Five Tips for Facing a Rare Cancer

By Becky Sail

At age 22, I was diagnosed with a rare sarcoma called aggressive angiomyxoma – say that 10 times fast. When my parents and I got the news we asked the doctor, “Is it cancer?” He responded, “That is a complicated question.” He said he had never seen it before and I needed to get to New York or Boston – there were only 250 reported cases in the world, ever.

rare cancer, becky sail
Becky Sail

Fortunately, my job relocated me to Boston and I was able to choose Dana-Farber for my care, which I am so grateful for.

I have always faced my life with courage and spunk. But this curve ball made me dig really deep and re-define my strength. When you have a rare cancer, you often feel forgotten because there is minimal or no research to guide you.

Here are the top five things I’ve learned throughout my journey:

1. Give yourself a minute.

Any cancer diagnosis is hard to process, but a rare cancer is a whole other ball game. I was always so hard on myself when I would have bad days. Give yourself a gosh darn minute! I mean days, months, years! It took me about four years to say “I have cancer,” and five years to start using my story to help others (which also helped me). When you have a rare cancer, you may not go through the treatments other cancer patients are having, and you may even look completely normal, but guess what – you are still fighting the fight.

2. Get Smart.

Or, as they say in Boston, Get Smaht. When I was first diagnosed, I couldn’t even spell the name of my tumor! Now, I have doctors asking if I am in the medical field because I know so much. The day I got the pathology back, I went home and started Googling. As you rare friends out there may know, when you are as special as we are, Google doesn’t do much good. Instead, tap into your own resources. Give your friends and family assignments. Before I knew it, my sister compiled a whole binder of research by using medical journals and databases she and her friend had access to, and my parents lined up appointments with the specialists I needed to see.

3. Like your team.

You have a right to feel comfortable with your doctors. You must trust them, be able to ask questions, and feel like you are working together. You deserve the best. When I say best, you may think that means the most credentialed doctor for your disease – yes that’s great – but you need to find the best fit for you.

4. Do you.

You must take care of yourself, both physically and emotionally. I have always been a busy bee, a go-getter, a giver; so after my diagnosis I actually had to make a conscious effort to take care of myself. Make time for activities that support your well-being. Take a look at your life, and what and who are in it. That whole “cancer puts things in perspective” thing? Listen to it. And let’s face it, there will be times when you feel alone. Find out what makes you feel less alone. Is it a support group? Talking to a friend who is going through cancer too? Crying and screaming it out? You have to feel, to heal. Find what makes you feel.

5. Blaze your own trail.

Write your own story. Every day research in cancer is progressing. I see my doctor every four months, and each time she has a nugget of new information for me. Ask for this information. Probe. Stay curious and connect your doctors with each other. That is how you will continue to re-define your story. Be the “strategic planner” for your cancer.

Becky Sail is co-chair of Dana-Farber’s Patient and Family Advisory Council. Follow her blog

12 thoughts on “Five Tips for Facing a Rare Cancer”

  1. Thank you for this article. I’m hot-off-the-presses newly diagnosed with appendiceal carcinoma. I’m curious by nature and I have a wicked sense of humor- both of these personality quirks serve me well in saving my own life. I’m also pragmatic enough to allow myself time to grieve and move through this as I must. It’s also hard work and I’m prone to being leisurely in real life. So this is quite a change for me.

    My main partners in this merry adventure are my son, Spike- he’s with me through the toughest things like surgery and post-surgical visits… And our wonderful friend Maggy keeps the house, pets and everyday things running for us while we’re away… Her teens walk and play with our lonely dog, feed our grouchy cat as well as keeping my kitchen clean while I’m unable to be on my feet… They’ve been incredibly supportive in the weeks after surgery…

    Finding literature or dialogue on this rare cancer has been difficult. I rapidly lost faith in my original oncologist as she’d change course- quite literally- every single time we’d meet.

    I’m dog paddling in a huge ocean and need to rely on that life preserver- each bit of information is like a ring tossed out to me- gives me hope and something to hold on to. It gives me something to tell my family, my friends… Yet having that change week to week… left me despairing. After the 6th visit, the 6th change up- I knew that I had to break up with my doctor.

    Having a rare cancer makes this impossible to find a doctor with experience treating this disease in my area. I have an oncological surgeon in Miami but I need a local oncologist for upkeep, maintenance and chemo…

    The one that won my heart openly admitted that while he has no experience with appendiceal carcinoma, he’s completely iintrigued by the disease. He said he’s intrigued by me, my gung ho ‘let’s slay this dragon’ attitude. And of course by the amount of research I’d done on my own. This doctor told me he’d be honored to be on my team.

    The thing that sealed the deal with him; I’m taking yoga and guided meditation classes specifically designed for people with cancer and their care givers. The Sari Asher Center offers this integrated therapy in conjunction with western medicine. This helps my healing, staying grounded and emotionally supported. Chatting with the CEO the other day about my search for experienced doctors and I mentioned the inexperienced but ‘intrigued’ doctor- I was thrilled to hear this doctor is affiliated with the Sari Center. That’s it. He’s mine.

    I’m 57 and just starting this adventure. Life has changed since I fell down this rabbit hole. I was weak after the original surgery to remove my appendix- originally the mass detected through tests was thought to be an ovarian tumor- the surgical team was surprised to find this was my appendix…

    I’m scheduled for Hyperthermal Intrapertoneal Chemotherapy surgery (HIPEC) next month and I’m totally psyched to have the opportunity for my peritoneal cavity being groped and prodded by the team in Miami… It’s the very best option for this type of cancer. My original doctor told us “this procedure is No big deal”.

    It IS a VERY big deal! It’s invasive as hell as it has a surgical team feeling around the surfaces of every organ in my peritoneal cavity for cancer tumors and shaving off what little bits they may find. And it also entails filling this cavity with a chemo solution heated to 105° degrees and rocking my poor body around to slosh the solution into every nook, every cranny… I’ll be fitted with drains, tacked back together and sent off to ICU.

    And I’m totally thrilled about this. Survival rate is great- as is looking forward to a higher quality of life… My mind is completely wrapped around the process.
    I’m looking beyond this to a long and healthy life. Cancer has offered me a complete paradigm shift, it knocked me off my rails for a bit, but we’ve been through worse.

    Keeping a positive attitude helps. Owning the process and driving your own life through everything, helps. Ask questions, take notes and insist on knowing everything you need to get yourself through these times. And laugh. Laugh like your life depends upon it.

  2. Becky
    Imense gratitude for proactive people like you.
    I so agree with your tips.
    I was diagnosed with Leiomyosarcoma in April 2013, and have been on several treatments since Feb 2014. Currently I fly from Florida to Boston every 2 weeks, as I am a part of a trial at Dana-Farber (anti-PD1 antibody). This treatment has proven very effective for many hard to treat cancers, and we are very hopeful it works for sarcoma too. I have published a book, MY JOURNEY WITH THE PURPLE DRAGON. The reviews have been beyond my dreams, as people, both with cancers and most surprisingly, healthy ones, have found it inspiring. Profits to go cancer research. Best wishes and may health be with all of us.

  3. Thanks for the amazing tips!! These are actually motivating. My friend is suffering from sarcoma cancer. It has been developed from some bone tissue. He got the first sign of sarcoma in arm and suddenly it got swollwen. He did not took it seriously and is now suffering from the same. He is under treatment and I am sure this tips will definitely motivate him. Thanks for sharing!! God bless

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