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
  • Update - 2 weeks since diagnosis. 

    My partner was getting quite concerned about wait times and wanting to have her case infront of the MDT early last week, and we hadn't heard about the PET scan yet. She had a real wobbly, but weirdly enough her surgeon just happened to phone out of the blue for a check up the very same evening. 

    He's great. Unbelievable timing because it took away the dark clouds that evening.

    He put us at ease and said he'll still be talking at the MDT without a pet scan. And given the majority of the sarcoma MDT deal with limbs, whereas he and his superior are thoracic surgeons, we shouldn't be overly worried about delay assuming the PET scan doesn't show anything unexpected.

    Then my partner had notification of her PET scan appointment last Tuesday evening.

    It was quite a wait (it would have been 18 days after diagnosis) but thankfully she took the initiative to phone up and ask to be placed on any short notice cancellation slots and said we were happy to travel. We were fortunate enough to get a cancellation for the very next day (Thursday)

    So we had that done and dusted within 9 days of diagnosis. The pet scan was pretty uneventful, she didn't find it uncomfortable or scary (other than the obvious fear of where cancer might be found). 

    Then the next day, we had a lung function test. The gentleman doing the test said he was quite happy with it all. Again, pretty uneventful.

    And then the next waiting game started. High anxiety about what the PET scan might show.

    We heard from Macmillan yesterday and they said they've chased the surgery team about being presented at the MDT this coming Wednesday, which is good to hear.

    Later on in the day we had a call from the surgeons colleague saying he wants to see us this Friday morning. He's hijacked a nurses clinic just to fit us in. And assuming the plan is still surgery, she'll have her pre-op stuff done at the same time. 

    I know this is inevitable, and I know at this point moving forward is good.

    But the appointment on Friday is filling me with complete dread. 

    I can't help but assume the worst. Something like cancer has been found elsewhere, or she's inoperable, or worse. 

    In the meantime other than mentally being low, she's pretty good. No major pain, she's coming on dog walks with me again and is pretty much as fit as ever, keeping herself healthy to prepare for surgery. 

    I'm very proud of her. 

    Thanks for reading my brain dump!

  • I know how you feel, waiting is probably worse than just knowing. I hope everything goes well Friday and you get some good news. The good thing is they are moving quickly! 

  • Hi!

    Thanks for keeping in touch and reading my mind dumps, means the world!

    Hope you and your partner are doing well. All the best x

  • No problem at all, I enjoy reading the mind dumps and it helps when you offload! The outcome today is definitely a mixed one I can understand why you're feeling that way, I would be the same but you have to look at the positives no matter how hard it is and they are moving quickly if surgery will be in 2-3 weeks so that's great they are getting things going. My partner's cancer isn't extremely rare so we're at the other end of the spectrum and there isn't any preferred option to be honest with you but you have to remain positive and take a day as it comes. Keep us posted x

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  • No problem at all, I enjoy reading the mind dumps and it helps when you offload! The outcome today is definitely a mixed one I can understand why you're feeling that way, I would be the same but you have to look at the positives no matter how hard it is and they are moving quickly if surgery will be in 2-3 weeks so that's great they are getting things going. My partner's cancer isn't extremely rare so we're at the other end of the spectrum and there isn't any preferred option to be honest with you but you have to remain positive and take a day as it comes. Keep us posted x

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