Is it lymphoedema?

I am worried I have the beginnings of lymphoedema.
I managed to do have everything they told me to be careful of
I flew to spain two weeks ago and I totally forgot about wear something on my arm, during the flight my scar started to really hurting. I could actually see waves being made across my scar heading towards my armpit. This carried on only for the first day so didn’t worry to much about it.
I then went and got bitten by a mosquito one bite on my bad arm and one bite near my scar(would love to know how the little bugger got there). The one on my side went really red and is still red, its never been hot. The one on my arm did get hot and very red but I had a cream from a previous bite that helped.
I then got sunburnt even with factor 30 on My skin was sensitive before chemo now its just silly.
On the flight home my arm started hurting and it hasn’t stopped. Just feels a little bit like a dead arm

The only thing that looks like its swelling is my chest and just under my armpit. I haven’t read anywhere about swelling on the chest. I hate phoning the breast care nurses, just because i don’t want to waste their time.
I am one year and three months post surgery with full node clearance.
T

Hi T Waterfall

I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime can I suggest you give the helpline a call and talk this through with a member of staff who will offer you practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Hi Waterfall.
I too am worrying I have the start of lymphodema. I am post mx and ANC (in August), My arm feels very tender (like sunburn) and I think is definetly bigger than the other side. It is also pink.
I am seeing aomeone on Monday for a prosthesis fit, I am going too see if I can see my BC nurse too.
I am a little unsure as to what the symptoms are? exactly. Perhaps others can post to tell us?

WS

Hi T and WS
I am really not sure if you have the start of LD but thought I would let you know my experience.
I had swelling in my arm mostly on the inside of my forearm but also some at the top of my arm. It felt heavy? not really painful and was not red.
I have LD very mildly only 15% but still have to wear the dreaded sleeve and glove really not used to them even now (was dx in June) but if it helps it getting worse!
I had an appt with my BS and pointed it out to her and she then referred me to the LD clinic so I would definitely mention when you go or phone your BCN if you haven’t got an appt due.
Good luck and hopefully it wont be LD
Jill xx

Hi lady’s I would certainly get it checked out as soon as possible.The sooner its caught the easier it is to keep under control.I’ve had lymphoedema for nearly 5 years and it is much better now and under control.When I was first diagnosed I had to wear a sleeve with a glove attatched and a gauntlit that went over the hand but now all I have is the sleeve and don’t have to wear it all the time. Heres a list of signs and symptoms.

Signs of lymphedema

Some signs of lymphedema may include:

  • Swelling in the breast, chest, shoulder, arm, or hand
  • Area feels full or heavy
  • Skin changes texture, feels tight or hard, or looks red
  • New aching or discomfort in the area
  • Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
  • Trouble fitting your arm into jacket or shirt sleeves
  • Bra doesn’t fit the same
  • Ring, watch, and/or bracelet feels tight, but you have not gained weight

All the best Melxx

Tolliebelle and stressy messy.

Thanks Stressy, the ‘Signs of’’ really helps, I do have one or two of those.
I will try to catch up with my BCN following the prosthesis fit tomorrow.

Thanks both
WS

Lots of really good advice here. I went to a BCC lymphoedema awareness day (really useful) and the nurse showed us some pictures and told us of a simple ‘self test’ which can help decide if it is the dreaded lympoedema or just ‘normal’ swelling. Basically you press gently but firmly on the affected area with the pads of two or three fingers for one minute (you can count this!) than take them away. If the skin bounces back quickly then it’s not lymphoedema, if the dents stay put, it probably is. This is no substitute for getting it properly checked, but may help you to decide how likely it is.

Revcat,

Wow! That’s what I wanted - something definative! That’s great. It is very hard to tell what is ‘Normal’ swelling post-mx and ANC (only done end of August) and the beginnings of lymphodema.

I will catch up with the nurse any way tomorrow, but will make a cuppa in a min and try the ‘self-test’.

I do hope your weather is being kind to you in Scotland, we have glorious weathwer here in The Pennines.

Thank-you

WS

Revcat,

Don’t know what has happenend there, but the post went weird just now!. In have just done the ‘Self Test’ and indeeed there are quite marked indents. It does not bounce back.

This is especially worrying for me as I am starting RADs in a different hospital on Tues.
I will definately catch up with my BCN tomorrow now.

Thanks

WS

Hi Wintersocks and Waterfall
I’ve been away so I’m late with this thread, but just to say. While you are waiting to get your arm checked there are a few things you can do to help. Try to rest your arm, and keep it elevated, drink lots and lots of water–that helps keep the lymph moving, periodically raise your arm as far above your head as you can and open and close your fist ten to twenty times. Deep breathing from the diaphram also helps, take a deep breath in through your nose until you can feel your lungs completely fill with air, hold for the count of three and then exhale.
The biggest concern with lymphoedema is the risk of cellulitis. I hope Waterfall in particular is taking care–if you feel at all fluey or feverish, go to A&E right away because only antibiotics can help with that.
Gentle hugs to all, don’t panic, it is bearable.
Q.

Quail,

Thanks so much. I will be doing those exercises tonight. I am trying not to panic, but as I have rads it really is the last thing I want to be having to deal with. it’s all just so never-ending and exhausting isn’t it.
But this is a great help.

Thank-you

WS

Mine showed up right before Rads too, and I think it was part of the reason I was so freaked out: just when there was light at the end of the tunnel! My onc acted like rads would make it worse, but it didn’t for me, so don’t worry about it too much.
Grrrrr, it IS exhausting and makes you mad doesn’t it.

Stressy - that checklist is really useful. I’ve had a miserable couple of weeks with most of those symptoms on the list. I pretty much diagnosed myself with google in the last couple of days- I didn’t immediately think of lymphoedema as the swelling etc is on the side of the chest and breast, my arm is absolutely fine. A bit annoyed that breast surgeon, oncologist, portocath-fitting surgeon and GP all failed to see what now seems quite obvious. They all thought it was some kind of infection in surgery site (cultures for infection come back negative). I’ve had two weeks of antibiotics and postponed portocath fitting and chemo .
I’m seeing GP again later, hopefully he can give me some advice - or at least point me in the right direction for help.

Ladies,

Well I went to have the prosthesis thing fitted today (what a weird thing that is! and much heavier than I thought it would be). I do hope I get on alright with it.
I mentioned to her about my lymphodema fears an she got the BCN, who got the Lymphodema nurse and she confirmed it is lymphodema. She has given me a weeks worth of anti biotics and I have to be seen by her when i have finished RADS (only starting tomorrow!)
I am little confused as to why I have the antbiotics but the arm is red and she said there was an infection too. But as it was not an appointment I did not feel able to discuss it with her more fully.
I guess I will just have to wait to find out what it all means.
Thanks to all for their help yesterday.
But I do feel rather down about it.
WS

Hi Wintersocks,
Down is normal. As I said, I felt the earth rocking under my feet and NOT in a good way. The antibiotics are because they think you might have cellulitis. When the lymph doesn’t move very well, it creates a perfect environment for bacteria to breed, which causes an infection of the skin which is called cellulitis. Cellulitis is very dangerous, partly because it can spread really quickly and consequently if it’s not caught fast enough can require hospitalisation for intravenous antibiotics. So she is hoping to nip that in the bud. If, after your week’s worth of antibiotics are nearly finished your arm is still red or warm or you feel a bit fluey-get to the gp–I needed two weeks worth to clear mine up. If you have any concerns at all phone the lymphoedema nurse or the bcn–they are there to help, and NOW is when you need it.
Lymphoedema is boring and never goes away–that’s the bad news. The good news–you won’t feel so down after awhile, and it can be controlled.
Vist the “Step-up Step-out” website (via google) for info on lymphoedema. It will tell you more than you want to know perhaps, but it is a mine of information, also the Lymphoedema Support Network (also google). And ask away here-we all know how it feels to have more questions than answers!
I am fond of my prosthesis, even though, being small-breasted, I more often than not go “loppy”. You should get used to it pretty quickly. But it was odd getting fitted for it. Didn’t help that my fitter told me she ran a marathon the week after her last chemo. Haunted me throughout MY chemo–I couldn’t walk to the corner without resting part way. I kept wanting to go back and give her a slap.
Q

Hi Quail,

Thanks so much for that. I did not realise that it could be so dangerous. I asked her if it would affect my rads that are starting tomorrow at St James in Leeds. She said no but to tell them. She also told me to start moisturising my arm. But it is too sore/tender to touch.

I guess if I am at all worried about it I can tell them at St James? (as have 3 weeks of rads now). I guess they will have a lymphodena nurse there. My usual hospital is Halifax.

Can I just ask you Q - does that mean now that i have this I will always have it??? has that been the case for you? I will look at the Step up Step out website as you say.

The prosthesis is so so odd/funny after that softie thing, I am quite large breasted and it looks huge. I don’t know whether to laugh or cry when I look at it!!!
Your fitter ran a marathon?? wow! - I don’t think I moved from the bed (practically) for 6 months before during and after chemo.
Your help/advice has been great and I really appreciate it - Thanks, as I wasn’t going to mention it. I just want to get in and out of anything that resembles a consulting room. My anxiety starts the minute I step in.
WSx

Hi Wintersocks,

I have put for you below the link to BCC’s publication Living with lymphoedema which you might find helpful to read.

www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-breast-cancer-bcc5

Take care,

Jo, Facilitator

Thanks Jo.

Hi All
I finished rads in Aug and thought all was going ok, I then developed cellulitis 5 weeks after finishing rads, whilst on holiday in Somerset, was given some antibiotics which did the trick. The area around my scar still gets puffy but doesn’t leave indents if I press it, I have seen my onc and he said it was still the effects from rads, he has now discharged me so will only be under care of breast surgeon who I see in Feb. I forgot to ask about a sleeve for flying, does anyone know where to get one, I’m not planning on going away until next year.
Jane

I just wanted to come on and say hello. I was diagnosed with lymphodena in both arms - two for the price of one!! I say this because I went with swelling in one arm, so was surprised to find I hide it in both ( I have had clearance x 2).
My swelling is in the hand and forearm on the right, and upper arm on the left. Anyone any tips for coping with the hand swelling. I have a compression garmet and mitten, but the difference in tension means I end up with a pad of swelling on the hand. Not sure what to do?
I had a really good leaflet about cellulitis and lymphodema. When I have a moment, will try and find it on line and post it. I was also given antibiotcics to keep with me at all times, and take on holiday. You can get the sleeves on prescription or a company called Sivigris but you would need professional help with sizing.
I also have regular blood tests due to underactive thyroid. GP says its fine to have blood from affected arm - can this be right?
Any help gratefully received…
Rattles xx