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How does it begin??

21 REPLIES 21
nymeria
Member

Re: How does it begin??

My BCN has been wonderfully supportive of me through everything else which is why I phoned her about this. I am just so confused about it all now but I will follow the advice regarding resting for a few days and see what happens because it is too painful to do anything other than moisturise and gentle stroking/massage. I'm also being really careful about keeping it on a pillow when I'm watching TV or reading.

If it isn't any better after the weekend I will phone the BCN again and ask if I can go in and see her.

I really want to get off the 'breast cancer bus' for a while now! 😞

Nymeria x

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Re: How does it begin??

Hi Nymeria,

You should not have to be going to your GP at all. Your BCN's not a star as she should be dealing with this for you ASAP. A good BCN would know by just looking at your arm whether or not you have Lymphoedema. If you are just going to wait you should do the Haven exercises, as someone said, moisturise your arm every day and keep it up on a pillow when you are sitting down. You could also do the gentle stroking to try and move fluid out of your arm. Start near the top and gently stroke up to your shoulder, move down a hands width and do it again, keep doing this until you reach your wrist. Then move around the arm a bit and start all over again. You should do this after the Haven and before you moisturise.

If it does turn out not to be Lymphoedema none of the above will do any harm.

Hope this helps.

E

nymeria
Member

Re: How does it begin??

I spoke to BCN this morning and she was of the opinion that a week either way wouldn't make a lot of difference and the advice to rest it was good. She said if it suddenly started to swell a lot not to bother going back to GP but to ring her and she'd try and get me into a clinic pronto.

So wait and see is all I can do at the moment.

nymeria
Member

Re: How does it begin??

LOL - thanks everyone! I was so peed off when I got home that I cried, as much from frustration as anything else! I was so glad to be going out this evening and spending some time with friends and NOT have to think about BC/LD but now it's late I'm sat here feeling all annoyed again.

I will give my BCN a call tomorrow and see what she says. She's an absolute star, so I know that I'll get some sense from her!

Correct me if I'm wrong but I was lead to believe that pain with or without swelling is often the first signs of LD and if it can be caught at this stage then it's easier to manage long term. I even said this to the stupid gp but he was having none of it, just thought that I'd overdone my post-op exercises, never mind that I've been doing them for 8 months and therefore I know how to pace myself.

Talk about bl***dy frustrating!

I'll be going into battle again tomorrow! 🙂

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Re: How does it begin??

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Re: How does it begin??

usual nightmare with trying to get a referal Nymeria. If it is lymphoedema and I do hope it isn't, you have our permission to go and slap that stupid gp round the head with your sleeve. I will never go back to the gp that talked a load of rubbish to me about it,I just think if he got that wrong what else will he get wrong too ! That gp wouldn't refer me either so I went back to the BCN even though they decided noo it wasn't lymphoedema by just talking to me on the phone,anyway, I just nipped their heads enough so they did refer me and hey presto it was confirmed. Good luck with the foot stamping.

nymeria
Member

Re: How does it begin??

Well I saw a doctor this afternoon, not my usual one as he's on holiday and even though I pretty much threw a tantrum he refused to refer me for a specialist assessment, insisting that it's tendonitis. I am in so much pain and I pointed out that whilst there isn't much of it, I do have some swelling on my upper arm but he said that was just inflammation. It has been left that I have to rest it for a week and then go back. When I do it will be to see my usual GP who is far more understanding and informed.

Very frustrating! 😞

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Re: How does it begin??

Funny - I was chatting to an old Uni mate of mine this evening - she is a GP now. I told her what my GP had said, and she told me to just deal with the breast care nurses as they would know more about it than her! Plus she said female GPs often know more as women tend to try and see female GPs with breast lumps. Actually this friend DID know more than either of my male Uni mates who are now GPs!!

Just waiting for my appointment here - but it is lymphoedema - I get marks in the fluid if I roll my sleeve up to do the washing up etc.

I am off to read the Haven stuff now.

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Re: How does it begin??

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nymeria
Member

Re: How does it begin??

Spoke to my BCN this morning and she wants my GP to assess it first as it could be just muscular and some physio would fix it. If my GP thinks that it's LD developing he can refer me directly to the specialist clinic.

nymeria
Member

Re: How does it begin??

My arm is extremely painful this evening so I'm now quite worried. I will be on the phone to my BCN first thing tomorrow.

Keep your fingers crossed for me!

Nymeria

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Re: How does it begin??

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nymeria
Member

Re: How does it begin??

Hi Manny,

Yes, I think I will ring my BCN on Monday just to be on the safe side. I'd rather err on the side of caution and as it's only just started getting something done sooner rather than later is probably best. I didn't want to end up feeling like I was worrying over nothing but now I've thought about it, phoning the BCN it definitely a good idea! 🙂

Let's hope we are both wrong about it being Lymphoedema!

Nymera x

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Re: How does it begin??

Yes - it is sort of a sensation of something being odd isn't it? I often get pins and needles if I have been doing a lot.

I am certainly not as careful as I 'should' be about the lifting side of things, but I have a 13 mth old and a not-quite 3 year old. What can I do?? I have to lift them sometimes, and indeed, I want to lift them sometimes. It is part of my role as their Mummy.

Nymeria - yes - I would contact the BCN about your symptoms. Any issues after BC treatment need prompt attention and treatment.

I know lymphoedema is chronic if it does develop - so I thought prompt attention and management - and it if *does* turn out to be nothing then I haven't lost anything. I can always cancel can't I?

vivrog
Member

Re: How does it begin??

Hi Manny

I do sympathise. I have just been measured up for a made to measure sleeve and I took the form to my GP to write out a prescription. She phoned me back and said she had no idea what to do with!! She has now left a message on the answerphone of my lympho nurse for Monday....I despair.

Viv x

nymeria
Member

Re: How does it begin??

I've starting getting pain in my upper arm and my under arm area at the top my arm has started to feel 'odd' and slightly heavy. It's very reminiscent of how it all felt immediately post surgery when I had mx & anc 8 months ago. I'm also finding that it is getting harder to do my exercises as I'm noticing some pain and resistance.

I'm very careful about not carrying heavy stuff on my treatment side and don't think I've done anything out of the ordinary as I've been very careful.

Just wondering now if I should be talking to my BCN about this???

Nymeria

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Re: How does it begin??

Oh dear Manny,another clueless gp, mine told me it was mastitus and gave me antibiotics and wouldn't give me a referal,the bcn nurse told me it was the effects of rads and would settle down.However, I knew it just didn't feel right, my arm was heavy and ached and my boob had changed too and my side felt weird when I bent over.

If it is lymphoedema it won't just go away ,chase it up and stamp your feet,the sooner you get seen by someone who actually knows what they are talking about the better. Yup tis a pain,but it can be managed,there are a few of us lymphomaniacs around so you are not alone. Good luck xxx

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Re: How does it begin??

Thanks ladies. I did call my BCN and she thought it sounded like lymphoedema, but said that it is early days and it may still all settle down. Hmmmm. I have a horrid feeling it is not going to do that and this is only the beginning.

She thinks the pain aspect is cording, and I have read a bit more about that now, and it probably is.

She told me to get an early referral to thenlymphoedema clinic, so I saw my GP and he was utterly ridiculous about it. Wanted me to try ibuprofen for 2 mths first to see if it is just muscolskeletal!! Honestly - what form of sports does he think I have been doing post surgery to injure it in that way!!

I told him he was ridiculous and asked for the referral (politely - I am very good at talking to doctors!!).

The swelling is closer to my wrist now, so I am quite sure I do have some lymphoedema sadly. Still very subtle at the moment.

So just waiting until the appointment comes through, but will try and chase it up next week when I start radiotherapy.

Guest user
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Re: How does it begin??

Hi Manny
My hands always use to swell if it was warm and we'd done a "big walk" 12 or so miles. I realised I'd got lymphodema when the swelling started in my hand without doing a walk and it was only in one hand. Basically my knuckles disappear. When it is bad my whole arm aches especially my upper arm underneath. Apparently that is caused by fluid pressing on nerves.
Five years on I know if the gap between my little finger knuckle and my ring finger knuckle disappears I know it's time to wear my sleeve for a few days and take it easy.
Hope that helps.
You must get it checked out to get it sorted and learn how to manage it.
happy days.
Chinook

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Re: How does it begin??

Hi manny

Definitely call your BCN and ask to be seen by someone who knows. I have mild LD in my affected arm and the first I noticed was a small but defined swelling on the inside of my arm just above the wrist

Take care

Andie

oldandlumpy
Member

Re: How does it begin??

bump

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How does it begin??

How did your lymphoedema begin for you??

My arm has been painful for a few weeks - tender over the inside of the arm down as far as the wrist - starts a bit above the elbow. It is not the shoulder or shoulder movement that is painful.

I noticed this evening a patch of swelling developing over the inside of the elbow, quite localised, but definately there.

The pain felt the same as pain I had from phlebitis from the chemo in the other arm. I had chemo pre surgery so both arms were used and both did get irritated veins.

I had a L1/L2 clearance.

I will call my BCN tomorrow, but worried this is the start of trouble, or due to the pain, am i getting this all wrong??

I have had to more heavy lifting than we 'should' since my surgery (5 weeks ago) but my children are 13 mths and 2.5. How on earth do I avoid lifting completely?? And they are certainly heavier than a shopping bag! I do carry on my left hip and my unaffected side though - but the initial lift obviously involves both arms.

Ugh. Not sure i want this.