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

Comments Sort By Newest

12 thoughts on “Five Tips for Facing a Rare Cancer

  1. 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

  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. 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.

  4. My husband has liposarcoma. He was diagnosed in 2014. His first tumor was in his leg, then the lung and the pelvis. He’s had surgery and has just completed 12 more rounds of radiation on the lungs and pelvis. I wish we knew more about this liposarcoma and somewhere that specializes in it. We are at Shands Davis cancer center in fla.

    • Have you heard of Proton Radation? This is what I was treated with and I am about to have surgery to have the tumor called Primary Venous Leiomysarcoma removed from my iliac vein in my right leg as well as my right pelvic bone and part of my right hip. Good luck!

  5. I liked the tips, but I wish this article had clarified the description of aggressive angiomyxoma as a sarcoma. I trust the excellent pathologists at DFCI, but people reading this may want to know that some angiomyxoma is not classified as a cancer.

    I skimmed Becky’s blog and I saw that she got hormone therapy. In that way, she might have been able to connect with other women who get similar treatment, such as those with endometrial stromal sarcoma.

    Nikki, I’m a 13-year survivor of metastatic leiomyosarcoma that started in my vagina. I wrote a humorous story of my experiences here: http://sarcomaalliance.org/stories/suzie_siegel/ If you’d like to chat, you can reach me at suziesiegel@tampabay.rr.com

    You probably know by now that your two diagnoses are very close. Pathologists at three hospitals looked at my tumor before deciding on LMS. I’ve had 4 major abdominal surgeries, 1 lung surgery, pelvic radiation and a year of chemo. I served on the board of the nonprofit Sarcoma Alliance 2008-2013. The Alliance runs a Facebook page for support at: https://www.facebook.com/groups/9628193967/?fref=ts

  6. Becky I’m so thankful to have you as a part of our AA family! You are such a strong woman and an inspiration to us all to fight for our rights as patients.

  7. Becky, you ROCK! I’m SO happy to hear that you have battled through this awful diagnosis! Yea!
    I was also diagnosed with Sarcoma (which is a rare enough Cancer) in 2013. I had actually discovered the tumor myself and despite the fact that my Gyneocologist absolutely was certain it was just a cyst, I my father had Rhabdomyosarcoma when I was younger. Even though having 2 people in the same nuclear family having s Sarcoma was unbelievably rare; I knew byy instinct what it was. I aggressively pushed for a GYN Surgical Oncologist to perform my operation. I saved my life. Had it been drained through my vagina (as my original GYN proposed) it would have spread everywhere.
    From there I went to get pathology done: at MGH I had Leiomyosarcoma, but at DFCI I had Undifferentiated Spindle Cell Sarcoma. I had no literature to read as well – very daunting, huh?
    Your suggestions are all excellent – my favorite: working as a team with your docs and picking the “best” for you. Oncologists are some of the most wonderful and kind people I have ever met.
    My tumor was in a “potentially” very embarrassing location: on my Mons Pubis – the “lady parts”. In order for me to cope with all the medical staff examining that area, I decided I’d have to use humor. I named it: “The Red Vag of Courage” amongst many, many other equally absurd titles:) Luckily, my doctors joined in and laughed as well. That definitely made me feel like I could trust them and I felt less like just a patient in their eyes.
    I’m now very fortunate to be clean 2 years out from Radiation and 3 operations! I am also on the board of Patients and families at MGH. I would love to swap “war stories” with you. It’s so rare to ever even meet anyone else with Sarcoma. I agree that it’s extremely important to give voices to our experiences…you go girrrrrrl!

    • I have serched for someone that knows about Leiomysarcoma, I have Primary Venous Leiomysarcoma. It is in my right iliac vein and it is so hard not knowing anyone who had even heard of it! We do feel lonely but on the other hand are thankful that not many people get these cancers. I am so glad to hear uplifting information here on this page! I am about to undergo surgery to remove the section of the iliac vein effected, the right side of my pelvic bone, part of my right hip, my right ovary and possibly my uterus. I under went 25 rounds of Proton Radation a month ago and awaiting surgery very soon to hopefully be 100% cancer free after the surgery. Thank you for sharing your stories everyone!

  8. Thank you for sharing your story. I would also let people know when it started, what the symptoms are. The cancer may be rare because people never get diagnosed with it or rather misdiagnosed in some cases. Tell your story on as many blogs, cancer blogs. See if there is a common denominator you and someone else may have with the same diagnoses. Is it environmental, genetic? My God my head spins when I think of ALL the different types of cancer. I’m sure you’re a fighter and you are doing your due diligence. There’s so much we don’t know because it goes unreported because (not you) some people take a different path. The path of least resistance and surrender. Don’t ever stop that search for the answers. Don’t ever think you’re alone. You have so many, an army of people working day and night for a cure. Some meant for another cancer may just be the one for you Becky. Just keep sharing your story and symptoms. Maybe a doctor somewhere has a patient with similar symptoms. Dana Farber is the coat of armor that will protect and serve you. Be well Becky.

  9. 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.

  10. I liked the tips, but I wish this article had clarified the description of aggressive angiomyxoma as a sarcoma. I trust the excellent pathologists at DFCI, but people reading this may want to know that some angiomyxoma is not classified as a cancer.

    I skimmed Becky’s blog and I saw that she got hormone therapy. In that way, she might have been able to connect with other women who get similar treatment, such as those with endometrial stromal sarcoma.

    Nikki, I’m a 13-year survivor of metastatic leiomyosarcoma that started in my vagina. I wrote a humorous story of my experiences here: http://sarcomaalliance.org/stories/suzie_siegel/ If you’d like to chat, you can reach me at suziesiegel@tampabay.rr.com

    You probably know by now that your two diagnoses are very close. Pathologists at three hospitals looked at my tumor before deciding on LMS. I’ve had 4 major abdominal surgeries, 1 lung surgery, pelvic radiation and a year of chemo. I served on the board of the nonprofit Sarcoma Alliance 2008-2013. The Alliance runs a Facebook page for support at: https://www.facebook.com/groups/9628193967/?fref=ts

  11. 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

  12. Thank you for sharing your story. I would also let people know when it started, what the symptoms are. The cancer may be rare because people never get diagnosed with it or rather misdiagnosed in some cases. Tell your story on as many blogs, cancer blogs. See if there is a common denominator you and someone else may have with the same diagnoses. Is it environmental, genetic? My God my head spins when I think of ALL the different types of cancer. I’m sure you’re a fighter and you are doing your due diligence. There’s so much we don’t know because it goes unreported because (not you) some people take a different path. The path of least resistance and surrender. Don’t ever stop that search for the answers. Don’t ever think you’re alone. You have so many, an army of people working day and night for a cure. Some meant for another cancer may just be the one for you Becky. Just keep sharing your story and symptoms. Maybe a doctor somewhere has a patient with similar symptoms. Dana Farber is the coat of armor that will protect and serve you. Be well Becky.

  13. Becky, you ROCK! I’m SO happy to hear that you have battled through this awful diagnosis! Yea!
    I was also diagnosed with Sarcoma (which is a rare enough Cancer) in 2013. I had actually discovered the tumor myself and despite the fact that my Gyneocologist absolutely was certain it was just a cyst, I my father had Rhabdomyosarcoma when I was younger. Even though having 2 people in the same nuclear family having s Sarcoma was unbelievably rare; I knew byy instinct what it was. I aggressively pushed for a GYN Surgical Oncologist to perform my operation. I saved my life. Had it been drained through my vagina (as my original GYN proposed) it would have spread everywhere.
    From there I went to get pathology done: at MGH I had Leiomyosarcoma, but at DFCI I had Undifferentiated Spindle Cell Sarcoma. I had no literature to read as well – very daunting, huh?
    Your suggestions are all excellent – my favorite: working as a team with your docs and picking the “best” for you. Oncologists are some of the most wonderful and kind people I have ever met.
    My tumor was in a “potentially” very embarrassing location: on my Mons Pubis – the “lady parts”. In order for me to cope with all the medical staff examining that area, I decided I’d have to use humor. I named it: “The Red Vag of Courage” amongst many, many other equally absurd titles:) Luckily, my doctors joined in and laughed as well. That definitely made me feel like I could trust them and I felt less like just a patient in their eyes.
    I’m now very fortunate to be clean 2 years out from Radiation and 3 operations! I am also on the board of Patients and families at MGH. I would love to swap “war stories” with you. It’s so rare to ever even meet anyone else with Sarcoma. I agree that it’s extremely important to give voices to our experiences…you go girrrrrrl!

    1. I have serched for someone that knows about Leiomysarcoma, I have Primary Venous Leiomysarcoma. It is in my right iliac vein and it is so hard not knowing anyone who had even heard of it! We do feel lonely but on the other hand are thankful that not many people get these cancers. I am so glad to hear uplifting information here on this page! I am about to undergo surgery to remove the section of the iliac vein effected, the right side of my pelvic bone, part of my right hip, my right ovary and possibly my uterus. I under went 25 rounds of Proton Radation a month ago and awaiting surgery very soon to hopefully be 100% cancer free after the surgery. Thank you for sharing your stories everyone!

  14. Becky I’m so thankful to have you as a part of our AA family! You are such a strong woman and an inspiration to us all to fight for our rights as patients.

  15. My husband has liposarcoma. He was diagnosed in 2014. His first tumor was in his leg, then the lung and the pelvis. He’s had surgery and has just completed 12 more rounds of radiation on the lungs and pelvis. I wish we knew more about this liposarcoma and somewhere that specializes in it. We are at Shands Davis cancer center in fla.

    1. Have you heard of Proton Radation? This is what I was treated with and I am about to have surgery to have the tumor called Primary Venous Leiomysarcoma removed from my iliac vein in my right leg as well as my right pelvic bone and part of my right hip. Good luck!

  16. 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.

Comments are closed.

Make An Appointment

For adults: 877-960-1562

Quick access: Appointments as soon as the next day for new adult patients

For children: 888-733-4662

All content in these blogs is provided by independent writers and does not represent the opinions or advice of Dana-Farber Cancer Institute or its partners.

Latest Tweets

Dana-Farber @danafarber
Dana-Farber #researchers have shown that clonal hematopoiesis of indeterminate potential (CHIP) - the presence of s… https://t.co/ZlmXSeyKfZ
Dana-Farber @danafarber
CRISPR, a powerful new tool for editing the #DNA instruction manual in animals and humans, is proving a boon to… https://t.co/pCzS3riHPS

Republish our posts on your blog

Interested in sharing one of our stories on your blog? Feel free to republish this content! We just ask that you credit Dana-Farber, link to the original article, and refrain from making edits that change the original context. Questions? Email the editors at insight_blog@dfci.harvard.edu.