Teenage cancer survivor. AMA.

[mishfish]

As the title says. I was diagnosed with cancer before my 18th birthday. Ask me anything!

What type of cancer did you have? What was your prognosis on diagnosis?
Was it primary or secondary?
Did your friends stand by you during treatment?
Has it affected your fertility?
Has it had any lasting impact on your health or mobility?
Are you at high risk of it returning?
How often does it come up in general conversation ?

Quite a few questions there!
Have a vested interest as a cancer patient myself

Are you ok?

What type of cancer did you have? What was your prognosis on diagnosis?

Osteosarcoma (bone cancer)

Was it primary or secondary?

Primary

Did your friends stand by you during treatment?

Most no, and would blank me on the steeet if they saw me. Some popped out of the woodwork clearly just for gossip/ morbid curiosity. I was trolled on two instances. One friend was clearly only in it for themselves support wise and another 2 were wonderfully supportive

Has it affected your fertility?

Not at all, I was pregnant 15 months after I finished treatment, and still a teenager, much to my mothers horror. I have 3. No struggle conceiving

Has it had any lasting impact on your health or mobility?

I catch every bug going and caugh a lot. I had to have a distal femoral replacement (knee and femur replacement) and 83% of my ham string removed. Some days I can’t walk at all. Most of the time I have a limp. My tumor was mm’s from an artery though so it’s lucky I didn’t lose my leg (would have had to have had a hind quarter amputation)

Are you at high risk of it returning?

There was a 50/50 chance of surviving 5 years (I’m 11 years this year)

How often does it come up in general conversation ?

Not often, my scar is very noticeable- particularly in the summer but people are usually too polite to mention it

are you ok?

I’m not at risk of the cancer returning though i still have issues with my prosthesis

Not ham string- quadricep sorry! Don’t know where ham string came from

Do you talk openly with your children about cancer?
Do you feel that charity’s such as cancer research are spending the money given to them wisely?

Do you have nightmares about the cancer?

I’m watching this with interest - I was diagnosed at 21 and some of the questions are making me smile (as odd as it sounds).

Glad to hear you’re well now.

Do you talk openly with your children about cancer?

My eldest, yes- but I always make sure to reassure him that I am fine now, and it was incredibly rare, I was very lucky and that science, medicine and the NHS are all so wonderful

Do you feel that charity’s such as cancer research are spending the money given to them wisely

I wouldn’t be able to comment on what they spend their money on. Bone cancer receives very very little funding from cancer research which I think it a shame, particularly as the treatment is so so brutal and it is a cancer that effects predominantly children, teenagers and young adults

Do you have nightmares about the cancer?

I used to. And I used to be sobbing at the smallest unexpected lump and bump (I still freak out) but I’m much better at controlling my anxiety now.

@helloamingogo did you have osteosarcoma too?

Glad you're ok now. What were your symptoms? Do you have any health anxiety? Has it changed your career/life path?

I’m glad you’re okay. I hope you’re always ok.

The antlers wrote an album about a doctor who fell in love with a bone cancer patient. It makes me cry.

No, I had a germ cell tumour so another of the weird, rare ones.

It was the question about dreaming about it that made me smile. I never thought about it but I do dream about it - but it’s not in a scary way, it’s just like any other experience. I still dream about school and I guess see them on equal footing if that makes sense.

Have you ever had difficulties at work as a result of lasting issues caused by cancer?

@itscaaaaaminhome one of my friends in hospitals parents, by way of apology for stealing my sandwich from the fridge (I was furious- roid rage) bought me a book- a fault in our stars 😂

had to have a distal femoral replacement (knee and femur replacement) and 83% of my ham string removed. Some days I can’t walk at all. Most of the time I have a limp.

I have had a proximal femoral replacement (hip and femur) because of cancer in my femur.

The femur is a big bone to have replaced.

It doesn't surprise me about your friends' reactions. I found very similar as an adult patient.

People are always surprised when I say that, but it's so true.

If anyone reading this has a friend with cancer and you don't know how to react, then FFS be a true friend and stand by that person.

I wanted to ask about the fault in our stars but didn’t dare.

The album I spoke about isn’t like that. It’s not romantic. Just painful.

How did you get diagnosed? Unrelenting pain leading eventually to an x-ray??

Do you drink or smoke now?

They stole a young patient's food?! That's really shocking.

So glad you've come through this, OP.

Sorry if this is a thick question - I don’t understand your prosthesis comment. Is it the replaced bit in your knee? Or do you have an external prosthesis?

Glad you're ok now. What were your symptoms? Do you have any health anxiety? Has it changed your career/life path?

Thank you. I was exhausted. I would wake up, go to work, come home and go to bed. Completely shattered. I had had a constant dull ache for a year or so and the area was swollen and warm. The aching would often wake me up at night. One morning I woke up and my leg was stuck at an angle and I could not put any weight on it, it was completely swollen on the side and visibly red. It took a few goes at the drs and hospital before I had an x ray which is where the tumour presented itself.

I’m actually ok health anxiety wise. I was awful for the first few years but am now able to reason with myself and watchful wait before going to the drs.

Career wise it was actually a small blessing in disguise. I realised I couldn’t commit to commuting due to the pain and being a young, single, disabled mum with my qualifications put me in a very vulnerable position, so I studied to become a certified bookkeeper, set up my own practice with my own clients who keep me busy for about 18 hours a week, and am now 4 exams away from finishing my AAT Professional Diploma in Accounting. I don’t think I would have done this without my vulnerability motivating me.

It was the question about dreaming about it that made me smile. I never thought about it but I do dream about it -

When I dream, i walk normally in my dreams and sometimes I even run. This despite the fact that I walk with a limp and cannot run at all. Do you dream as an able bodied person as well OP?

*No, I had a germ cell tumour so another of the weird, rare ones.

It was the question about dreaming about it that made me smile. I never thought about it but I do dream about it - but it’s not in a scary way, it’s just like any other experience. I still dream about school and I guess see them on equal footing if that makes sense.

Have you ever had difficulties at work as a result of lasting issues caused by cancer?*

Sometimes I dream I’m back to being bald and freak out temporarily! Are you ok now?

I missed this and answers another question where I spoke about my career

Helloflamingo it's a metal prosthesis inside the leg that replaces the bottom part of the femur and the knee to make it all attach up to the other bones. Then they stitch you up and you're left with a scar about ten inches long. It's an expensive bit of kit.