cancer Update: The Operation

As we are living day by day and getting through a whole array of “cancer curing” procedures in a slowly manner, Mark and I can check one more thing off the list: the operation. On June 3^rd – a week earlier than initially scheduled (thank you, Dr. Carter for understanding our situation) – we drove back into Boston and endured the two hour traffic jam once again. This time, our destination was Brigham and Women’s Faulkner hospital, a good mile “down the road” from Dana Farber. Even though the operation wasn’t until 1pm, we had to be there for pre-op arrangements at 10am. The sun was shining brightly, while we spent all day in an icy cold sterile environment. Of course, this was the least of our worries.

 What's wrong with this picture?

After the mandatory paperwork was filled out, we waited. At 11am, I joined Mark to the nuclear medicine department. He was pretty excited about this part… A doctor injected him with a radioactive material, which was supposed to flow into the sentinel lymph node(s). This would enable the surgeon to find the right node(s) with a Geiger counter, before removing it/them for another biopsy. It is the only way to find out whether the cancer has metastasized (spread); the fluid would “follow” the same path the cancer cells would follow. Precautions were taken and while a radiation technician assisted the doctor, I watched the clear material being injected into my husband, who was reprimanded for trying to help hold the blood stopping gauze down on his chest. “Don’t touch this stuff with your hands!” Hmmm. I guess it is only safe to have radioactivity inside oneself? At least Mark didn’t seem to be glowing! Of course, it was not dark enough to really tell…

After the radioactive injection

More waiting followed and around noon, Mark went into the pre-surgical area to be hooked on an IV. I joined him later and together we waited for a couple of hours more. The surgeon was running late, but we didn’t mind. We were happy the procedure would take place that day and did not want her to rush on anyone. Around 3pm, I left Mark in the good hands of nurses, anesthesiologists, and Dr. Carter. She found me an hour later and reported that everything went fine. The operation had been a success and one lymph node (as opposed to two) was removed for further investigation. It took “dopey” Mark a little while to wake up (apparently, he is a “light weight” :-)), before we got into the car for the slow ride back to Newburyport, where we arrived twelve hours after leaving. Now, he is slowly recovering without too much pain and discomfort, and we are waiting for the lymph node report.

Nuclear Medicine Department

Filling out yet another consent form

 

Really??

"I am radioactive" sticker - a piece of memorabilia

Nothing Else Matters

Change of Plans

Mark and I are taking hot, pressurized showers, doing laundry in a machine, driving a car to the grocery store and spending time away from Irie. I enjoy ice cream, almost every day. No, we are not on a holiday, even though we planned to treat ourselves to a week of vacation on Easter Island in May; it would be the first real vacation for us in over seven years (even though that is probably hard to believe). Instead, a very eventful May has passed and we are in Newburyport, Massachusetts, USA.  Not by choice, but very glad to have friends and family around. Mark has been here almost a month and I arrived two weeks ago. When we will be back on Irie is anyone’s guess. How plans can change fast and unexpected…

Just Like That…

In January, Mark fell with his torso on a winch. He was in a lot of pain. Two weeks later, he noticed a bump under his right nipple. It had to be a result of the injury. Taiohae does not have the right equipment for an analysis to check it out; we didn’t bother. A month later, the bump was still there, seemingly of the same proportions. It would have to heal soon. Apataki does not have a hospital. We dealt with crappy weather and a successful haulout. Another month later, we went to the infirmerie (clinic) in Fakarava. There is no doctor in the village; the nurse thought the lump was related to the injury, but recommended us to go to Tahiti to have it checked out. About two weeks later, we arrived in Papeete on a Friday and immediately went to the public hospital. An ultrasound was scheduled for the following Tuesday. No conclusion was reached, but the doctor managed to do a biopsy the same day to not delay any further investigations. The biopsy result arrived another two weeks later. “I have bad news for you. You have cancer!” The world around us collapsed.

Biopsy report of the hospital in Pape'ete

Are We sure?

The emotional roller coaster ride started and would last for a long time to come. We translated the French biopsy report and different doctors and surgeons had a look at it. It could be cancer. Or, it couldn’t. Is it? Or, is it not? We were shocked. We were relieved. We were in disbelief. We were confused. The diagnosis was a bit ambiguous, but all agreed that removing the lump would be the next step. Would we have that done in Tahiti? Or in the US? How about insurance? A few visits to doctors’ offices in Pape’ete followed. Four days after hearing the initial diagnoses, Mark was on a plane to Boston. Cost: $1800!

I stayed on Irie, still hoping the tumor was benign and that Mark would be back in three weeks. I could use a little personal time to work on a few projects and cruising friends kept my spirits up and had me over for dinner. Mark underwent a successful operation in Newburyport and another biopsy followed. Conclusion: he had, indeed, breast cancer… against all odds. He was a male of under 60 years old and – definitely – not obese, but… his sister had the BRCA1 gene mutation and passed away last year after a long fight against ovarian cancer. Everybody now assumed Mark had the bad gene as well.

A Hell of a Day

Once this news came to me, Monday afternoon (May 12^th), all hell broke loose on Irie. I spent hours on Skype, through a crappy internet connection, to secure a flight for Wednesday. I had one full day to prepare Irie and leave indefinitely (a scary thought in itself). To make matters worse, the swell was unusually high that night and the following day(s). Irie was pitching wildly during the rest of my stay in Tahiti. I didn’t sleep at night, and got up at 4am to start prepping the boat and communicating with Mark and friends. In between chores, every ten minutes or so, I had to rush outside and gag, losing a lot of precious time to let my stomach settle. The combination of stress, emotions, seasickness, heartache and adrenaline is not a good one. But, I survived and – with the help of good friends – got the task done before dark (6pm), when I really had to start packing. Another bouncy, sleepless night and I was picked up at 5am the following morning to get to the airport.

Massive waves created a very bouncy anchorage before I left

Our heartfelt gratitude goes out to Chris and his family on SV Iona, Leo and Gesina on SV Seluna, Cheryl and René on SV Gypsy Blues, and Lisa and Fabio on SV Amandla! More names will undoubtedly be added to this list based on how long we are separated from Irie. 

Invasive Papillary Carcinoma

It took a few weeks and a whole lot of appointments and opinions before we came to the point of knowing for sure what Mark’s cancer is all about. I will not bore you with the details or the array of emotions involved while waiting for results. We went from a suggested double mastectomy to a less drastic lumpectomy in combination with radiation, possible chemo and a predicted treatment period of 3-7 months. All pretty shocking, when just weeks before, you were planning on sailing in the Society Islands, looking forward to a scheduled visit from family in June and then slowly heading west to Fiji for cyclone season.  No more anticipation is to be had, however, and planning anything at this point is useless.

Waiting for a check-up by the surgeon

 The diagnosis of Mark’s cancer is invasive papillary carcinoma, a very rare type of breast cancer, but – apparently – a “good” one; one that is less likely to spread and that is responsive to treatment. 1 out of 1000 breast cancers is detected in men; less than 1% of all invasive breast cancers is papillary carcinoma! 10% of the breast cancers in men is caused by the BRCA2 gene, not the BRCA1… Mark is unique (nothing new there :-)) and presents an interesting case study. As of now, his suggested treatment consists of an operation to take out the sentinel lymph nodes (scheduled on June 3^rd) to make sure the cancer has not spread, 5-6 weeks of radiation after the results of the pathology report will be known and radiation mapping has taken place (all time consuming), and 5 years of hormone treatment. Things might change based on the lymph node report.

To Be Continued…

Mark is in the good, but busy, hands of Dana Farber in Boston right now. This is one of the world’s top cancer institutes and we are very happy and fortunate that he can be treated there. The downside is that everything takes a long time (according to our antsy minds and purposeful reason to be here), with a plethora of specialists involved and many patients needing treatment. Over the coming months, I will post updates about our progress fighting the cancer and – hopefully – about some fun (summer) activities in New England. Our sailing adventures and stories are on hold!

At Dana Farber to meet with the genealogist - patients are "branded" and can be tracked!

 

Meeting with the head of the radiation department at Dana Farber

After problems with the first BRCA1 test (for insurance reasons), Mark has to send another sample

A new spit sample is packed up and ready to go to the lab in California