Vulvar cancer with potential lung metastasis

Anyone? 

Hi Sandrine K,

Sorry for the slow reply. 

I am very sorry to hear of your mum’s diagnosis. 

Whilst I did have a diagnosis of vulval cancer, I don’t have experience in many of the areas you speak of so I’m not sure how much help I can be. Please do let me know if there’s anything else I may be able to help with though.

I don’t have any experience with lung biopsies, hopefully someone with experience will come along soon. Does your mum have a cancer specialist nurse? If so I have found them to be great for answering questions. 

I can hear how difficult this is for you and I’m sorry to hear your mums pain isn’t being managed well. It sounds like you are doing the most important thing by being there for her. 

I don’t feel I’ve been able to be much help, but I am here to chat if you would like to and please do ask any questions you may have. I will happily answer if I can. 

Take care, 

Thanks so much for your reply, this means a lot to us. 

Would you mind sharing what type of treatment you have undergone and how it was for you? Also, which stage were you in, if you don't mind me asking. Mom won't be able to do a surgery, so I am guessing it will be systematic treatments such as immune therapy and radiation. I sincerely hope that they will be able to help her.

Did you have severe pain too, and did you find any relief at all? She doesn't have a dedicated cancer nurse, but the treating doctors, who are very difficult to get hold of outside the appointment times, so we are considering to see a pain specialist. 

I think we are doing the best we can right now, and I know the doctors are too, but the uncertainly is the tough part. xx

Hi Sandrine K, 

I don't mind sharing at all

My vulval cancer was stage 1b and therefore I was treated with surgery alone. They removed 1 lymph node from each side and I was advised that if my cancer had spread to my nodes then I would also require radiotherapy, but this wasn't the case. 

The recovery from my surgery took many weeks and it wasn't helped by developing an infection. I can't comment on other treatment options, but hopefully someone else can. 

I didn't have pain prior to my surgery, just burning and itching. Following my surgery I found codeine helped. Your Mom shouldn't  have to suffer in pain . It may be worth trying her GP to discuss her pain. Her team should also be able to help, although I appreciate it isn't easy to get hold of them to discuss pain relief options. 

It sounds very tough. It must be so hard to see your Mom in pain. Please do take good care of yourself. 

Thanks so much for sharing your experience, and so sorry that you had to go through this and the infection. That must have been tough. I hope that is all better now, and that you have recovered or are recovering. 

I agree about the pain. I will try and see her doctor tomorrow and while she is in hospital to see if they can refer us to someone who is specialized in this. The GP is great, but I think it needs to be a pain specialist. 

I really hope that things will go uphill again once we got the lung biopsy off the way and hoping for some positive news as it's been some very difficult weeks for us all, especially my poor mom. :-( xxx

Hi Sandrine K ,

Thank you for your kind words. I have recovered and am doing well now. 

Good luck with the doctor, I hope someone can help with your mums pain. 

I will be keeping everything crossed for some positive news for you and your mom. It sounds really tough. I am always here to chat and we have our lovely advisors that can be reached on the telephone number below. They are very supportive and approachable. 

Thanks so much for sharing the number and great to hear that you are well. Things are moving forward, which I am grateful for. Now we just need to start her treatments and hoping she will cope well. Thanks again for the support xx

Hi Sandrine K ,

Sorry for the slow reply, I didn’t see your reply come through. 

I am very pleased to hear things are moving forward. I hope your mum copes well with her treatment. 

You’re most welcome. Message anytime 

My vulvar cancer was quite advanced they couldn't operate so I had radiotherapy and chemotherapy. My pain was managed with long lasting morphine twice a day and oral morphine for breakthrough pain. The radiotherapy helped with the pain as it reduced the size of the tumour. I went to see a Doctor at the hospice who specialises in pain medication and she was the one who prescribed the pain meds although my GP had already started me on morphine. I haven't had a lung biopsy.