Lymph gland removal

[Colly54386]

I have primary lymphoedema in both legs which is managed by thigh length compression stockings. This week I have been diagnosed with cervical cancer and am to have a radical hysterectomy in 3 to 4 weeks time. I have also been informed that my pelvic lymph glands are to be removed. I will meet the surgeon next week to discuss the full details but am concerned that my swelling will get worse with the removal of the lymph glands.

[Lynora]

Hi Colly - I really hope that your oncologist liaises with your lymphoedema team, as they will need to make sure that you have adequate compression following surgery - possibly opting for tight-style garments. If they haven't 'networked' then make sure they do by being insistent!

[norberte]

hi colly

sorry to hear you've had to join the cancer gang

i'd go in there a bit stronger than that, lynora, & insist that the oncology team liaise with prof mortimer's team who are the uk experts

if there are some tips they can give your surgeon before you go in, you don't want to be finding that out post-surgery

& presumably you'll have proper antibiotic cover for the surgery?

you'll have enough on your plate getting your head round the diagnosis & preparing for surgery - you need to know that the surgeon's taking your lymphoedema seriously as not all of them 'get' how important that it (so maybe liaising with a posh professor will help rather then liaising with a local extremely expert team of nurses - sad but almost definitely true)

have a hug, good luck & if you want to then do let us know how you get on

[Colly54386 in reply to norberte]

Hi norberte, Thankfully my surgeon did take my concerns seriously and he has transferred my case to a hospital in Maidstone where the operation is performed slightly differently. Firstly they only remove the sentinel node to see if this is affected. It if is clear then they leave all the remaining pelvic lymph nodes in place. I am so glad he did some research for me, at least this way I stand a chance of the lymphoedema not getting too much worse. Still waiting for a date though!

[norberte]

hi colly

thanks for letting us know - i'm so glad they're taking you seriously

now, just got to get a date out of them!

hope you're not fretting too much in the meantime - i know i found it hard waiting for my mastectomies