Looking for advice

[Feeney]

Hi. Just after some advice regarding this condition. I was told by the consultant I have to have done lymph nodes removed as my arm is swelling.

I'm really confused as all the links I look up are after breast cancer. Would appreciate any advice.

[pushkin]

Welcome to the community. My straight comment to you is this.....If you take the filter out of your car...what happens? Answer you flood the engine ! The same applies to the body- the lymph nodes are part of the filtering system of your body. so without them you will flood your body and have an even bigger disaster un your hands I can offer you several options..visit TTAC which is an endlessly helpful and honourable site, GreenMed info. It could be very useful to visit the site of Chris Woollams , There is so much misinformstion and plain ignorant doctors/consulants out there who are totally in the pockets of the drug companies so BEWARE D ON'T PANIC take time and do your research. The International Colleg e of Lymphology is another Resourse. I wish to God that I Had had all this assistance available to me two/three years ago. My strongest advice to you is DO NOT let ANYONE persuade or pressure you inyo lymph node removal..or you will have a lifetime of trouble like me. I was in surgery and a vital lymphnode was removed without my permission.Remember too, that family members, can, in their ignorance persuade you to..'do as the doctor sas' he knows best! Don't believe a word of any thing until you have educated yourself. Also visit earthclinic.org another helpful site. All my suggestions are free.

God Bless and all the best Please feel free to contact me if so wish. This is only for Feeny([e-mail])

[Feeney in reply to pushkin]

Pushkin thank you very much for this information it really has helped.

So kind of you to take the time for this.

Much appreciated x

[pushkin in reply to Feeney]

Been there done that got the t shirt! Thanks for the email. please keep in touch. I live in Eastern Europe..Ukraine

[Lynora]

Which lymph nodes? Why? What sort of consultant was he? Have you received any form of imaging to explain the swelling?

[Feeney in reply to Lynora]

HI.

I attended a breast clinic.

I have had ultrasound's done and they take the size of the nodes.

It's the lymph nodes under my left arm.

[Lynora in reply to Feeney]

Which clinic?

Have they done a biopsy of a node to see if there are any cancerous cells?

[Feeney in reply to Lynora]

It was the breast clinic.

I have had 3 mammograms and 2 biopsies which they said ruled out cancer but the problem is still there.

[pushkin in reply to Feeney]

And yet your cowboy 'consultant still insists you have to have the lymph nodesoved to remove the cancer..WHAT CANCER??!!!! i have one word for you 'consultant'..... BULLSHIT but Feeney I have told you before where to investigate for the very best advice and in my estimation you have probably done nothing to follow it up.. You know the old saying....you can take a horse to water but you can't make it drink. What you choose to do is your perogative of course but why do I feel I am wasting my time

[pushkin in reply to pushkin]

sorry lymph nodes removed

[Feeney in reply to pushkin]

I have taken all your advice and am seeing the lymphatic nurse on Tues.

I'm just so confused with it it please don't think I don't appreciate all your replies as I do and have heeded the advice

[Feeney in reply to pushkin]

I really do appreciate all your advice. I was totally inv the dark until I read all your replies. Please don't think it's not appreciated. I have listened and found out who my lymphatic nurse is and I'm going to see her on Tuesday. Without you guys I wouldn'tof even known I could do that so it really is appreciated

[Hidden]

I am not a doctor but it sounds the wrong way round to me. Usually lymphoedema occurs after lymph nodes have been removed. I suppose lymph nodes could be blocked and am not sure if there is any way of unblocking them. Have you been given any exercises to do to try and get the lymph moving? You could contact the LSN (Lymphoedema Support Network) to ask for advice. Please give us some feedback. Hope you get sorted x

[Feeney in reply to Hidden]

Thank you Christie for your reply.

My lymph nodes have been enlarged for over a year. I've had mammograms and 2 biopsies but still no answers.

My arm and underarm is swollen and I feel it's moving down my arm.

The consultant said he thinks my lymph nodes could be blocked and not draining?

But when I Google about it (I know you shouldn't) it just really talks about breast cancer.

The consultant has a meeting today and is meant to be calling with a date for the operation 😣

X

[Lynora in reply to Feeney]

Sorry - missed your reply! Have you been referred to a Lymphoedema clinic? It could be primary Lymphoedema - quite rare in the upper limbs, but it can happen. Removing nodes which are non-cancerous is seems unnecessary - where are you?

[Feeney in reply to Lynora]

No he said to go with the operation and see what's up

[Lynora in reply to Feeney]

I would ask for a referral to a Lymphoedema clinic first. Like I said, it may be primary Lymphoedema - more tests need to be done - lymphscintigraphy would be the first option.

Of course he wants to operate - he is a surgeon - you need a different opinion.

Where are you based?

[Feeney in reply to Lynora]

I'm based in North Norfolk uk

[Whitesugar in reply to Feeney]

Perfect. Ask for a referral to the Lymphoedema Clinic at Kings Lynn. The lead there is a very experienced Lympheodema Clinician. She would be able to refer you on to St Georges in London if she thought it necessary. Certainly do not have surgery until someone experienced has examined your lymphatic system.

[pushkin in reply to Feeney]

BULLSHIT!

[CCT67]

Hi Feeney

Like the others have said DO NOT go forward with an operation without more investigation. It sounds like your consultant isn't broadly experienced in lymphatic disorders/impairments. By having nodes removed you may cause far more problems than you currently have!! Having swollen nodes does not equate to needing them removed, there is a reason they are swollen and this needs to be more thoroughly looked into

Ultrasound is a very basic, generic scan/imaging; however it does not pick up what more sophisticated lymphatic-specific scans are able to identify in the way of your lymphatic system blockages and difficulties. One of the lymphatic scans is called a Lymphoscintigram.

As another has said, it would benefit you to speak with the Lymphoedema Support Network. It would also assist to see what benefit having Manual Lymphatic Drainage therapy. Take a look at the MLDUK website for qualified therapists in the UK.

Although your consultant wants to schedule a date do ensure you have further investigation and explore other options before having a disruptive and body-changing surgery like node removal.

All the best x

[Feeney in reply to CCT67]

Thank you for your reply.

I'm all so confused by it all. Thank you for your advice.

It's been going on for at least a year and a half now.

My underarm stays constantly swollen and now it's going down my arm. My lymph nodes have constantly been enlarged and thickened.

My arm and underarm is painful and feels heavy all the time.

[AnneBury]

The Lymphoedema Support Network lymphoedema.org has a website and a telephone help line (you probably need to phone them). They are UK based, have existed for over 25 years and are very well respected by patients and medics.

[Feeney in reply to AnneBury]

Thank you Anne bury I will definitely give them a call. Thank you. X

[AnneBury]

Just to add, plenty of us have lymphoedema without having had cancer. Other "traumas" can cause it and some of us have just been born with faulty lymphatics, although this can take years to actually show up. In my case I was born lacking lymph vessels (below knee both legs). Didn't show up for years but now have 2 (below knee) swollen legs & feet.

[Feeney in reply to AnneBury]

Oh annebury I didn't realise this!

I have an under active thyroid too but he says that's no way connected. I just wonder if it is.?

Both legs that can't be nice at all x

[AnneBury in reply to Feeney]

It is a nuisance, but it hasn't really stopped me doing whatever I have wanted to do. It did start (show up with swelling) when I was 11 & I didn't get a diagnosis for years. If you look at nhs.uk website & conditions & lymphoedema I appear in a video clip talking about it.

[Lynora]

Hi Feeney - I have just sent you a Private Message. See if the little bell at the top of the page has turned red!

Lynora x

[CCT67]

Just to underline the possibility that you may have Primary Lymphoedema/LE causing the swelling and heaviness symptoms. Although the many people are born with it there are also many of us with Primary LE who didn't have it become problematic and assessed until later in life. I was 46 when my feet and legs started blowing up and my groin nodes became very enlarged for no apparent reason. Through investigations in 2015-16 I learned that I have significant Lymphatics impairments in both legs including no lymph vessels in 1/3 of my right leg, failing lymph valves and nodes not working properly - they are swollen and causing blockages in my left and right groin hence swollen heavy legs. My LE can be very painful at times while other people experience less pain

I urge you to ask for a Lymphoscintigram to be undertaken to determine what is going on with your arm Lymphatics. Your GP can refer you to a local Lymphoedema Clinic where specialist nurses are very knowledgable and can help assess what's going on for you and what intervention would assist.

Although your surgeon is well intended, the surgery option he is advising is all he knows to do, he's a surgeon after all.

Like you I spent over a year with symptoms which got worse over the course of the year and I wanted answers. However it's worth being patient and explore all investigation methods x

[Rebec]

Hi Feeny, I would follow the advice given by many, starting with Lynora. You could ask your surgeon to explain to you why he thinks that by removing your lymph nodes your lymphoedema, in his opinion, will disappear as this doesn't make any sense.

Because you've mentioned the thyroid too, may I suggest you go also on the thyroid forum and ask the many people belonging to it if there is any connection. Don't rush into any operation. Also, you can ask for a second opinion too.

[Feeney]

Hi all.

Thank you all so much for your advice. I've been looking into things.

The last thing my consultant said to me was they would call with a date for surgery. On Friday I got an outpatients appointment for Wednesday. I'm a bit confused in receiving this. Any ideas?