Bartholin's gland cancer

Hi K Mc,

Sorry to hear of your recent diagnosis and of your struggles with lymphoedema. I am so sorry that you have also lost your Mum. That must be especially difficult when you also have all of this going on too.

I don’t have any experience with lymphoedema, but I have a friend  that has and I’m told there are lymphoedema specialist physios. It could be worth speaking to your consultant about whether that is something they could offer you? 

I wish you the very best of luck and I hope things improve for you soon. I am here if you want to chat or there is anything I can help with. 

Hopefully someone with experience will come along soon. 

Take care,

Thanks for taking the time to reply. I had a follow up appointment today and have learned that I will need radiotherapy. 

Drinking a big G&T at the moment. I just want it to go away!

Hi K Mc,

You deserved that G&T! 

I hope you are getting your head around the news of needing radiotherapy ok. 

I can empathise with  the feeling of wanting it to go away. I found being kind to myself and taking one day at a time helped. 

Always here if you want to chat.

Take care,

Hi there. I was recently diagnosed with Bartholin cancer and have been searching for others since we are so rare. How are you doing now?

Hi Sarah, I'm so sorry to hear your news. 

The good news is that I am cancer-free and well on the road to recovery. I had a partial removal of the vulval area affected. My surgeon decided to remove both sets of lymph nodes at the same time, and cancer was detected in one side, so it was just as well.

I had to have a course of radiotherapy and chemotherapy. The radiotherapy was for 25 sessions and the chemo was for 5 sessions (1 per week - I didn't lose my hair).

Physically, I am doing well. Mentally it has taken it's toll, but I think that was partly due to losing my mum on the same day as being given the news that I had cancer.

Remember everyone is different and their cancer is at different stages, so it doesn't mean that you will need the same treatment as I did.

Good luck, stay strong and I am still here, cancer-free, as proof you will beat this!

Sending much love and best wishes for the future. Xx 

Thanks so much for your quick response and for giving me some hope! I’m so sorry for your loss. I cannot imagine getting so much bad news at once. I am so happy for you that you powered through and are cancer free. I appreciate hearing about your experience even though mine might be different. I needed hope! It is so strange being diagnosed with something so rare. I am grateful to have found someone else who has had it although I wish neither of us had to deal with this. Thanks again and I wish so much luck and continued healing. 

Hi again. I just found out I need to have lymph nodes removed. All of the ones on one side. I’m concerned about lymphedema. Did you experience lymphedema? I so appreciate you sharing your experience. 

Hi Sarah, my cancer was vulval, but I had 18 lymph nodes removed from both sides at the end of June as sentinel nodes were cancerous.  I've not had problems with lymphoedema.  I watched expecting to after 5 weeks of radiotherapy which ended on 20 September but so far so good.  It's not a simple operation and I had 2 drainage bottles in situ for 5+ weeks which wasn't easy, but my consultant wanted to make sure I drained less than 20ml each side before they were removed.  I was advised to move around as much as possible after the operation so I walked around a lot.  The weather was good so I could walk into the hospital garden, but you can walk around the hospital. I hope all goes well.  Sandy xxx

Thank you Sandy. Your surgery sounds like what mine will likely be. I appreciate hearing your experience so much. I feel so encouraged by your positive attitude. I see a lot of horror stories online and I really needed to hear a story of resilience and survival. Sending lots of hopes for your continued healing and huge hug of gratitude. Thanks for sharing such an experience with me! 

Hi Sarah, sorry for delay. I had all my lymph nodes removed on both sides.  I had to have drains on both sides until the fluid reached a certain level.  I was told that there was about 50% chance I could develop lymphoedema.

To be honest this petrified me more than the operation at the time, as I have always loved to walk and I thought that it would impact on my life. 

I initially had slight swelling on 1 leg, particularly around my ankle. However as time has gone on, the swelling is barely noticeable.  I can still get in to all my shoes, jeans etc.  I think the key is to keep active.

 I think it takes a bit of time for the fluid to find another route to drain - hopefully as you will still have lymph nodes, you won't have any problems. 

Again, stay strong and positive. Wishing you all the luck in the world. Xxx