Hello,
Apologies up front - I'm not good at keep it brief.
My partner is 30 years old and has been diagnosed with Myxoid pleomorphic liposarcoma in the thoracic/rear back and neck area.
Back in August my partner went from fit and well hiking up moorlands one weekend - to feeling all sweaty on a train when she wouldn't normally early week - to A&E due to numbness/pain in her back, shoulder and arm mid week.
X-ray of her chest revealed a pleural effusion and a strange shadow on her chest.
We were referred to another hospital as the local one didn't know what they were looking at - and a lung specialist consultant said she needed surgery the next day due to a growing pleural effusion, collapsed lung and the shadow over her lung. He was perplexed as well, but he made the right call.
She had surgery and a chest drain - the VATS surgeon, a pretty impressively experienced thoracic and oncology surgeon, said he found something that looks suspicious and might be tumour but he didn't really know what it was either.
Surgeon got the majority of the the suspicious mass out, but it was an unknown at that stage and very close to crucial blood supply, nerves and the spine.
Biopsy revealed Myxoid pleomorphic liposarcoma - even in the world of sarcoma being rare, Myxoid pleomorphic liposarcoma was only identified in the last few years and as far as liposarcomas go, a thoracic presentation of liposarcoma is very rare.
Unfortunately, Myxoid pleomorphic liposarcoma has been identified as a particularly aggressive variant with predominant presentation in middle aged adults.
The fact she had pleural effusion and "whoopsie surgery" (albeit immediately necessary to relieve the collapsed lung) the risk of metastases is very high.
She had surgery around the turn of the month between August and September.
It was diagnosed as cancer on the 26th of September.
She had a PET/CT quite rapidly after that.
We saw the surgeon again on the 13th of October which revealed the histology results and specific type of liposarcoma. We discussed MDT outcomes and PET/CT results which weren't strongly indicative of remaining cancer but nevertheless full thoracotomy to remove any residual tumour and adjuvant radiotherapy was agreed.
She had an MRI the same day.
We've basically heard nothing since then, despite chasing.
Her thoracotomy surgery will be complex due to the proximity to major blood supply, nerves and the spine. So a thoracic, neuro, cardio and plastic surgeon needed to be consulted.
We've just been given a date for surgery, 4th of December.
68/69 days following initial presentation and suspicion of cancer.
They want to do another MRI before surgery to check for changes. In reality, any growth of the remaining tumour would mean surgery is out of the question.
Surgery carries significant risk - cardio are happy with it, but there is a significant risk of nerve damage resulting in loss of various bodily function control and permanent damage to the use of her arm.
Now I don't want to necessarily moan about this - the NHS have accurately identified and astonishingly rare cancer and everyone involved in her care has been pretty excellent. I'm also very aware of the complexity of surgery and the difficulty of organising multiple specialists in the same theatre.
Nevertheless - this feels like an absolute age.
Even more so given the aggressive nature of Myxoid pleomorphic liposarcoma.
I just don't know what to do.
On one hand I feel like the delays are completely understandable, on the other I feel like she's being handed a death sentence and all hope has gone.
She currently remains well, with no major pain or discomfort and nothing to suggest the cancer has returned. But I'm acutely aware trunk sarcomas often present with minimal symptoms.
I'm also very aware she needs radiotherapy asap to limit the chances of metastases, and this can only take place once recovered from surgery.
I'm feeling extremely pessimistic - absolutely hopeless to be perfectly honest. I've gone to a very dark place mentally.
I don't really know why I'm posting this. I just need to get it off my chest really.
Apologies for any spelling or typing errors.
All the best everyone.
