Lymphoedema Advice

Hi ,

I have experienced some similar things in the past.  Sometime before my diagnosis I developed a tender , reddened and warm area in my leg and this was diagnosed as thrombo-phlebitis (inflammation of a superficial vein) which was successfully treated with an anti-inflammatory. 

Because I have had this trouble in the past and also have extensive varicose veins, I always worried about the possibility of added  problems with lymphoedema after external radiotherapy.  So when, 3 years after I completed treatment, I noticed a rather puffy area at the top of one thigh I went to my GP.    She was unsure as to whether there was a problem but did refer me to the local lymphoedema service.   I was advised there, that as Lymphoedema can be managed and controlled but not cured I should wear compression tights as much as possible.  When I went to my yearly cancer check they were glad that I had taken this step and so far everything is OK

It sounds as though you are doing all the right things at the moment and hopefully it will improve.  However, in view of my earlier experience, there is the possibility of thrombo-phlebitis which can be treated

Good Luck

. 

Thank you for replying.

I just felt as though everyone was blaming everyone else "nothing to do with me" scenario. I will phone my GP again and ask to be referred because I don't know how long I will have to wait for CT scan (although I don't think it will be long somehow).

My leg is swollen from ankle to thigh, with the largest of the swelling being around my calf and knee. Fingers crossed it can be dealt with. 

Sue

I hope you get a diagnosis soon, it sounds worrying. The only problem I’ve had is swollen ankles. The Furosemide I’ve been prescribed has helped but by tea time they are swollen and time to put me feet up.

hope you have a successful outcome.

take care x

Hi bondgirl,

You aren't on Amlodipine for blood pressure, are you?

I was fine on a small dose, but when they increased the dose both my legs swelled up and were very uncomfortable. I couldn't bend them to climb over stiles, and couldn't get my calf into my wellingtons. Fortunately the Gp knew what was wrong as soon as I saw him, and he put me on Lercanidipine. I've been fine since.

I have a slight swelling in my left ankle which started 3 months after my operation. I saw 4 different people about it, and no-one seems too worried. It goes down overnight. The doctor said to worry if it gets worse or gets 3 times the size of the other!! And only worry if it pits.(stays depressed when you press it). xxxx

Hello Sue () Did you have pelvic lymphnodes removed during your hysterectomy? My gynae onc warmed me that I’d be more prone to lymphoedema when he removed 23 of mine. So far I have a very small amount of swelling in my pelvis (right side) which looks like I’ve put on weight lopsidedly. It comes and goes. I’ve mentioned it to my Gynae-onc team and on my last visit I saw the chap who did my surgery - he made a note, drew a diagram on the paper notes and said he wasn’t worried by it but would monitor it. He didn’t think I needed to do anything at this stage. My understanding of pelvic radiotherapy is that it can be a contributory factor to secondary lymphoedema. Can you ring your CNS and ask her advice? She might be able to explain why they want to wait til after the scan or she might try to expedite a referral to the lymphoedema clinic. I know one lady on here paid for private treatment (sorry I can’t tag her because I’ve forgotten her name) You might find some helpful advice here too https://www.lymphoedema.org/  I hope you get your ct referral through quickly and that you get some help soon x

Hi NannyAnny,

Strange you should ask but I am on Amlodipine for my blood pressure. I've been taking it since February (I think). My GP doesn't think it's related to the tablets as it's only in one leg. However, it won't hurt to ask again.

My leg doesn't pit, it's very solid and quite uncomfortable around my knee. It has swollen before but always went down overnight and never as bad as it is now. It goes down a little but not enough to be comfortable .

Sue xx

Hi Fairycake,

I did have lymph nodes removed during my surgery, 15 of them. No one warned me about lymphoedema, although Dr Google said it might happen. The swelling is quite firm and my leg looks slightly darker in colour too. I've spoken to my CNS, she told me to ask my GP to refer me to the emergency DVT clinic as I'd just come back from a long haul holiday. All scans were clear and there is no blood clot. I've got my CT scan tomorrow (29/08) and an oncology appointment on 13th September. It's not long wait really. I've thought about talking to my GP and asking them to refer me to a lymphoedema clinic whilst I'm waiting for the oncology appointment. I'm off work tomorrow, I'll give them a call and ask.

Never thought about going private, I have medical cover through work too. I will look into that.

Sue x

Hello Fairycake 

as I wrote sometime ago that I was having very severe pain in my back and legs. My Gp ordered a X-ray morning. 

Mir did not show anything but the pain continued be aware. I had a scan and saw my oncologist. She could not see anything on the scan. But the pain continued. I again went to go and asked MRI. She could not order that. 

We decided to go private and saw a consultant. He ordered MRI and bone Scan straight away and it was done within a week. They have found something on my bone. I am lucky that it is not on my nerves. We have now send all the information to my oncologist. I hope to see her an early September. 

Let us see what they say. I had to take raise the money from friends and family. It was very  quick but very costly. 

I am very worried and find it difficult to sleep 

Rahman xxx

Hello Fairycake 

as I wrote sometime ago that I was having very severe pain in my back and legs. My Gp ordered a X-ray morning. 

Mir did not show anything but the pain continued be aware. I had a scan and saw my oncologist. She could not see anything on the scan. But the pain continued. I again went to go and asked MRI. She could not order that. 

We decided to go private and saw a consultant. He ordered MRI and bone Scan straight away and it was done within a week. They have found something on my bone. I am lucky that it is not on my nerves. We have now send all the information to my oncologist. I hope to see her an early September. 

Let us see what they say. I had to take raise the money from friends and family. It was very  quick but very costly. 

I am very worried and find it difficult to sleep 

Rahman xxx

HI ,

I'm no medic and I would hate to feel that I am worrying you unnecessarily.  It is good news that a clot has been ruled out but as you say your leg looks slightly darker (a bit reddish?) I can't help wondering about the possibility that you have the beginning of cellulitis.  This is another problem that may arise as a result of the impaired lymphatic system following node removal and/or external pelvic RT.    If this is the case, it is serious and,should be treated promptly.   

I think  you should mention it as a possibility to your GP, who may not be particularly aware of the fact that cellulitis may occur after your treatment.  

I hope you get an answer soon and certainly before your appointment in September.