Lymphoedema neck

[Cardiff05]

Hi

My wife is on her third line following a reoccurrence which has progressed to the lymph nodes in her neck.

There has been a gradual swelling around her neck/shoulder and now to her throat with some pain which appears oedematis.

The focus of the oncology team has been on pain relief no mention of lymphoedema, despite my concerns!

I'm wondering if anyone else has had a similar experience and how it was treat?

Thank you

[Trickysite]

There is a very good lymphodema uk website. On it, people have lymph in the face and there are treatments for it. Experts write about it on the website. If you cant find it, ask again and I will look it up. Emma

[Cardiff05 in reply to Trickysite]

Thank you Emma 👍

[Saintgermain]

Not sure if this applies to your wife's situation directly but I'll share my journey with you I'm in the US my first recurrence was in my left supraclavicular lymph node in my neck had carbo/taxol scans clear as lymph nodes can be stubborn it re appeared again although small in 3 months' time as it can be systemic I'm currently on Doxil/Avastin I believe you call Doxil in the UK Calyx the plan is to rescan in September if it's clear SBRT (proton radiation) will be done on the recurring lymph node. If your Wife is platinum sensitive carbo/taxol will eliminate the swelling I have low grade not high-grade lymph nodes are a common site for this type I've never had the swelling, talking with other survivor's radiation has been successful.

[Cardiff05 in reply to Saintgermain]

Thanks for the reply.I'm pretty much convinced the swelling is oedema although the CNS disagrees.

She's due to see the oncologist on the 15th hopefully get some clarity then but shall certainly ask about the radiotherapy.

Thank you

[Rosado22 in reply to Cardiff05]

The Lymphoedema Support Network LSN is very informative regarding swelling etc. worth paying the membership of around £35 or at least giving them a ring. There are various exercises you can do to shift fluid. I think you can access quite a bit online. From experience generally people have little knowledge and GPs have two hours training on lymphoedema.

[Cardiff05 in reply to Rosado22]

Hi Rosado.Thanks for the info I'm on to it 👍

[OvacomeSupport Partner My Ovacome Team]

Dear Cardiff05,

Thank you for your post, and to our community who have already left some helpful responses. You might find it useful to look at our Ovacome booklet on lymphoedema, which you can access here: ovacome.org.uk/lymphoedema.

If you scroll down the page, there is also a link to a webinar which was facilitated by Lymphoedema Support Network on why lymphoedema can occur in patients with ovarian cancer, and how this can best be managed.

If you have any questions, or want to talk things through, our support team are here for you. You can email [e-mail] or give us a call on 0800 008 7054. We're here from Monday to Friday, 10am to 5pm.

Best wishes,

Alice - Ovacome