Sarcoma....anyone know about this ? Blindsided by friend's news

[Aintgointogoa]

Hullo
as title says, I know nothing (much) about sarcoma and when my very good friend confided in me tonight that he has one in his arm and it's growing, and he is in agony for about four hours every night (won't use pain relief) I was dumbstruck. He's so young (40), fit, a beautiful man with a heart as big as a house, looking after his cancer survivor mum and sister with special needs. They are his main concern. I just looked at him jaw to the floor. He can't die. No, no, no, no. He is so calm and collected about it and obviously I have to step up. I didn't cry until he left. Straight onto dr. google obvs. Freaked out.
Can anyone share any experiences with this ? Is there any hope, could he beat it ? He has access to excellent health care where we are. He is very well informed of course but I am just....fucking scared. I love him so much. He never goes a week without shooting me a message of support, love, silly joke. I am relieved he has a really supportive partner. But outcomes ??? Any guidance very gratefully received. Get me away from Google ha,

I think like with most cancers there's no definitive answer. You really need to speak to your friend & find out what his doctors have said about his condition.

You could get loads of anecdotal replies on here but they're not really going to answer your question

Now that you've had time to let the news sink in, speak to him, he's probably in shock at the moment too but he's the only person who can tell you what you need to know

I know a little from my dad having one in his leg last year. My dad has had a good outcome, he had radiotherapy and then surgery but no chemo. Surgery does involve a skin graft so that was quite full on.

He's well since then though and cancer free now, he's had no lasting impact. My dad was told that it's rare but very treatable. Feel free to ask any questions.

Wishing him and you the best outcome

Yes, I would stop googling. You don't mention the grade, stage or type (I appreciate he may not know yet awaiting biopsy or you may know but not want to share your friend's information). Sarcoma is a term that covers a lot of ground many can be very treatable depending on the aforementioned factors.

This is a shit part of cancer diagnosis, between something being found and action being taken. If you can visit in person it'll mean a lot. Show up and show you care, that's the main thing.

I am grateful for your calm and measured responses. He was also super calm and trying very hard not to alarm me ! (my older brother is currently in palliative care for cancer so just a matter of days) I look at him and see this beautiful person radiating love and I cannot believe he is being killed from inside his body !! WTF. Fuck cancer. But his consultant has said that probably his lower right arm from the elbow has to go. He is right handed and an architect/designer. Good grief how do people deal with this. And he hugs me and loves me as ever was. His partner is stoic.
Sorry. Rambling. Confused.

My one tiny bit of anecdotal input
Friend had next to a kidney. Was having an investigative op for suspected kidney cancer and the suspicious area was removed by kidney specialists rather than sarcoma specialists and then found to be sarcoma on removal and testing .
Referred to Marsden in London who specialise in sarcomas.
Scanned and found clear . Obviously they will monitor but fine now.
The explanation that most cancers affect an organ ( kidney, stomach, lungs etc ) but sarcomas are cancer of connective tissue helped me .

@Shitlord he told me tonight that he had pain in his right forearm 7 years ago !! But because he was always on computer with work he dismissed it. Like RSI. But I could see right away how swollen his arm is. Yes it is slow growing so far and he has specialists on it. He is being so brave and sunny as always. But I am glad he was honest after weeks of not meeting up. Now I know why. Feel like a right wimp. Life is so fragile. I have to be as brave as he is. And my bro too. Will stay off Google.

@whatwouldyoudoifisangoutofkey I just wish my brother had been within reach of Marsden but he lives in a very rural area …the kidney cancer took hold before any treatment could be administered in time to help.!It really is a lottery. But I am trying to get my head around sarcoma spreading through my friend’s arteries / connective tissue. I knowmy brother will probably be dead by the weekend. Godspeed. But my vibrant,powerhouse of love, friend ….I just can’t. It’s not fucking fair. But he has asked me to show up for his partner and mother who has battled cancer for 20 years without a hair out of place !!

I'm so sorry @Aintgointogoa ,I know from personal experience what a lottery it all is .
Even within a discipline in the same hospital there can be a lot of variation in how patients are responded to.
I hope your brother is at peace and had an easful passing.
Look after yourself , an anticipated death of still deeply shocking and traumatic.

Ps my understanding is that one of the things the Marsden specialises in is sarcomas.

I'm so sorry to hear about your brother and now this about your lovely friend. What a lot going on for you. I'd say try to manage everything in your mind step by step and not conflate the two in terms of jumping to worst case scenarios for your friend.

If his treatment plan is amputation then that obviously seems huge but if he hopefully recovers well from that then you know what? People adapt to their circumstances. I think an architect could continue to work in time. Obviously not saying I know what his outcomes will be or anything, just not to rush ahead.

You're not a wimp. You're going through so much and I'm glad you've posted on here xx

@whatwouldyoudoifisangoutofkey
@Shitlord

You are right, it's a double whammy with my brother 'disappearing rapidly over the Atlantic' and now with my dear funny friend who has been a rock, He has been to some very dark places given his difficult upbringing, but one of the first deeply personal things he told me was that he was going to survive in order to look after his mother and sister. And now this ! His sense of humour is indomitable and I couldn't cry in front of him and his partner last night. He was looking deep into my eyes when he told me and almost daring me to. Like, c'mon girl, what's the worst that could happen ?
I lurk a lot on mumsnet - am often aghast at the pile ons, but can't avert my gaze ha ha......but this is the first time I have really reached out for support, I was not expecting this - of course !! - and I am so so grateful for your kindness and like my brave friend, will keep calm and carry on.
I will update if anyone is vaguely invested or if anyone has anything to share. 🌈💐

@whatwouldyoudoifisangoutofkey unfortunately too late. My family are aghast at the lack of care and diligence, even tho he was assigned/outsourced to a Marsden specialist. Rural hospital, overwhelmed.
Where I live in Latin America the medical care is world class - if you pay for it (but still a fraction of US prices) So my friend doesn't need to go anywhere. And his kick ass mum has survived this long, she's not going to let him go without a fight! Putting my big girl mumsnet pants on. X

What type of sarcoma? There are many different types.

My older son had a sarcoma (it was one of the "good" ones). He is fine now.

@flossingtonbroadway thank you for sharing that ! Very happy your dad pulled through. I am doubtless locked into 'worst case scenario' mode due to my brother's decline, but I do need to hold onto the potential good outcomes as the most likely. He is so fit ! So young ! (40) He lights up the room when he walks into it. I am raging inside. I am 30 years older than he is, let it be me

@AskingForAFriend10 well I don't actually know ! He's just had a shit ton of tests. He's in agony every night for about 4 hours (his partner says it's intolerable but he won't use pain relief - A says it's only going to get worse and he may as well get used to it ?!) and now his right leg is flaring too.
I am so glad your son had this result, bless him.
i feel like I have wandered into an alien planet where there is only death and disease around me (dramatic, moi ?!)
Am currently counting my many blessings, including having my dearest A in my life,

I've been diagnosed with a sarcoma in my pelvis. Last year I had one in my womb! I'm fucking petrified, mainly because I've already got metastic breast cancer!

They are fuckers these sarcomas.

My mum tells me her hairdressers friend is on her fifth sarcoma!

I hope all goes well for your friend.

What's a good sarcoma? I've got one too, but they are talking chemo for me.

Have they tested you genetically?

Good sarcomas..not many. But some are less aggressive than others.

So sorry to read this. It’s scary and heartbreaking but the unknown is the worst part. Lots of advice will say don’t google but I felt well prepared when my grandma was diagnosed with Chondrosarcoma (cancer of the cartilage on her sternum) so it just depends on you and how you prefer to deal with things.

She had surgery to remove her ribs and sternum and had it all reconstructed by an amazing surgeon and is fit and well now- I’m just saying as her diagnosis was very bleak. It’s amazing what can be done.