Newbie - vulval cancer spread to pelvis. Anyone had SCC metastasis?

Hi MidlandsMama, I can't comment on the specifics of your cancer but I can tell you I responded well to squamous cell carcinoma in the neck with chemo and radiotherapy and, although they also found a second tumour in the lung, I am still stable and undergoing immunotherapy. I am on holiday in Thailand at the moment and enjoying it. There are so many treatment options nowadays that they will come up with something to help you. One thing I have learned on this journey: don't try and become an oncologist, those guys study for years but be aware if what's going in and seek advice if you are not happy with it. I wish you well

• Thank you so much for your reply and so good to hear that you’re stable and having a lovely holiday abroad. Its something I hope so much to be able to do again xx

Hi MidlandsMamma, so sorry you've had to join us here but on the plus side you couldn't find a better forum for support and an arm around your shoulders. 

Hope your chemo goes well and has a positive effect on your tumour. Good luck ️

Tvman x

Thank you so much, the warm greetings are making me feel I've found a good place x

Hi MidlandsMamma,  sorry I don't know about your specific cancer.  I have secondary breast cancer with bone mets.  Like Patrick I have also been on holiday this year.  It is so great to be part of this family for support and chats.  It really helps me.  I hope that you find as much support on here as I do.

Lee xx

Thanks so much. I'm exhausted and very sore from the rounds of chemo and radiotherapy for 5 weeks so adding in this news I don't have the emotional reserves to deal with it. You're all giving me hope xx

Hi MidlandsMamma 

I also have a different sort of cancer, but wanted to welcome you to this section of our community. It must be difficult to not only have a rare cancer but to have it start in the vulva. Then to go through surgery and radiotherapy in that area only to find the cancer has spread. I know everyone here endures challenges but I can quite imagine how sore you must be and how hard it is to get your head around what you are going through. 

Thank you and its clear that everyone has and continues to face enormous challenges but are still here and supporting others which is incredible xx

Hi MidlandsMama

So sorry to hear about your recent spread. I have a different kind of cancer but had 2 pelvic recurrences.  I don’t know whether

1 re radiation to the new site is an option? Would SABR be possible as it is more targeted? 

2 Pelvic exenteration operation is a possibility? I had that and managed to clear all the cancer at the pelvis.

Could you seek a second opinion from Christies at Manchester ? Private is much faster but as your disease is fast growing maybe time is of essence. 

Thank you that's really useful. I'm being discussed at the MDT on Tuesday then will get a call to start treatment ASAP and see my new consultant. I will look into second opinions though if they are only offering chemo as I don't have time to try one thing for a few months that might not work xx