And I'd just like to add - I've been nothing but amazed with the medical staff caring for her. 

From the surgeon, who just so happens to be a sarcoma specialist thoracic surgeon. To her consultant, who went out of his way to get her on a surgery list the very next day. Her Macmillan nurse, who was instantly on her knees comforting me when we got diagnosis. To her surgery recovery nurse team, who wheeled in a reclining chair and blanket so I could sleep next to my love. And I especially feel thankful to the healthcare assistant who let me cry on her shoulder, and brought me toast and coffee while my partner was off her face on morphine. 

I'm not a fool, the NHS as a system is far from perfect and I've seen things go wrong myself. 

But when it works, the people behind the system are the very best of humanity. Thank you so much. 

Hello, thank you for sharing and sorry to hear the news. Although it's a different type of cancer, I can relate to you as I remember these stages so well. My boyfriend was 27 years old when he was first diagnosed with Lymphoma (blood cancer), we are now 2.5 years down the line and still going. It's a very long tiring road, but their strength is always admirable and we have to stay by their side and be strong for them. I wish you both the best of luck, please keep us updated - this forum has really helped me in so many ways, people are so kind. My messages are also open if you need to vent to someone who can relate as the partner. Sending lots of love x

Hey! 

Sorry for the late reply. Everyone around us has been visiting and phoning! Between that and letting the news sink in we've been absolutely exhausted.

Not that I'm complaining, it's nice to see how many people are going out of their way to show support.

Thank you so much for the reply, truly appreciate it. Obviously no one deserves this nonsense, but it's weirdly reassuring to know other younger couples facing similar. 

Sounds like your boyfriend is a brave one. As you say, their strength is admirable and a real lesson in mental resilience. I would probably want to curl up and let a diagnosis be all consuming, so I have nothing but huge respect for people facing it head on. 

I send you both all the best and my love. Keep going strong!

Cancer is a massive change in life - but I'm slowly realising that it doesn't have to define the people we love or our relationship with them. They are still the people we know - and if anything, this diagnosis has been a real reminder of the love me and my partner share. Bitter sweet, but even adversity brings beautiful moments. 

And thank you for the offer of a message, and likewise - always happy to chat, from venting to just a general chat to take your mind off things .

Thank you so much x

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! 

Update - weird day, not sure what to think. 

The bad news:

They've managed to identify the type of liposarcoma - it is exceptionally rare. Is in case reports in literature can be counted in single digits rare.

Primary pleural Myxoid pleomorphic liposarcoma 

It is highly aggressive in case reports. Recurrence and metastatic in more than 75% of reported cases. But as the surgeon stressed and my data analyst head says - fewer than 20/30 people having this diagnosed ever reported isn't really enough to draw a conclusion. 

There isn't anything in the way of a defined treatment for this. Surgery and completely resection is still the gold standard but they don't seem to know if adjuvant (chemo/radio) is useful.

Because she had a pleural effusions there is a likelihood of tumour seeding now, but the surgeon and oncologist wasn't even convinced that has high likelihood for now.

The good news:

No change in chest x-ray. 

PET showed no evidence of metastases or cancer elsewhere outside of the tumour site. 

In fact, while the PET scan did show some "lighting up" at the sight of the tumour it didn't even strongly suggest malignancy.

The surgeon suggested while unlikely, it might be the case that what did highlight on PET could be benign post surgical scaring and the tumour has already been removed.

CT scan still suggests it's operable.

Right now the MDT and surgeon are still working with curative intent. They believe full resection of any remaining tumour remains possible.

Surgery will be tough due to the location. It'll be a case of thoracic, cardio, neuro and plastic surgeons all working together. And she will likely be sent straight to ICU afterwards. She's tough though, she'll be alright with surgery.

We managed to get an MRI today which will hopefully confirm it is operable, which is good.

We're probably looking at surgery in 2-3 weeks now. 

Chemo/radio afterwards will be explored and from her perspective, we will probably push for it because the potential results outweigh the negatives of "wait and see". 

So really not sure how to feel right now. No metastatic disease was good news, ultra rare cancer and medical staff scratching their heads is pretty concerning though.

All the best everyone 

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

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.