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Is this the start of Lymphodema

15 REPLIES 15
Claire2s
Member

Re: Is this the start of Lymphodema

Yes, I avoid carrying anything heavy.

The tingling and pins and needles might suggest more nerve issues rather than Lymphodema.

Are you still doing your exercises? They will help with any healing.
charlotte457
Member

Re: Is this the start of Lymphodema

Thank you so much, Claire2s. Why do you avoid food shopping? Is it carrying heavy bags?

 

Good to hear you're doing so well.

Claire2s
Member

Re: Is this the start of Lymphodema

Charlotte, you sound so worried about lymphodema. Please don't be and I wouldn't change any advised treatment to avoid it. I do have lymphodema and it is completely manageable. I did have to wear a sleeve and a glove but don't any more. I have a 2 year old and am perfectly able to cope with her. I also work part time. The only thing I particularly avoid is food shopping - no great problem there! I am careful gardening and keep it covered in the sun.

You could have lymphodema but so close to your surgery what you are feeling could well be surgery related.

If you do have lymphodema you will be referred to the local nurse. My gp referred me, maybe go to see your go?

I hope your rads go well.

C xx
charlotte457
Member

Re: Is this the start of Lymphodema

Just to add...

 

There were no pain or mobility issues, and I haven't had a seroma or any numbness under the arm. There was a very slight, almost pins & needles feeling in the forearm & back of hand..

charlotte457
Member

Re: Is this the start of Lymphodema

I had WLE & SNB on 4 Jan 2017. I'm on the verge of going for breast radiotherapy only, plus hormone therapy, in an attempt to avoid any lymphodoema and arm problems. But I just read that breast rads can give you arm lymphodoema; and the more I researched on lymphodoema, the more I wonder if I've already started it.

 

I had an episode of swelling in the surgery-side arm 22-24 days after surgery. The arm just felt different, and I couldn't tell if it was really numb so at my husband's suggestion I shut my eyes and he dabbed the back of both hands with different numbers of fingers: I got the number right every time. But later on I noticed swelling in my wrist and forearm (can't remember about the back of my hand). I was worried but put it down to overuse. The next day it was gone.There wasn't any pain with the swelling, just a feeling of the arm being puffier.

 

26 days post op, the arm & back of the hand were swollen again, and I talked to a nurse about it by phone (getting a breast care nurse had been a complete lash-up, really, until then). She said with only one lymph node removed it would be very rare for it to be lymphodoema, and was more likely to be the result of nerves healing after the operation.

 

Any opinions? I was already raising lymphodoema as something I was trying to avoid, so I wasn't going to treat the axilla even though the sentinel node was positive. I was willing to trade off the uncertainty about anything else being in the nodes, against an increased risk of lymphodoema. What the heck do I do if I've already got it?

 

Nobody seems interested in lymphodoema, and I haven't even found out where the local centre is or how you access it. They just tell you about it when you give consent and er... that's it. When I raise it, they say most people don't get it.

Woo1863
Member

Re: Is this the start of Lymphodema

Thankyou. This has helped me make a decision. I think! 🙄

Claire2s
Member

Re: Is this the start of Lymphodema

I had no choice about having mine removed as I have Inflammatory breast cancer. It seems a strange choice to give you.

lymphodema can be a pain but I always remind myself that it is not cancer than I am fighting anymore: just side effects of the treatment.

You do not def get lymphodema if you have your nodes removed and on the other hand you can get it just through having radiotherapy.
Woo1863
Member

Re: Is this the start of Lymphodema

Hi,did you have the option of lymph removal? I had masectomy last week and it has spread to nodes too. Now being given option of just chemo and radiotherapy or lymph removal together with chemo and radiotherapy. Possible side effects of lymph removal is putting me off this option! They want answer quickly, but so unsure what to do.
Claire2s
Member

Re: Is this the start of Lymphodema

Hi Elie

The pain I get from my lymphodema is not as bad as yours I would say. It is mainly discomfort with some pain.

Could it be pain from your surgery? Sometimes nerves can be damaged that give pain. If it is that then you could prob do with some different pain relief.

Could you phone your BCN? They might be able to help a bit more.

I hope you get something sorted and kick that pain into touch!

C xx
ellie49
Member

Re: Is this the start of Lymphodema


@Claire2s wrote:
I have started to get spots on my upper left arm. This is the side that I had axillary node clearance along with a mastectomy in June 2015. These spots are quite pronounced and are whiteheads (sorry -yuck). I am worried that this could be the start of Lymphodema? Anybody else experienced this?


Hi could do with some help on lymphedema. Been to see GP this morning, as for the last 2-3 weeks have had pain and ache in my arm and hand, having to take paracetamol and ibuprofen every two hours, not helping. The doctor thinks it may be the start of lymphedema and is arranging an appointment with there clinic. At this stage I don't appear to have any visible swelling, is this usual. I can't believe how painful this is, could cry, just as you think you are over treatment and this happens. Would love to hear from anyone in a similar position. Thanks ladies x

ellie49
Member

Re: Is this the start of Lymphodema

Hi could do with some help on lymphedema. Been to see GP this morning, as for the last 2-3 weeks have had pain and ache in my arm and hand, having to take paracetamol and ibuprofen every two hours, not helping. The doctor thinks it may be the start of lymphedema and is arranging an appointment with there clinic. At this stage I don't appear to have any visible swelling, is this usual. I can't believe how painful this is, could cry, just as you think you are over treatment and this happens. Would love to hear from anyone in a similar position. Thanks ladies x

Kim555pink
Member

Re: Is this the start of Lymphodema

I'm just back from my first appointment with my lymphoedema therapist.
Had surgery beginning of December with 9 nodes removed and noticed swelling/puffiness in my hand and lower arm the 3rd week of my first FEC chemotherapy with mild achiness. 2 weeks later I had an appointment with my surgeon and BC nurse and mentioned it to them and I was referred. There really wasn't much to show them at that appointment, the swelling had gone down. But if you compare my wrists, one is bony and the affected one isn't.
So at today's appointment, the therapist measured around my hand and all the way up my arm and probably 5 cm intervals and compared the reading with my good arm. She showed me how to gently massage the whole hand and arm and gave me exercises to do at home as well. She then fitted me a compression sleeve that covers my hand too (leaving my fingers free) and goes up to nearly the top of my arm (I have really long arms!!) I'm to start off by wearing this 2-3 hours a day, although I've been wearing it longer than that today, it's quite comfortable weirdly - then again I never minded wearing the compression socks in hospital either! She's ordered me another the same and a lighter one to try which I'll get in the post.
As chemotherapy tends to mess up your body's ability to deal with stuff, my next appointment is going to be when I'm finished and before radiotherapy as that is likely to aggravate it further.
Hopefully because it's been treated early while mild it won't become more troublesome, it's good it was taken seriously.
Hope this will be of help to anyone finding their way to this thread 🙂
Xxx
Claire2s
Member

Re: Is this the start of Lymphodema

Hello. Just invade anyone searches for Lymphodema and finds this post I thought I ought to post that I have subsequently been diagnosed. Best get anything checked out ...
Rattles
Member

Re: Is this the start of Lymphodema

Hi Claire, I have lymphodema and it's characterised by swelling, heaviness and aching. I haven't heard of 'spots' as such, but in the breast it can sometimes look like a peau d'orange. Why not call the Helpline? What you are describing sounds unusual for you so worth getting it checked. Good Luck! Rattles

Lizzy_BCC
Member

Re: Is this the start of Lymphodema

Hi Claire2s, 

 

I am sorry you are going through this anxious time. I am sure some of our users will be along shortly to offer their support.

 

In the meantime do give our support line a call at 0808 800 6000 who will be able to talk to you about Lymphodema and offer a friendly ear.

 

Best wishes, 

 

Lizzy 

 

Digital Community Assistant 

Claire2s
Member

Is this the start of Lymphodema

I have started to get spots on my upper left arm. This is the side that I had axillary node clearance along with a mastectomy in June 2015. These spots are quite pronounced and are whiteheads (sorry -yuck). I am worried that this could be the start of Lymphodema? Anybody else experienced this?