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
  • Just a quick update 

    Short update - spoke to the oncologist today and he was pretty great. 

    Nothing really to add beyond what the surgeon has said, other than the fact he isn't necessarily worried about the rarity of the cancer. He's a specialist sarcoma oncologist and often sees patients with unusual presentations of sarcoma, so he's not necessarily alarmed by the rarity. Which is reassuring I guess. 

    Confirmed surgery will be aiming for complete resection of remaining tumour but seeding/reoccurance is still high risk, and completely resection cannot be guaranteed - nothing we didn't know. 

    Surgery will be followed by radiotherapy, chemotherapy is still an unknown.

    He asked about children/fertility as well. Before this cropped up we were just about to start trying for a baby, so we're glad that is at least going to be protected as best they can. 

    He's also going to take her case to an international sarcoma conference in early November, to speak to the people who first identified primary pleural liposarcoma (Myxoid pleomorphic type) and get wider input - which is good.

    Can't ask for more than "second opinions" from experts around the world!

    My partner remains in good health right now. Scared about surgery, but otherwise pretty fit and healthy. We were on a long dog walk yesterday and I was getting tired long before her which made us laugh. 

    I'm slowly but surely getting quite anxious about surgery. While the risk of mortality during surgery is quite low, I know it's going to be a tough month or two looking after her - but I'll endeavour to do my absolute best.

    All the best everyone x

  • I thought I had replied to you but can't see my reply.

    I shall be thinking of both of you.

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