Partner - 30 years old - likely a rare pleural sarcoma

Hi 

I've kept an eye on this forum for a number of years. Partly due to my own cancer scars (turned out to be nothing) and the fact my father has lived with prostate cancer for a number of years now. 

You are good people. From those diagnosed to family members, I've seen so many posts filled with grace and love in a way I couldn't even summon on my best days. I send you all "internet stranger" love.

But unfortunately, the time has come to make my own post. 

My partner, my fiancé, my entire world since we were 14, has been told she has cancer at 30 years old. 

My partner received a diagnosis of sarcoma, likely liposarcoma (to be confirmed) on Tuesday.

We don't know for sure yet whether it is primary or secondary, but the surgeons and consultants are currently working on the idea that this is a rare manifestation of sarcoma in the pleura. 

5 weeks ago she was doing heavy work around the house and hiking up a moorland, without a bother in the world. 

fAew days later she suddenly had back/shoulder/chest and arm pain. We rushed to A&E thinking heart problems, only for them to find a large left pleural effusion and a white out on x-ray, initially suspected to be a localised fluid buildup because of how sarcoma tumours are often quite low density. Unfortunately they tried to take fluid samples for testing, but in hindsight we now know they were just stabbing her tumour unfortunately, which was very painful for her. 

We were referred to another hospital 5 days later where a wonderful consultant said he wanted this seen to ASAP, and walked up to a lung surgery ward in person to secure a bed and slot for surgery.

She had surgery the next day (12-13 or so days after it all started). Chest drain, part of her lung removed, and discovery of a suspected "bloody and crumbly" tumor mass which was almost all removed through VATS, but not in full due to being "close to an artery" and the surgeons "not really knowing what they are dealing with yet"

750-800ml of liquid drained from her, and I slept in hospital for 2 nights because I couldn't go back home and leave her.  Remarkably she was home within 3 days. She recovered extremely well from surgery and was out breathing my asthmatic self within 5 days!

2 week wait and then we got the biospy results. 

We now await PET scans to know if this is primary or secondary, or whether it has spread, lung function tests and MDT meeting. It's all moving very quickly, which is reassuring.

The surgeon is "hopeful" if the cancer turns out to be a rare case of primary pleura sarcoma that he can operate with full removal. They are talking about being "aggressive with treatment" which is scary and reassuring in equal measure.

My partner is a particularly brave, stubborn and headstrong women - I'd argue she's dealing with this diagnosis better than me if anything. So at least we know she's got a good start should she decide to fight this aggressively.

I don't really know what I'm hoping to get out of this post, other than getting this off my mind. I feel I need to "tell someone" even if no one is listening, if that makes sense. 

Lots of love, luck and care to you all. Thank you. 

Parents
  • I think that it can help a lot  to "tell someone" and, yes, it makes a lot of sense. I was told at the end of June something about a suspicion of sarcoma. After scans and biopsies, I will be told results tomorrow at my local hospital and then on Friday at a well known cancer hospital in London. Keep telling us how things are. We shall read and we shall support you.

  • Hi Mary 

    Thank you for replying. It means the world to me.

    You are absolutely right, while nothing can take away the terrible feelings it is strangely therapeutic to talk to people (even internet strangers). 

    I was actually keeping an eye on your main post - and I am deeply saddened to hear about your diagnosis and journey this far. 

    I know it is of little value at a time like this - but I want to let you know that you are in my thoughts tonight and will be for many more nights to come. 

    I hope the follow on appointment on Friday goes well. 

    I truly wish you all the best, and of course I offer you continued support in whatever way I can be of use. 

Reply
  • Hi Mary 

    Thank you for replying. It means the world to me.

    You are absolutely right, while nothing can take away the terrible feelings it is strangely therapeutic to talk to people (even internet strangers). 

    I was actually keeping an eye on your main post - and I am deeply saddened to hear about your diagnosis and journey this far. 

    I know it is of little value at a time like this - but I want to let you know that you are in my thoughts tonight and will be for many more nights to come. 

    I hope the follow on appointment on Friday goes well. 

    I truly wish you all the best, and of course I offer you continued support in whatever way I can be of use. 

Children