Vulva cancer & scans

I have had a left radical left vulvatomy plus sentinel nodes removed which showed cancer 

Then had the lymph nodes removed I had a scan before I had any surgery which they said that it was okay it was later that they found cancer in the lymph nodes all been treated by surgery alone 

What I was wondering has anyone who has had this have to have any scans afterwards as I was thinking that as it was in the lymph nodes should I have had or be having scans to check that it hasn't gone anywhere my normal checks are not showing anything up so just wondering 

  • Hi Searchfamilies,

    Thanks for your post and welcome to the online community.

    It’s natural to have concerns regarding your treatment and follow up after your treatment stops. Everyone deals with this in different ways

    Everyone can be affected by any cancer diagnosis and its treatments in so many ways. People depend on their treatment teams to guide and support them through this.  It can be a worrying time. It’s Ok to worry. But its important to let your treatment team know how this diagnosis has affected you both emotionally and physically. This is so they can give you the best possible support moving forward.

    I do understand your concerns about lymph node involvement. Your treatment team would be able to give you a clearer understand of any further follow up you would require taking this into account. If you do have this conversation and still have concerns, you can always ask for a second opinion. Scan can sometime be appropriate. But consultants would also react to your concerns as this can highlight things quicker as you know your body better than anyone else

    If you think it may help why not give us a call and we can discuss things further.



  • Thank You Keith

    I am not overly worried it's just that a friend has cancer & she has had several scans her cancer is totally different from mine not even a gyn one but her lymph nodes have not been removed but it got me thinking 

    I did phone & leave a message about lymphedema after seeing the doctor & nurse on my last check-up & was told to phone the bigger hospital where I had my surgery

    The leg on the side I had all the surgeries & abscess is more swollen than the other not so big that I can't get shoe on but it noticeable if you look at both 

    Again I am not overly worried but do believe that it's best to find out & be aware & not bury my head in the sand 

    So should I phone the team at the hospital or see my GP

    Best Wishes 
  • Hi ,

    Thanks for your reply. 

    As you have described your symptoms and the swelling in the leg as worsening, it’s important to have it assessed as soon as possible. Because we are about to move into the weekend, we would urge you to contact 111 today so that someone can review your symptoms. There are a number of possible causes that can cause a swollen leg, including a DVT which needs urgent attention. You should also contact 111 if you have any new or worsening symptoms. It would be useful to contact your hospital team to let them know as well, but it is important that someone looks at your leg today.

    It is understandable that you worry because your friend has cancer. It is important to remember that everyone’s cancer is different, and that even people with the same diagnosis can have different experiences. 

    It sounds like to would be helpful to speak with someone from your treatment team, so they understand how you are feeling and your concerns. If necessary, they can arrange for further investigations. This would also give your opportunity to ask for copies of letters and reports so you have a record of your diagnosis, treatment and plan for follow up. You can get the contact details for the team from the surgeon’s secretary. 

    There are lots of other ways you can get help. As my colleague suggested earlier, you can also call us to talk things through.

    Best wishes,

    Louise R - Macmillan

  • Thank You Louise 

    I did mention it to them at the hospital when I had a check-up last month 

    They didn't seem worried about it & it hasn't got worse since then 

    I will contact them next week if I feel any change or am worried I would contact someone 

    Thanks Again 

    Best Wishes