DESCRIPTION
Sarcoma is a cancer that originates as a tumor in bones and soft tissues. It can be spotted in ligaments, muscle, fat and skin, as well as in bones. Mandy Basson says there are approximately 175 sub-types of sarcoma. Some are benign, some intermediate, but those that are malignant that in most cases, are particularly aggressive.
Mandy’s daughter, Abbie, was 17 in 2009 when she was diagnosed with Ewing’s Sarcoma. At first, she felt uncomfortable from back pain, then woke up one night when the pain became extreme. She took herself to her general practitioner. After undergoing a CT scan, and its results were known, Abbie was asked to return immediately for a surgical procedure. Following the surgery, Abbie learned she had Stage IV metastatic bone sarcoma, also known as Ewing’s Sarcoma. There was a four-week gap between diagnosis and when she began treatment. By that time, the cancer had spread all over her body.
Sarcoma is generally thought as a young person’s disease, and as such, Mandy deals with lots of young people. She emphasizes to them that as soon as they sense something wrong to get to a doctor. This, says Mandy, is not always easy to accomplish because so many young people feel a sense of invincibility and are hesitant to be seen by a doctor.
Mandy Basson says Sock It To Sarcoma was inspired by Abbie, and that she, Mandy, is merely carrying forward Mandy’s idea. Research regarding sarcoma doesn’t get anywhere near the funding that other, more high-profile cancers get; as such, Sock It To Sarcoma was initially established to gain funding for sarcoma-related research. Since its inception, the organization has expanded its scope. It has various support groups and a monthly on-line chat for those diagnosed with sarcoma. The chat’s participants come from all over the world.
By way of advice, Mandy says when seeking a care team to make sure to locate one that specializes in sarcoma. She says too many times those diagnosed with sarcoma have gone to a non-specialist and that the tumor has not been treated in the best possible way. She also says to anyone facing a sarcoma diagnosis to take each day one at a time.
Additional Resources:
Support Group:
Sock It To Sarcoma; https://www.sockittosarcoma.org
TRANSCRIPT
Bruce Morton: The disease sarcoma comes in many forms. Our guest on this episode cared for a daughter who passed away from a diagnosis of Ewing’s Sarcoma, and now our guest spearheads the fight against sarcoma. She is Mandy Basson of Perth, Australia. This is the Cancer Interviews podcast, and I am your host, Bruce Morton. Now it’s time to hear Mandy’s story, and Mandy, welcome to Cancer Interviews.
Mandy Basson: Thank you very much for having me today.
BM: Mandy, help us out. For those of us who have never been to Australia or those who have, but have never been to Perth or Western Australia, what are we missing?
MB: At the moment, you are missing some very hot weather. Western Australia, we are probably classified as one of the remotest cities, certainly in Australia. It is a huge territory in Western Australia and Perth is down in sort of the southwest. We have got a whole range of landscapes and scenery. We have got the tropical climate, then we go down to the south where we have the wineries and the lush landscapes as well down there and the oceans of course. We have got the beaches, which have a few sharks that pop up every now and again, which cause massive angst amongst our surfers, so that’s our part of the world.
BM: First off, Mandy, let’s define terms. Just what is sarcoma and how many types of it are there?
MB: Sarcoma are tumors that arise in primary bone and soft tissues, which are the connective tissues which join the body together. So, things like muscles, fat, ligaments, skin, as well as the bone. For a lot of people, they have heard of bone tumors as rising as metastatic from other cancers. The sarcoma is very different. They are tumors that arise in the bones themselves as the primary, not as a metastatic; so, if you have a metastatic tumor, that is not a sarcoma. There are 175 sub-types. Some of them are benign, some of them are intermediate, but those that are malignant are particularly aggressive in most cases. Approximately 30 are bone tumor classifications and the rest are soft tissue tumors and there are variants that don’t yet have a name.
BM: The unfortunate connective tissue between you and sarcoma is tied to your daughter, Abbie, and her diagnosis of Ewing’s Sarcoma. If you would, tell us Abbie’s story.
MB: Abbie was 17 when she was first diagnosed in May 2009. She was in her first semester of university. She was studying a double major in psychology at University of Western Australia. As most students do, she had a part time job. She reported to me that she was struggling a bit with her back and feeling very uncomfortable. She was finding it hard to sit down for long periods of time, and at first thought it was just some kind of back injury. She played volleyball, she played netball, she was a swimmer, an active teenager. It wasn’t until she woke up one night in extreme pain that she said this just wasn’t normal. Being a very independent young woman, she took herself to the GP. We were very fortunate. She had a GP that took her seriously and didn’t dismiss her as neurotic or female. He actually decided he was going to do some investigation and brought her in for an x-ray. When she came back for the results of the x-ray, he asked if she had had a car accident. He said it looks like there is a bit of scar tissue in her back. She said no she didn’t have anything like that. He said just to be on the safe side, he was going to send me out for a CT scan. She went off for a CT scan. It was a Thursday morning. She was due to go to university. She didn’t have a car, so I drove her so she could get the scan, then to the train so she could go to university. I now regret saying as she got on the train, I said all this seems pretty harmless. It is not as though you have anything like cancer. I soon got a phone call, and Abbie said her GP just called her to say she has to go in for surgery. The doctor was going on holiday, but won’t leave until seeing the results of the surgery. My heart sunk then because I have been involved with the medical field long enough to know that no GP calls you back urgently like that unless something is wrong. We went back to the GP. She went in on her own, but she came out and I was invited to go back in at the request of both she and the GP to hear that she had cancer. It was bone sarcoma. They weren’t sure which one at that point and the following day, she went straight in to see the surgeons. It was that quick. That arranged for biopsies, etc., etc. Fundamentally within four weeks of going to first GP, she was in treatment.
BM: Ewing’s Sarcoma and when it was caught. Given the diagnosis and when it was diagnosed, was Abbie positioned for recovery?
MB: Absolutely not. I think this is why I am so passionate about empowering people to present to GPs when they feel something is wrong. Abbie presented pretty much four weeks before she began treatment. She was Stage IV metastatic when the cancer spread throughout her body. When you think about that, that is a very rapid spread of the cancer. All medical staff were very upbeat and assured us they would do everything they could. We were told Abbie had something like a 17 percent chance of surviving five years when she was diagnosed.
BM: But as she went through this, Abbie was a portrait of courage, yes?
MB: She would hate to hear you say that. She believed very strongly that courage is something you take on because you have a choice. She said she never had a choice because if it happened, I would have to deal with it. She said she wasn’t brave. She was just doing what she had to do. I have spoken to a lot of young people diagnosed with sarcoma and they have said the same thing. Sometimes telling people they are courageous and brave actually makes it harder for them. They then feel like they have to present a stronger front when really they are quite vulnerable underneath. So, I think again, positions I take as an advocate for people being diagnosed with sarcoma is to try to empower them in how they present and recognizing that they have huge challenges and how amazing they are to get through them. I try to avoid some of the terminology we so often use, like brave, courageous, battle, fight, some of those things, because it puts you in a win-loss position. It’s not their choice. They haven’t gone into it with that point of view. Abbie was very pragmatic. She wanted to be a forensic psychologist. That was her career plan. She was always investigating things and looking at how she could problem-solve, so she did all her research on credible sites, and we avoided Dr. Google and the various scare sites. She looked at those trusted sites and found out what she was dealing with. We were also lucky because so many doctors have never heard of sarcoma, but ours did and Abbie was in good hands. Abbie was prepared, she was informed, she always took choices supported by us in a position of information and knowledge.
BM: Do you think that for the duration of her journey that she approached it in the very best way she could, given the circumstances?
MB: Totally. She wouldn’t say she was brave. I was awestruck by how she handled everything. I am with all of the young people I have met along this way. For young people I think it is particularly hard. Each different age demographic has its own challenge. Sarcoma is thought of as a childhood cancer, and we have had changes in the definition of what a childhood cancer is, particularly in Australia where we used to define childhood cancer as between the ages of zero and eighteen. Technically when you are looking at data, it is collected at zero to fourteen, that the adolescent and young adult age group is fourteen to twenty-five, then the adult demographic is beyond that. There are different age group definitions in different countries, which can present an obstacle for research. Having said that, there are more adults diagnosed with sarcoma than there are children, but the survival rate for adolescents and children is significantly lower.
BM: We’re confident you will be able to learn some tips and tools to help you through your cancer journey, but first we’d like to invite you to give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified the next time we release an interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Mandy, it was Abbie’s journey that inspired you to form your own support group. The inspiration was one thing, but doing what needed to be done to get it off the ground was another. What was involved?
MB: First off, I should say that Sock It To Sarcoma was all about Abbie. She actually came up with the idea, she came up with the plan, so I am merely the extra pair of hands that now carries it on because she is not in a position to do so. It came about because when she was doing her research and investigation into what was available for people with sarcoma, she discovered particularly in Western Australia and Australia in general, there was virtually nothing in the way of support organizations for people who had a sarcoma diagnosis unlike people who have received a diagnosis of breast cancer or some of the more common cancers. She said that is just not fair. Why is it because our cancer is rarer we should be seen as ‘second class’ and we don’t have the same opportunities. That also translates to opportunities for clinical trials, opportunities for new information, opportunities for support. Her goal was to change that, and that was why she came up with Sock It To Sarcoma. It specifically started out in Western Australia to fund research, to keep some of the really bright minds she had met at university to encourage them to look into sarcoma research, and significantly, to generate awareness around the symptoms and the need for early diagnosis for sarcoma because that’s why so many people have less chance for survival because they are diagnosed so much later in the trajectory of the disease. Our web address is www.sockittosarcoma.org.au
BM: You have told us about many of the things that Sock It To Sarcoma does, but if somebody goes to the website, what can Sock It To Sarcoma do for them?
MB: We do have online support groups, so if somebody wanted to join those, they are very welcome to do so. We have a private Facebook group for people who have been diagnosed with sarcoma. We do have a number of people from the States who are already a part of that group. We also have an online-facilitated support group where we encourage the opportunity for people to connect online to have a chat to talk about their circumstances, share and receive support, it’s a very mutual thing. We have them monthly. We understand how important it is for people to have a community. In Western Australia, this is important because ours is such a large territory. It’s a way of helping people connect with others who are on a similar pathway. There’s a whole world of difference between going to a general group of people who have had a cancer diagnosis, and those dealing with sarcoma. It makes such a difference to know there are people out there who are familiar with your sarcoma experience. It immediately opens a door, it establishes a shared life connection.
BM: From a distance, sarcoma strikes me as one of the cancers that would fall under the category of rare cancers. Against that backdrop, does sarcoma’s rare cancer status present obstacles where attention and funding are concerned?
MB: It is incredibly difficult. I think in Australia there has been a significant push. We are very fortunate in that we have, over a period of time, a government, and some different organizations that have come together to recognize that rare cancers need to have greater funding and greater opportunity. So, there has been a shift in the Australian landscape to try and address this. You are absolutely correct. Rare cancers do get significantly less share of the pie, in terms of research funding and treatment funding because one of the debates that is going on at the moment is about gnomic testing of rare cancers and how an important role that can play in the diagnosis and option for treatment, and we still haven’t got to the point yet which I would love to see that gnomic testing being an immediate option for our entire sarcoma community once they receive a diagnosis. Currently we have a fantastic program for pediatric sarcomas, in fact all childhood cancers in Australia whereby the governments have funded for every childhood sarcoma with cancer to receive gnomic testing and profiling at the point of diagnosis. Unfortunately, once you move into the adult system, that’s no longer an option and very often you have to go through first-line therapy and fail that before you recommended for a clinical trial or for gnomic testing. What that means is you are behind the eight ball because some of the research we have is that sarcoma research would definitely benefit from having its markers looked at and then we go to the challenge of being able to access trial drugs that are going to be appropriate for those markers that are identified. It is a slow work in progress. There isn’t a push, but for those people that are currently going through the sarcoma process, it can be very challenging accessing clinical trials and what I find is very hard is that for some people it is down to they can access treatment if they have the ability to pay. This is something that happens a lot in the States that private insurance companies paying for drugs can be a real challenge, and we have to ask ourselves if health is a right. Should we have a right to access good quality health or does it depend on our ability to pay? I think when one has a cancer diagnosis, for me it’s very hard to see someone who potentially could have their life extended by a certain drug, but they cannot access it because they cannot afford it.
BM: Mandy, we are going to wrap up now and when we wrap up we pretty much close with the same question. Imagine that you have encountered somebody one on one, and you learn this person has just been diagnosed with a form of sarcoma. This person likely has a lot of questions, and you could have a lot of answers, but if there is one point you would want to be sure to get across to that person, one thing you want to make sure they remember, what would it be?
MB: I think I would say to take every day as it comes. You are unique, your tumor is unique. Don’t look for others. Take it a day at a time. Control what you can control and trust in your specialists. The majority of them are excellent, as long as you have a sarcoma expert. That’s a critical thing which I think. Sarcoma needs to be treated in a specialist center where there are experts to understand the management of primary bone and soft tissue tumors. If you go to a non-specialist, there are likelihoods that your tumor will not be treated in the best possible way, so having someone who understands sarcoma and is experienced in it is critical to the best outcomes for any sarcoma diagnosis, so make sure you’re in the right hands, take every day as it comes and never ever lose hope because you never know what tomorrow will bring, and always smell the roses while you are doing it. Live every day it is your last day, but of course, it isn’t. Enjoy it. Be positive because there is always something around the corner and even then you can have silver linings. That’s why I am so gifted. I have a living testimonial and a living opportunity to keep my daughter with me on all things that I do. How fortunate am I. So, good things can still come out of the worst possible situations that we experience.
BM: Our guest has been Mandy Basson of Perth, Australia. She is with Sock It To Sarcoma. Its web address is www.sockittosarcoma.org.au. Thanks so much for your time. Thanks so much for a great deal of advice that can help someone in their sarcoma journey.
MB: Thank you very much for the opportunity. It’s been my pleasure to join you.
BM: And as we conclude we will remind you that if you or a loved one are on a cancer journey, you are not alone. There are people like Mandy, organizations like Sock It To Sarcoma that are there to help. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
Sock It To Sarcoma: www.sockittosarcoma.org.au
SHOW NOTES
TITLE: Mandy Basson, Sarcoma Patient Advocate – Perth, Australia
After Mandy Basson’s teenager passed away from Ewing’s Sarcoma, she was inspired to establish a support group for a rare cancer that has at least 175 variations. This is her story.
Additional Resources:
Support Group: Sock It To Sarcoma www.sockittosarcoma.org.au
01:59 Mandy defines sarcoma.
03:34 Recalls her daughter Abbie’s sarcoma diagnosis.
07:04 Mandy is asked if after learning of her diagnosis, Abbie was well-positioned for recovery.
12:45 Says more adults than children are diagnosed with sarcoma.
14:45 Describes the establishment of Sock It To Sarcoma.
17:09 Lists the benefits of the Sock It To Sarcoma website.
19:36 Mandy says because sarcoma is a rare disease, getting necessary attention and funding is difficult.
23:51 Says it is important for a sarcoma patient to be seen by a sarcoma specialist.
KEYWORDS (tags):
sarcoma
bruce morton
bone tumor
cancer interviews
mandy basson
bone sarcoma
jim foster
gnomic testing
ewing’s sarcoma
Comments