voluntary lymphadenectomy

Hi Han87. I do not personally have experience with having lymph nodes being removed, but I noticed that your post has not been answered yet, so I hope you don't mind me replying.

That is a very difficult decision you have to make. My cancer journey has been completely different to yours (you can read my profile to see my story)  but personally if there was a chance I could be 100% cancer free, I would take it. Of course the decision has to be yours, and I can fully understand how you will be concerned about the Lymphoedema. 

I have attached the lymphoedema leaflet HERE for you, that you can download. Hopefully that might help with your decision.

Take care

Hi Chelle,

Thank you for replying, that's really kind. The more time I have the more sure I am that I will get the surgery. It's hard to remember that the while the risk percentages are scary, the most likely outcome is that I will be ok. 

Also thank you for sharing your story. I'm sorry to hear it's been complicated by medications. I'm sure my cervical cancer has been brought on by years of taking the contraceptive pill but have stopped that now and feel much better for it. 

x

Hi Han87

I have lymphoedema as a result of my cervical cancer treatment and for me it's a very debilitating condition.  According to your doctors, and if my maths is correct, you have around 10x the chance of getting lymphoedema from the op compared to your risk for cancer being in your lymph nodes.  I can't really say what I'd do in your position because I haven't exactly been in it. 

One suggestion I have is to investigate the possibility of having only your sentinel lymph nodes removed as this should reduce the risk for lymphoedema. 

If you do go ahead with the lymph node removal, sentinel or otherwise, it's important to be educated about lymphoedema so you can know how to reduce your chances of getting it (N.B. skin care) and know what to do if you get symptoms (referral to a Lymphoedema Clinic fro  your GP). 

The trouble with lymphoedema is you can have it without symptoms, during which time potentially irreversible damage may be occurring to your lymphatic system.  The only way way to know if you have sub-clinical lymphoedema is with scans e.g. IGG lymphography and lymphscintigraphy.  These scans are generally only available privately; if affordable and if were you I would get checked out at the Oxford Lymphoedema Practice soon after your lymph node removal  - for further information see the following link: https://olp.surgery/   Another option for getting a scan is with LymphVision: http://www.lymphvision.com/

All the best with your decision

Hi Beth2, thank you so much for replying. That's really useful info. I was going to have a look into private care but didn't really know where to start so thank you. I don't know if it would be something I could manage but I think it's good to know all the options. I'm sorry to hear that you've had long term effects of treatment, it is such a worry. x

Another source of private care is MLD UK who have a list of qualified therapists including some who can measure and prescribe for compression garments (those with Member DLT after their name - but check prior to making an appointment): http://www.mlduk.org.uk/