Hello Adoasc, 

A warm welcome to our friendly forum - and this is really what our forum is for, bringing together people who may never have met otherwise but who share the same - often rare - condition. Here you will meet others who understand the same daily struggles, the mental impact and how living with thymic cancer can affect your life and that of your loved ones. Cancer of the thymus gland is rare and apparently "around 30 out of 100 people with thymoma (30%) have other conditions such as myasthenia gravis (MG"). As you know, MG is a rare condition that affects the immune system and causes muscle weakness.

I did a little bit of digging around the forum looking for other members who may have been diagnosed with thymic cancer before and/or been affected by myasthenia gravis. I have found for example Amanda.. who posted her thymic cancer story a few months ago or more recently I remember responding to SailingDreams who posted this thread about being diagnosed with thymic carcinoma. They are just a couple of examples but past threads on thymic cancer but don't hesitate to respond to them if you would like to do so. I thought  I would also mention a member whose username is Wool who mentioned in this thread having Lambert-Eaton myasthenia syndrome and Myasthenia Gravis - again don't hesitate to reply to them and share your own experience of MG. 

I hope this helps a little and that you will hear from others shortly who have been affected by these conditions. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Tara,

thanks for getting in touch. I am so sorry to hear of your diagnoses. Our cancer is so rare that not many people, if any, have ever heard of it. Also, treating it makes it a little trickier as well. I see you’ve had chemo? Have they suggested anything else? If you don’t mind me asking, where are you being treated for it? 

Good morning. I’m in Pembrokeshire in west wales. Currently half way through my second round of chemo. Almost exactly a year after my first unsuccessful round of chemo. After which I’ve had radiotherapy to my chest and neck. I’ve two more cycles to go then scan to see if anything has responded! (It’s spread to my liver too) 

Tara 

Hi Tara, sorry for the delay. 

I am being treated in Manchester. However, I am currently in London as I have surgery on Wednesday.

so in brief, I was diagnosed with MG in May. They then discovered that it had been caused by a type B3 Thymoma. It had invaded my lung, was touching my pericardium and it had wrapped itself around my 2 major arteries.

I had 4 rounds of CAP chemo, after which they decided to carry out open chest surgery. They only removed 80%. I then had 30 rounds of radiotherapy to try and get rid of the last remaining bit. Unfortunately, it didn’t work and the tumour had actually grown slightly.

I was then told there is nothing more they can do for me as further surgery would be too risky based on it being wrapped around my arteries. They just said they would manage my life expectancy as best they could. They said I had years, not decades. 

I wasn’t willing to accept that and I found a surgeon in London who was willing to operate and had done a number of procedures similar. So here I am, awaiting surgery to hopefully get the rest out. 

Have they not said if there are any other options available to you? Have you had a second opinion? Have you spoke to any other oncologists who specialise in Thymomas? 

If you have any questions or want to chat please let me know. More than happy to chat and talk in more detail.  I pressure though. Whatever your comfortable with.

Adam