Through all my cancer adventures thus far, I have had it all mapped out for me. I’ve been told what chemo I needed, what scans to have, what surgery would be done. Great. I’m not the expert, I don’t need to waste my precious energy and headspace on making these decisions, that’s what my medical professionals are for.
First, a call. The Oncologist would like to speak to you.
Her secretary on the other end of the line. A phone appointment was booked in. It wasn’t the Oncologist I’d had last time, it was someone I didn’t know. I looked her up online, it gave no real answers. I didn’t think I would be having any further treatment because they thought they got it all out. I was happy to have this booked in though, I wanted to hear what she thought.
Second, another call. The Oncologist would like to speak to you.
This time it was my darling surgeon, Deepti. They’d all been speaking about me in the MDT (multidisciplinary team) meeting between the Surgeons and Oncologists and everyone involved in my care. Cool, I like being spoken about. The Radiotherapy Oncologist had told them she wanted to offer me radiotherapy, but could not seem to tell them exactly where or why.
Deepti told me that radiotherapy would be likely to cause serious complications if done now, for example damaging my brain due to the surgery leaving it with little protection, and decreased options if I ever really needed them. But she said to listen to what the Oncologist had to say and hear her out. And that there was no need to decide in any hurry.
Third, a phone appointment. The Oncologist will see you now.
She prefaced the call by saying that there is no real evidence that radiotherapy has any effect on osteosarcoma, they just tend to offer it. I asked her where they would be targeting because from my understanding, it’s a targeted treatment – if there’s nothing there to see then it’s not of much use. She said ‘we’ll just sort of target everywhere. Anywhere that it might possibly come back.’
The side effects she listed were endless. Possible damage to remaining eye being a notable one. And for no obvious gain.
She said: There’s no evidence to show that radiotherapy will make any difference at this point.
But she would like to offer it anyway. They usually offer it when there are close margins (of less than 1-2cm) and mine were close.
‘Close? I thought they were huge margins?’
‘Oh no, they were close. Only 3mm.’
I madly flicked through my notes, travelling back through time. I’ve needed to somehow believe that this time will be different. My margins last time were reported as ‘several close margins of a few millimetres’ – meaning that there were only gaps of that size of healthy tissue cut out around the tumour. Only a tiny buffer. I needed to believe that this was the reason it had come back and this time would be different. But ‘a few mm’ doesn’t sound all that much worse than 3…
She told me to go away and decide within a week what I was going to do.
I had no idea how I was supposed to make that decision. So I did the only thing at my disposal, the thing I had been able to avoid doing all this time. I looked up papers, research, studies, I tried to understand what the science was. What I found was that no one seems to know much about Osteosarcoma. Especially when it comes back. Some studies have been done, but they’re sparse and don’t come to any real conclusions. The most useful information I could find is that surgery is the best option, surgery and chemotherapy is next best option. And radiotherapy is only really shown to help if they couldn’t cut it all out – if they couldn’t get clear margins around the tumour at all.
The other thing I couldn’t avoid seeing as I armed myself with this information was that all the papers showed how likely it was to keep coming back and how rubbish the survival rates are.
I felt the effects of the pandemic way of life that week. I had to sit with these thoughts, I needed to do this research, but I couldn’t step away from myself, from the situation. I couldn’t walk home from those appointments via a friend’s house for a bottle of wine and a debrief/distraction, like I had when I was re-diagnosed back in November. All I could do was have those dismal sounding survival rates and decisions rattling around in my head. Around and around and around.
Fourth, another call from Deepti. The relief when I heard her voice.
‘Ok,’ I said. ‘I need information. What were the margins. The Oncologist said they weren’t good. She said they needed to be 1-2cm and they weren’t.’
Of course, you can’t get 1-2cm clear space around the tumour when you cut it out where mine was. You would almost have to cut my entire head off. This, unfortunately, is one of the big struggles with why it tends to keep coming back.
That 1-2cm benchmark is for tumours in the leg. Places where it’s less likely to locally recur because the limb can be removed, and where radiotherapy won’t have such dire negative consequences.
She pulled out her notes. On one side the margins were 10mm. On the other side they were 7mm. This was an entirely different story from last time. The 3.1mm margin that the Oncologist had spoken about was the one by my skin. The most they could have done would have been a 3.4mm ‘closed’ margin and cut all my skin off. But that is obviously not an option. They went as close as possible, taking away all the adipose tissue behind and leaving the skin itself. I’m not saying that bone cancer can’t spread into skin but that seems like the absolute least of my worries.
Did the Oncologist not realise that the ‘close margin’ she spoke about was my skin?
Deepti continued. As far as we know, there is nothing to target. No residual cancer to be seen, no guarantee of where it would be unless it grows again. They checked the tumour they cut out. Twice. They checked all the margins, building as much confidence from it as there was possible to get.
If I had radiotherapy now and the cancer came back, I would severely limit my options in the future. I wouldn’t be able to have it then if I had it now. And that might be the time I really needed it, like if they weren’t able to cut it all out and there was something to target. Radiation damage would also make it a lot more difficult to cut out at all, or do any other future surgery. The potential of not being able to operate and having no treatment options if I need them is a terrifying prospect.
And for what? If I had it now to treat something that we can’t even see, and with no discernible chance of making a difference to whether it comes back or not, I’ll be signing my early death warrant myself if it does return. Surgery is the best defence against this damn thing. If I do radiotherapy now and it comes back, I’ll be in serious trouble.
One of my best mates is currently not in a great way, with no options left and having had to move back to Yorkshire to spend her days lying in her childhood bed, visits from the hospice nurses. She said ‘do not mess up your chance for options now, should there become a time you really need them. Especially when there’s no apparent reason to do so.’
She makes a compelling case.
I asked Deepti ‘if it does come back, will I regret deciding not to do radiotherapy now?’
She said no, it doesn’t work like that because radiotherapy isn’t likely to help now, but it may help in a different circumstance.
I realised in hindsight that although that was the question I needed to ask at the time, it was not actually the right one.
You all know me by now, I find the good points, the hope, the things I am grateful for.
Like how I am grateful that those scans were missed last year because the timing worked out exactly so that this recurrence was picked up. Even a month or so earlier, perhaps nothing would have shown on the scan and I would have been in a much worse position now.
I could choose other thoughts but they would not serve me. That’s not a way to live.
I know that if it does ever come back, which it either will or it won’t, I will be grateful that I didn’t squander my options now, before I actually needed them. I will need to have those options. I will need to know there is still hope. Right now there is hope because they got good margins. Now we just need to cross our fingers that we’re not here again in a few years.
With all the washiness of the Oncologist, Deepti was the closest to a definitive I could get. She said that they would absolutely support me in whatever decision that I made, but that they would not want me to have radiotherapy now. And you know how much I love and respect my surgeons. They are the ones who will need to keep coming to my aid should the future require it. It wouldn’t be right to hinder that. We’re in this together.
She also said there is no hurry to make a decision. Let’s get scans, let’s sit on it for a bit, see if anything tips the scales. I can’t imagine it will, but I feel much better about this than being rushed into making a decision, and one that doesn’t make a lot of sense. That even the Oncologist can’t tell me I should do.
I also asked the Oncologist about chemotherapy and immunotherapy. I just wanted to chat about them. But she didn’t know. She referred me to my original Oncologist who booked in a meeting.
Fifth, a call from my original Oncologist. The Oncologist will see you now.
‘Jen!!!!! How are you?!!!’
A smile spread across my face at the sound of his voice. I had spent every Monday with him back in 2017/18 as he prepared to fill me with cytotoxic drugs, then every 3 months after that. I knew him. I trusted him. We’d been through so much.
He talked me through everything. With osteosarcoma in the face, the greatest fear is local recurrence. The only thing they can think to offer for that is radiotherapy, though the likelihood of it helping isn’t promising, and appears to be very small at best. He echoed that if I have it now, options will be gone should I ever actually need them.
I can’t have the same Chemotherapy I had last time, I’ve had my life dose. Any of the other second-line (next option) treatments aren’t shown to be effective at the point of recurrence. The idea of chemotherapy is to halt any minuscule bits of cancer that have decided to go exploring the greater area of your body, in the hope it will prevent metastases, the most common of which is a spread to the lungs. There’s nothing ‘preventative’ to be done anymore, other than cutting it out.
In other countries like the US, they appear more likely to throw everything at you. Here it’s a more conservative approach because there’s no real proof that any of it helps with osteosarcoma. Surgery is the one. Only if surgery has not been successful do other options become more attractive.
It’s all fire fighting now. Perhaps no more fires will light, perhaps they will. The thing is being able to put them out if they do.
Immunotherapy trials have been carried out in Osteosarcoma, but they haven’t proven to be useful yet either.
I wanted to hug him. I didn’t expect him to offer me anything because I knew he had made the decision not to, based on all of his expertise. I just wanted to hear his thoughts and reasoning. Between him and Deepti, I have built a bit more confidence in it all.
As my dear friend in Yorkshire also said: ‘trust in yourself and your instincts because they’ve never let you down before.’
Trusting in myself, my Surgeons and my Oncologist is the only way forward.
Treatment and survival rates haven’t improved much in this cancer since the mid 1960s. It’s so rare, and funding goes to other cancers. But there’s always hope that the longer we can stay alive, the more chance of new treatments becoming available. At the moment the only one we know is going to make a difference at this point, is the surgery. Which was a success (at least as much as it could be).
I am a statistic, but statistics are not me. It’s been confronting to realise just how little is known about how to treat this cancer, the kind of information I’ve been able to stay away from up until now. But that also means that little is known about survival. The future is always unknown, no matter what we think we know. No matter what history dictates.
I am happy in my own understanding that things were different this time. The margins were bigger, more was taken. This is what was needed. Aside from the fact of it coming back being worrying, it gives me hope and peace of mind that there’s a greater chance of getting it all this time. And this is what I need to rest my thoughts on to help me sleep at night.
I knew I needed to draw a line under that week. I had to leave all the difficult thoughts there, put a lid on the box they were let out from. I couldn’t have avoided needing to find them, but I could avoid letting them continue to find me.
On the Saturday, I got up at 1am. It was my second favourite day of the year (after my birthday of course) – The Triple J Hottest 100. The biggest music democracy in the world. It’s run and hosted in Australia, hence the ridiculous time it started for me. And from then until about 11am I listened to music, had a zoom party with my parents and their neighbours-that-are-friends-that-are-family (as is tradition for us all to get together), watched them eat our Mexican food tradition (since I can’t munch, I lived vicariously), danced, laughed, complained about the songs I voted for not all getting in the countdown, and drank margaritas.
On the Sunday it snowed. I hadn’t been expecting it. I put on my Wellies, beanie, scarf and coat, and went out in it, crunching footsteps in the white streets. The snow so light it sat on leaves like candy floss, the early season daffodils resiliently standing still tall under the precarious layer collecting on top. Everyone was out for walks, making snowmen or throwing snowballs. Smiles on everyone’s faces, comments of happiness to each other as we passed in the streets. Collecting moments of pure joy, untainted by the past because after the snow we can be reborn.
There’s no skipping over the difficult things, sometimes they are a necessary part of life. If I hadn’t done the work myself I wouldn’t be informed enough to make the decisions I needed to. But we can make a conscious effort to put aside the things that don’t serve us, as opposed to dwelling on the unknown. And I can guarantee we’ll be better off for it.
And in the end, whatever decision you make is the right one, because it’s the one you make.
11 Comments Add yours
You’re so courageous, I am amazed at how you’re able to rationalise this situation like this… I don’t know what to say… but thank you for inspiring us on our own journey and I pray it all goes well for you 🙏🏼🙏🏼🙏🏼
Thank you so much!
You are such a special lady. I am blown away by how you are calmly and rationally marshalling your thoughts and making such important decisions. I am so glad you have your wonderful medical team that you know and who have your best interests at heart
I know there is a private either Facebook or Instagram group for those with rare cancers. Just if you ever felt you needed a bit of extra support. Dr Georgina Morgan who Is on IG set it up when she herself was diagnosed with a rare cancer
Take care and I’m glad you had a great Saturday with your family , friends and music !
Thank you so much for your kind words and for letting me know about the group!
I cannot tell you how relieved I was when I read that you spoke to Deepti again after the oncologist call. I am so glad you have someone on your team fighting for you! Big life decisions are difficult but when there’s science and margins and so many things that the normal person doesn’t understand, it can seem impossible.
I LOVE that you got up at 1am and listened to the Hottest 100 until 11am. It sounds wonderful. I’m not a Triple J listened (this will not shock you haha) but my Bro-in-Law had a party so I attended to swim in the pool and eat pizza.
Yes! I’m so glad to have her in my life. I think it would have been a very different story without her.
Hahaha I am proud that you were at least around the Hottest 100, even if not strictly by choice.
Dear Jen, I very sure you have made the right choice, and pray that you are at ease about it. Lots of love as always. John xx
Yes, I think you’re right 🙂 I’m feeling at peace with the decision, especially knowing it’s the ones my surgeons wanted me to make.
You are beautiful from inside and outside.
I truly admire you.You are true inspiration to many.I wish you great life with no more cancer,no more surgeries,no more chemo…You had your share( and more)..You dear dear beautiful soul,may your life be filled with health,love,joy,happiness,and may all your dreams come true.
Love and hugs!!
Thank you so much for your kind words! I appreciate this so much xx