Hello Cheryl

I just wanted to post to say thank you so much for sharing your story. It can be incredibly helpful to others when someone who is diagnosed with rare cancer shares their experiences. I'm sure that at some point in the future, others will find your post useful. 

I also wanted to say well done for getting through 12 rounds of chemo! It has been an incredibly difficult time for many, many patients undergoing treatment and I do hope that your upcoming scans bring some positive news. 

Stay in touch Cheryl and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello Cheryl 

I do hope you have recovered from both the  chemo and any subsequent surgery, 

I'm find myself in a similar position to yourself and was diagnosed with a Mediastinal Germ Cell Tumour  in July 21, I have completed the chemo (a very tough time) 9 weeks ago and now have a date for thoracic  surgery, I'm a little anxious about it as I'm just recovering from the Chemo and now find myself back in the fray with a significant surgical procedure. The tumour compressed my superior vena cava  and is close to my aorta. The surgeon feels its possible but has highlighted some risks including possible damage to the phrenic nerve which would cause real breathing problems in the future.

Did you undergo surgery, did it go OK and did you recover quickly?

Thanks in advance 

John

Hi John!

Wow your the first ever person I've spoken too who has exactly the same as me! I did have surgery & my cancer was also in the same place as yours. I did need heart surgeon team in with us too as the scans were not clear enough if it had attached to my heart or not. Thankfully it wasn't & surgery was a success. Recovering was the difficult part, unable to use your arms/hands with lifting, pushing was a struggle, I even had to have help getting out of bed! I had the operation in the April, was driving again in August & returned to work by end of September.

Unfortunately though my story doesn't end there!

After 6 weeks of being back at work & returning to some sort of normality I started getting back pain, all to familiar from when I was first diagnosed. My cancer had returned & at an aggressive rate! I needed to have a stem cell transplant 3 of them back to back starting back in November last year. After the first transplant it wasn't showing any improvement whatsoever so my team said it wasn't fair to put me through it yet again. So after just 3 weeks the process was stopped & I was told the cancer is incurable! And that I had less than a year left of survival

I start a new round of chemo next week, just 3hrs a week for 3 weeks then a rest week on week 4.

This is only to prolong my life. At 35 I'm not ready to give up just yet! 

Fingers crossed all goes well for you. 

Cheryl x

Hi Cheryl 

So sorry to hear that the cancer returned, Germ Cell tumours are so rare there is little information on treatment and outcomes. 

My tumour has shrank consideraby with the Chemo, 120mm dia - 60mm diameter and my AFP numbers have indicated the tumour is 90% dead, however its a marathon not a sprint and its a long way from over.  I'm 57 so recovery from chemo has been hard, 15 weeks of CBOP BEP left me with Neuropathy and extensive  muscle weakness which is still there 9 weeks after the Chemo was completed.

The surgeon feels he may be able to remove 90% of the remaining tumour but not without risk, so I'm a little anxious  I may face further hurdles before this is over.

I want to wish you all the very best with your treatment and hopefully some progress can be made, Germ Cell tumours respond well to chemo so the chemo may make a significant difference

Best wishes for the future 

John