Signs and Symptoms

If there is one question that has literally driven me nuts over the last few months it is this:

How do I know if what I’m feeling is the onset of Lymphoedema?

Post surgery my body was obviously recovering from the trauma, not only that but I also experienced seroma and cording, coupled with the nerve damage its no wonder I went in to a complete tail spin about the whole thing.

Even now, my arm hasn’t fully recovered but pretty much every day I sense something and the series of questions begins again… What is that? Is this the start? What should I do? Have I done enough or did I do too much?… and so it goes on.

So, when a fellow breast cancer survivor asked me today, “Is what I’m feeling lymphoedema?” I was able to share with her what I have discovered about the early signs and symptoms and hopefully reassure her that she hasn’t suddenly become a hypochondriac.

– heavy arm
– feeling like you have a tennis ball in your arm pit
– pins and needles
– tight skin
– swelling anywhere from the fingers to the top of the arm
– feels warmer than the other arm
– when pressed the skin leaves an indent
– jewelry and or clothes become tighter
– arm goes hard

There are 4 stages to this:

  • Stage 0 (also called subclinical or latent): There are no visible changes to the arm, hand, or upper body at this point, but you may notice a difference in feeling, such as a mild tingling, unusual tiredness, or slight heaviness. You can have stage 0 lymphoedema for months or years before obvious symptoms develop.
  • Stage 1 (mild): The arm, hand, trunk, breast, or other area appears mildly swollen as the protein-rich fluid starts to accumulate. When you press the skin, a temporary small dent (or pit) forms; you may see this referred to as “pitting edema.” Such early-stage lymphoedema is considered reversible with treatment because the skin and tissues haven’t been permanently damaged. When you elevate the arm, for example, the swelling resolves.
  • Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphoedema can be managed with treatment, but any tissue damage can’t be reversed.
  • Stage 3 (severe): This is the most advanced stage, but it is relatively rare in people with breast cancer. At stage 3, the affected limb or area of the body becomes very large and misshapen, and the skin takes on a leathery, wrinkled appearance.

Once you have mild lymphoedema, you are at higher risk for moderate-to-severe lymphoedema than someone who has never had any symptoms. This risk persists even if your symptoms go away with treatment.

Every case is a little bit different, though. Some women have reported the sudden onset of mild or moderate lymphoedema without any warning signs or changes in feeling.

The goal is to reduce our risk of lymphoedema but its important to remember that if we do develop lymphoedema there are many good treatments that can help control the symptoms.

Source:  Breast Cancer.org and Medical News Today

Post Op Numbness – Week 18

The numb area has slightly shifted again. Trying to photoshop the area each week on to the original photo is not that easy so you could put it down to inaccuracy. However, the shapes are shifting and whether I get the areas slightly out of whack or not, there are definitely patches that have moved.

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Post Op Numbness – Week 16

Here’s a quick update on the progress my arm has made.

– The numb area as was in week 14 (14 weeks since the surgery) is the area marked in light pink
– Week 15 (last week) are the darker pink patches
– And this week it’s purple

The numb area has not receded as dramatically as it did last week but I’m still really pleased!

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Post Op Numbness – Week 15

Following on from my post last week about the area of my arm which was left numb after surgery, one week on I thought I would see what progress had been made.

In the last 7 days I have felt the nerves firing quite considerably, and at times it has been quite painful but its a pain I’m happy to have because I know that there is life there and that it means I’m healing.

So out came the biro and I started to mark up my arm just as before. With all the dashes drawn and then joined up I could not believe my eyes. I checked it again, and again but what I was looking at was right.

To show you the difference I have drawn over the top of last weeks photo to show you where the numb area was (in light pink) and where it is now (in darker pink). Since leaving hospital the feeling in my arm has not returned week on week at such a rate as it has done in the last 7 days. It really is quite unbelievable.

Why do I think this has happened? Well, you could say it has a lot to do with the skill of the surgeon, but even then my consultant told me that full feeling is unlikely to return for at least 6 months. Do I think it has anything to do with the water message test I started 10 days ago? Yes, I really do.

The last patch may take a while to come back but I am confident that it will now and even if it doesn’t, I have to say that I’m still really impressed.

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Life After Cancer Web Chat Transcript

MacmillanMacmillan have just released the transcript of their Life After Cancer Web Chat which took place on the 10th September. Whether you were able to join the chat on the day or not you can now see all the questions and answers online. I was there on the day and was one of the people asking questions about Lymphoedema.


Hilary Weaver, a specialist nurse from the Macmillan Support Line, answered questions on the physical and emotional after-effects of cancer.

In terms of living with the risk of lymphoedema, they say that you know when you have done too much exercise or put too much strain on your arm. The problem with that is that it’s then too late – I’ve done too much and the damage is done. How can I possibly know when enough is enough without doing any harm? What are the warning signs?

Hilary: That’s a good question. The risk of lymphoedema is greater if you suddenly do an unusual amount of activity or lifting. The key is to build up slowly and consistently so that your arm has lots of time to adapt. It is possible to do vigorous exercise and weights without developing any problems but you need to work up to that very gradually and make it your norm! Don’t do too much too fast. You can find more information about coping with lymphoedema on the Macmillan website.

But when you have pain in your arm before you start, how do you know when to stop. It’s been 13 weeks since the surgery and I don’t know what the difference is between healing pain and lymphoedema pain.

Hilary: Your surgery was quite recent and it’s not unusual to still be healing up. Lymphoedema would be uncommon at this stage in your healing. Perhaps sticking to the post op exercises you’ve been given at this stage would be sensible. You could also talk to your specialist for more advice or a physiotherapist referral?

Does manual lymphatic drainage (MLD) help reduce the risk of lymphoedema?

We don’t know for sure that manual lymphatic drainage prevents lymphoedema. The research about this just isn’t very clear at the moment. MLD is more often used with other techniques to manage lymphoedema. You can read more about preventing lymphoedema and treating lymphoedema on our website.


You can read the full article here: Life After Cancer Web Chat

Got Arm Cramps? Eat Bananas!

I’ve recently gone back to work on a part time basis to ease myself back in gently. My job is pretty much 90% computer based and as I’m right handed and my affected arm is my right arm, using a mouse has proved to be a bit tricky. I had no real problems on my first full day back, until the following morning when my arm practically seized up.banana As you can imagine, this was a bit of a concern.

I mentioned it to my local lymphatic specialist and after reassuring me that what I was feeling wasn’t the onset of lymphoedema but simply a case of the muscles becoming tired having been out of action for a while, he went on to tell me to eat more bananas to get my potassium levels up.

Apparently muscle cramps can be due to an imbalance in the body’s electrolytes – magnesium, calcium and potassium and/or a deficiency of vitamin E. To remedy this I need to consume either 200ml of milk, a small pot of yoghurt or a matchbox-sized piece of cheese, leafy green vegetables, small-boned fish such as sardines, orange juice, cereals and nuts. I also need to eat more bananas, pulses, garlic and onions, and fruit and vegetables in general, making sure my diet is rich in vitamin E by including things such as vegetable oils, nuts, seeds, avocados and sweet potatoes.

The other piece of advice he gave me was to get myself two physiotherapy balls, one for each hand of the same resistance – medium to low. I then need to hold one in each hand and squeeze them alternatively as slowly as I can, to about 60% of my ability, and then release just as slowly. I should repeat this 30-50 times in each hand every day. In doing this I am causing the muscles in my forearm and hand to contract but not be put under any strain, this will simply allow them to regain strength gradually.

Source: The Daily Mail