Extremely concerned about wait times surrounding my partners sarcoma


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.

  • Hello Ethy, 

    Thank you for sharing your partner's story - I hope that you will hear something back and I can understand why you are feeling so concerned about this and I hope that you will find out more soon whether she can go ahead with the surgery and when the radiotherapy treatment will then start. It's normal in a situation like yours to feel helpless and hopeless and you've come to the right place to get everything off your chest and hopefully talk to others who have also supported a loved one through cancer. It doesn't make it any easier that your partner's cancer seems incredibly rare but it sounds like she is in very good expert hands as everyone involved in her care seems to have been excellent. 

    Our cancer nurses are available on this free number 0808 800 4040 if you would like to talk to them about anything - their helpline is open Monday to Friday from 9am to 5pm and they will be happy to guide you and answer questions you might have.

    I hope that you get a little more clarity on what to expect very soon and that your partner can have the treatment she needs and the radiotherapy as soon as possible without any further delays.  

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi Ethy,

    At the best of times, the gap between diagnosis and surgery often seems to take far longer than we patients and our families would like. 
    4th December may seem an age away, but you’ve already identified the reasons for this 4 week delay. 

    You could try to pressure them into bringing this forward by explaining the stress this delay is causing.

    Good luck

  • Offline in reply to davek

    Hi Dave,

    Cheers for the reply. You are right, the gap and waiting seems horrific whether it's days or weeks!

    My other half is quite satisfied with the wait, it means she'll have the very best surgeons in our area and she's confident they would bring it forward if it became possible anyway. 

    In balance she's probably right. Given the rarity of her sarcoma they are treating her a bit like a guinea pig (in a good way!). Her lead surgeon is extremely proactive, so I'm sure he's got the team double checking for cancellation surgery slots every day. 

    And at the end of the day it's her journey, as much as the anxiety is doing me a diddle I have to let her lead things. If she's happy, best I just put aside how I feel and let her direct things.

    Thanks for the support. 

  • Offline in reply to Ethy

    She sounds cool, keeping calm and carrying on.
    I really hope it goes well. 

  • Just had a call from the MacMillan nurse giving us a heads up that the appointment that was booked with the surgeon and as pre-op this coming Monday is now a meeting about a "change of plan". 

    Which is doubly upsetting, as it was only yesterday that the thoracic surgeons nurse team phoned after MDT to confirm pre-op. 

    They've also cancelled an appointment with the plastic surgeon tomorrow. 

    Unfortunately no one will tell us what the "change of plan" is yet, just that the meeting will be with the thoracic and cardio surgeons will be there alongside the oncologist. 

    I fear what I worried about 20 days ago is now true; the wait has meant her surgery is not possible. 

    This would be extremely bad news. 

    We're also deeply upset with the communication from the hospital. I understand the logic of wanting to be upfront and honest, but the MacMillan nurse essentially telling us "change of plans - can't tell you what though" just means we're going to spend the next 3 days in a pit of despair. 

    I don't even know what to do or say anymore. Hope has left my head, and I cannot see a way out of this anymore.

    I just love her so much, I can't understand why she is going through this. She's always been a beautiful person in every sense. I've been a terrible person far too often, I can't understand why I deserve to sit here healthy while she's facing mortality. 

    Life is horrible.

    All the best everyone. 

  • The tumour has grow and is now too close to the spine to operate. 

    As I feared. 

    She will start chemotherapy with the hope of shrinking it enough to become operable once more. This will start asap. 

    There is no time for fertility treatment, so our hopes of having children in the coming year are now gone. 

    Which hurts. I can see how much it pains her, but I am also truly broken about it. 

    Nevertheless, I would rather she finds health and lives a long life than dwell on lost opportunities of "what could have been". We will love eachother despite lost hopes. 

    I am pretty inconsolable right now. I've never felt so lost and low. I'm 30 years old and I've been with this woman since I was 14. For wrong or right, my identity does not exist without her, I am not me without her. Nor is she herself without me. 

    I'm so scared. I am so lost. I've never been so empty. I am trying my best to be there for her, but I fear I am failing.

  • Offline in reply to Ethy

    Hi Ethy, you are doing the most incredible job of being there supporting her. Hold onto your love, in the darkness the fear and the pain take hold but know you have your love. 

    im trying to do the same and know you are not alone. Keep taking one day at a time and hold each other. 

    you are being everything she needs and more.