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breast lymphodema

117 REPLIES 117
lavendersblue
Member

Re: breast lymphodema

Thanks for the url Bahons2 , the wraps look interesting...though my boobs are so big I am not sure when / where you could wear them ??? Certainly no support there....maybe in bed ???

The pads look similar to some ridged foam pads that I have been given to wear inside my bras....that are supposed to help break up the fibrosis....not sure that it is working...it just seems to leave me with huge ridges ...but still ...will keep on trying it out !!Maybe worse without it , you never know ?

I have both my ordinary bra and my compression bra on today...and all I can say is... phew !!! Feel like a trussed chicken in the oven...not helped by Arimidex hot flushes...LOL. What joy.

Glad to hear that you are recovering from the chemo.....hope you get your scan soon ...and that the results are good.

Hugs,
Jill. xx

Bahons2
Member

Re: breast lymphodema

Hi all

Glad to hear that you have already got your compression garment, Jill.

It sounds jolly uncomfortable and a tad Heath Robinson to wear an ordinary bra underneath. I hope the bra isn't one that already digs in around your lymphoedema. However, it's worth a try to see if it helps, isn't it?

Hope the moderator will let this link stand:

http://www.stepup-speakout.org/breast_binders_lymphedema.htm

(Perhaps your lymphoedema nurse might consider one of those).

I'm recovering well from the chemo thanks Jill; haven't had the scan yet tho'.

X to all

S

lavendersblue
Member

Re: breast lymphodema

I have been for my second session of MLD today and the nurse suggested that although I have a compression bra...have had it for just a week .....I wear my own bra underneath it .

My boobs are very heavy ( not helped by the Lymphoedema now ) and as the compression bra does not give me good support...gravity is causing the fluid to gather round my nipple area...and that is where I have a lot of hard tissue.....sounds sensible...I shall just feel like a trust up chicken...

Jillie I am only one year down the line from my ops ...but find I cannot lie comfortably on my bad side .

Hope the latest scan was good news Bahons2 , and that you are recovering from the chemo.

Hugs,
Jill xx

Bahons2
Member

Re: breast lymphodema

Hi Jillie

It does sound as tho' you might have lymphoedema.

Hopefully your GP should be able to refer you on to your local lymphoedema clinic. Don't be surprised if he/she doesn't know much about it, however; they are taught very little about the lymphatic system at medical school. One thing your GP shouldn't do is prescribe you diuretics for it.

It's not a good idea to sleep on your 'bad' side if you can avoid it. But it can be horrendously difficult to do, especially if that is the side you like to sleep on and you roll over onto it when you are asleep.

I've got two 'bad' sides, both with lymphoedema. Altho' I can sometimes fall asleep on my back, I find that difficult to do. To be honest, I sleep on my least bad side. I'm at my most comfortable nearly horizontal on a recliner chair in the lounge! Zzzzzzz (Arms supported on the chair arms - bliss).

Wishing you a speedy referral.

X

S

Jillie59
Member

Re: breast lymphodema

Once again, there's such comfort in these postings!

I'm six years on, off Tamoxifen but think I have lymphodoema in the breast. It never has felt totally good - my bra feels really tight, upper arm is uncomfortable and there's a sharp pain now and then. Much better with bra off, but I still have quite heavy breasts and it doesn't look good! Am going to see my GP soon.

I had WLE, chemo and rads. Does anyone else at my stage still feel uncomfortable lying on that side for too long?

Apart from that, am feeling good.

Bless you all.

Much love

Jillie x

Bahons2
Member

Re: breast lymphodema

Thanks for the good wishes, Jill.

Hope the fitting/collection goes well today and you come away with something that will make you a lot more comfortable.

X

S

lavendersblue
Member

Re: breast lymphodema

Hi Bahons2 ,

Thanks for the info...I am not sure who is the maker of the one ordered for me...but it does look like the one on the site that you sent. I go on Monday to have a fitting..or collect it whichever ? I asked for a black one...and for the narrow straps ...to try an make it seem more normal...LOL . I have very big boobs....so just cannot go without a bra...all far too uncomfortable ...not to mention unsightly as my boobs are of two very different sizes these days . So far although my arm has got slightly bigger...the lymphoedema seems to remain in my breast.

I am so sorry to hear that you are back on Chemo again....I presume this means that you had further problems...hope your next scan brings you good news.

Hugs,
Jill xxx

Bahons2
Member

Re: breast lymphodema

Hi Jill

I have one. It is a Medi lipomed.

You can see what one looks like at:

http://www.mediuk.co.uk/sitebuildercontent/sitebuilderfiles/medivascularcat2009.pdf

(It's on page 48, btw)

Mine's white. It's very, very comfortable. I was given it after I made a fuss at my lymphoedema clinic. At the time the side with the WLE was swollen and it certainly helped. That swelling eventually went down, but now, 5 years on, I'm having Taxane chemotherapy and it it just homes in weak spots in your lymphatic system. Coupled with the fact that my Portacath is buried in the recon on the other side, each time I have chemo, my right side and shoulder blade puff up. So I either wear the Lipomed bra or I don't wear any kind of bra at all. I think going without a bra helps slightly more for me (but there are times when I can't do without something), but the Lipomed certainly doesn't do any harm at all.

I think one lady on here described the effect on your silhouette as producing a 'monoboob' and I'd certainly go along with that. Everything in front gets squashed together. That said, it seems to basically do what it says on the tin. It's not the most beautiful piece of lingerie in the world, but it's a darn sight less ugly than the armsleeves and, of course, a lot less visible.

Hope this helps a bit....

X

S

Hope this helps

lavendersblue
Member

Re: breast lymphodema

Hi Everyone ,

Have been quiet for a while , as I have been having a few gynaecological problems.

I went to the Lymphoedema clinic the other week to be measured up for a compression bra....and am waiting to see what it will be like. Anyone else have one of these ?

I also have 4 sessions of MLD booked for the next few weeks so am hoping that will help .

Hoping everyone else is keeping well..

Hugs,
Jill

Bahons2
Member

Re: breast lymphodema

Plastic surgery for lymphoedema!

OMG!!!! Where do they get these people from??????

Congrats on the good mammogram results, Laine. Have replied more on your other thread.

X

S

devagirl
Member

Re: breast lymphodema

Hi all

Had my 3 year checkup yesterday. When it came to the physical examination I asked her to go gently as the breast is tender. She didnt take any notice and as she is a big, strong handed woman it really hurt. When I went to bed last night I could see an area of bruising underneath the breast and on the upper arm inside. Her suggestion for the oedema? Plastic surgery!

Best wishes, Laine.

lavendersblue
Member

Re: breast lymphodema

Hi all ,

Had a very positive time at the Lymphoedema Clinic yesterday . I was examined and assessed , then given some MLD . I will go back for some sessions of MLD too, waiting on appointments for that.

The physio was wonderful and understanding and gave me a piece of ridged foam to wear in my bra....helps to massage the skin gently through the day.

Then she gave me illustrated leaflets about keeping up the SLD at home....plus some Tai Chi exercises , and some arm execises ... although I don't have it in my arm...when measured my left arm was bigger than my right..so it will hopefully help to keep it in check.

I am allergic to plasters , so she put a bit of Kinaesthetic tape on my arm, if it doesn't cause any allergic reactions , she will try some of that on mt boob next time.

It was all very helpful and positive, how I wish I had got there 3 months ago.....

You too sound to have had a good session Sandra, hope you are feeling the benefits....

Hoping everyone else is keeping OK

Hugs, Jill

sandra44
Member

Re: breast lymphodema

Hi all,managed to get a couple of appointments due to cancellations.The first was today,oooohhhh,I just thought that I'd have my boob massaged a bit....wrong !Had to strip down to my panties !
The manual lymphatic drainage that I had involved a massage(with talc,to let the hands glide)started at the neck,shoulders,boobs, side
abdomen,groin then over to have my back done.Was there for a good hour and feel absolutely wiped out now. Obviously my sluggish lymphatic system has had a rude awakening !
Have been told to lay off wearing my sleeve as it has been making part of my hand swell alarmingly,will keep you posted on that.Back again on Friday morning for a repeat performance.

Sandra x

lavendersblue
Member

Re: breast lymphodema

Laine , my breast surgeon diagnosed my lymphoedema...then walked out of the room....great !! I too have orange peel skin, hard lumps and dents...very swollen and sore under my arm round my axillary scar..and I am in pain most of the time.

Helen , Hope your Cellulitis improves and that the antibiotics do the trick.

Sandra, it seems to be the norm . I waited over 3 weeks last year for the results and then got the dreaded re-call . I wasn't worried then of course....just expecting everything to be normal.

Talking of smear tests, I have been on Arimidex now for 5 months and have noticed some "spotting " , not sure how normal this is and who to go to for advice , BCN , GP or Onc ...any suggestions ???

Hugs, Jill.

river
Member

Re: breast lymphodema

Hello, I've been hoping someone else would have the same as me. My GP diagnosed cellulitis last Weds and it was confirmed bu my consultant on Tuesday. The antibiotics have improved it a bit - the heat has gone out of it but I'm more comfortable without a bra. I've got a hard lump where my segmental mx was done, which first of all had a seroma which was drained and now there's a swollen lump, which he aspirated old blood from. I had cording too - succesfully treated by physio. And I too had a smear yesterday and it hurt so much I cried - the first time I've managed to cry since dx in July.
I find this forum so helpful and know I'll be joinin g in more as the months go by...
sorry for butting in on a slightly unrelated forum...
love
River

Helenofherts
Member

Re: breast lymphodema

I went to the Lymphoedema clinic yesterday, I've been told I have Cellulitis. I've been put on a 14 day course of antibiotics and given an appointment to go back near the end of the course.
Today I had an ear syringed and a Smear test, the fun never ends 😉

Helen xxx

sandra44
Member

Re: breast lymphodema

Omg Jill, is that the norm ? That sounds like a hell of a wait,I just assumed that it would be the same as when I had my triple assessment at the start and would get results then and there....Fingers crossed for you,am not looking forward to mine and it's not til March ! Lol.

Got squished into a sleeve and got a spare one, no talk of bras she said that it was easier to treat breast lymphodema than arm so once I start going there for my massage it should ease and then they will just keep on top of it.Was trying to fit me in before November ! I'm being a bit more vigilant in doing self massage as can't say that I have made friends with my sleeve yet,early days.....

Sandra x

devagirl
Member

Re: breast lymphodema

Hi Gill

I forgot to mention on the other thread that I also have breast oedema and I am 3 years past dx. The only thing my onc did at my appt in June was pull a face when he saw it and tell me that I would have it for years to come. It is swollen - yet strangely pert which it never was before! - and there are patches of hard skin and orange peely bits. Most of the time it doesnt hurt but on occasions I get sharp, jabbing pains and its always going to be a bit tender. I was offhandedly told that I could see a specialist nurse but shes miles away at the place I had rads (which I hated) and that would mean hospital transport(which I loved but dont want again!

Best wishes Laine

Helenofherts
Member

Re: breast lymphodema

Oh Jill, the bloody WORRY is never ending isn't it. I hope you don't have to wait too long for the results of the Mammogram.

All the best

Helen xxx

lavendersblue
Member

Re: breast lymphodema

Helen , hope all goes well for you on Thursday...you have done really well to be seen so soon.....I have been waiting since May !!!!!! Hope it is nothing more sinister than Lymphoedema...though that is bad enough .

Sandra, hope the sleeve helps...have they suggested a bra to you ?? My leaflets say that these can be offered ( at a price of course ) .

Well I went along to my Mammo this morning...after only managing 3 hours sleep !!! I asked the nice kind person if she would do my good side first .....so that once my bad side was done at least it would be all over. She was wonderful I have to say...very careful...very gentle and considerate at all times.

The biggest problem was that after she had done them all she said she would have them checked before I left.Then she came back to say she needed to do one more of my good breast before I left....Ooer ...very WORRYING , as they did this last year on the breast that had the cancer. Now I have to wait up to 4 weeks for the results...which will come by letter she said . So of course now I am worried that the cancer has spread to the other breast....

Hope everyone else is keeping OK.

Hugs, Jill

Helenofherts
Member

Re: breast lymphodema

Hi ladies,
I developed mild Lympoedema in my right arm after surgery, had lumpectomy, SNB and then a mont later the rest of my armpit nodes removed. Wasn't too bad during chemo or rads which finished in July but a couple of weeks ago after I'd been "over doing things" I noticed that apart from being in discomfort in the boob-armpit area ,my boob was lumpy, orange peely and a bit hot but not near my lumpectomy scar. I got back to the Lymphodeama clinic at my hospital and was told there was a 7 week waiting list, then she said she could fit me in this week, Thursday, what luck. I'm actually hoping it's Lymphoedema and not anything more "sinister" I'll let you know how it goes.

Helen xxx

sandra44
Member

Re: breast lymphodema

Hope you had a great hol Jill,good luck for tomorrow and fingers crossed. I'm sure I will be a jittery pants when i have to go for my first mammo post dx too, think that will always be the case, lots of not so pleasant memories.... will be thinking of you,big hugs.

I'm back at my lymphodema nurse on Wed to get my not so lovely sleeve,am glad to be going as things seem to be getting worse...not with my arm tho but my boob.Mine too has swollen more and getting heavier and all lumpy bumpy.Hmmm I too had a seroma,boob exploded just after I had my stitches out....hadn't heard about that link before,hey ho.
Will keep you posted on how I get on,good to hear you have got your appointment at last,catch up soon.

Sandra x

lavendersblue
Member

Re: breast lymphodema

Hi everyone ,

Back from my hols and dreading tomorrow.....my first mammo. I found it difficult to sleep last night , I was so worried...so expect there will be even less tonight .

I have to say in spite of being told that swimming was good for my breast lymphoedema..it doesn't seem to have helped at all. In fact I would say that the pain is worse....as is the swelling...I now have a mixture of lumps and dents when I take my bra off and in the morning when I get up.

Jellylegs you may have a seroma ( a collection of fluid )...as you are so newly post surgery...it may need draining. I had one of these and went back to the breast ward , where they drained it and put me on antibiotics....as I was due to start my chemo . I was also interested to read that having had a seroma put you at more likely-hood of getting lymphoedema .

Sandra , I now have a new appointment for the clinic , on Tues 29th so am hoping they will be able to help when I finally get there...only 2 months late !!!

Will reprt back tomorrow and let you all know how it went...

Hugs, Jill

sandra44
Member

Re: breast lymphodema

Hi Susanne, lol, here we go again with different advice. My lymphodema nurse showed me to self massage,starting with going down the neck then open up nodes in good armpit,sweep over good breast then sweep over affected breast across to good armpit,then massage bad armpit then sweep down bad arm into armpit. OOOOOhhhhh the hokey cokey........
She likened it to having a blocked drain,the fluid just needs to be encouraged to find a new pathway to drain.Think I need a good dose of unblocker to shift this tho ......Hope all your lumpy bumpy bits aren't giving you too much bother......

Sandra x

Susanne_A
Member

Re: breast lymphodema

I've had lymphodema in my breast virtually since my WLE. It's quite swollen and pinkish, nipple is pale, skin quite pitted - but it isn't painful. I finally got myself referred to the lymphodema clinic - they told me to gently massage it DOWNWARDS (I had thought upwards.) Also wearing a very supportive bra helps. The surgeon said rads could often make it worse, or occasionally better - in fact it does seem slightly better (I've had 7 rads so far) or that could be because of the massaging.

Bahons2
Member

Re: breast lymphodema

Hi Jellylegs

Just wanted to say more or less what Sandra mentioned; it's very early to be getting lymphoedema. Altho' it occasionally does happen straight after surgery, it's much more likely a bit further down the line.

Keep an eye on it and mention it to not only (if you don't have much confidence in her) your bcn, but your surgeon as well. It could well just be post-op trauma.

X

S

Jellylegs
Member

Re: breast lymphodema

Hi Sandra44, Thanks for the help.Unfortunately the hardness seeems to have appeared over the last few days,just under my boob and to the side near arm pit. Keeping my finger crossed its just from the surgery.Your bcn sounds like the ones at my hospital lol.
When I had my blood taken the nurse said "Breast cancer..its just like catching a cold,load of women get over it" She's obviously never had it....I know I'd much rather have a cold!!!!

sandra44
Member

Re: breast lymphodema

Jellylegs,I didn't develope lymphodema til 10 weeks after rads,am no expert in the matter but you best speak to your bcn,tho mine was a bit rubbish ! Lol, if you only 18 days post op you might just be experiencing post op swelling or was it ok and now getting worse? The area around my WLE has always stayed a big hard lump,think it's just internal scar tissue but rest of breast after firming up post rads started to soften again then my boob started to feel heavy and just not right.
It feels very tender now and am not looking forward to it being squished at the mammo but it's not til March and I didn't have a prob with them at first mammo and I have the pain threshold of......hmm something with a very low pain threshold !

Gosh Jill,you are getting the runaround there,what a pain...literally and otherwise ! Good luck with it all.How are you getting on with it? I have been doing my self massage twice a day and can't say I have noticed much difference,am ok during the day but it's at night that it just goes rock hard and lumpy bumpy and generally sore and uncomfortable,is that the same for everyone?

Hope you are all doing well.

Sandra x

Jellylegs
Member

Re: breast lymphodema

Hi I've recentley had a WLE 18 days ago and my breast still seems very hard and has an orange peel effect. Looking at the past posts it looks like Lymphodema!!! What exercise helps. Dreading Rads!!

Anthi
Member

Re: breast lymphodema

Hello again Jill

How nice - I love France. I went to Provence in June and had a wonderful time. I used loads of Factor 30 - especially on my boobs.

Infuriating about your appointments. Hope you get them sorted out OK.

Best wishes everyone.

Anthi x

lavendersblue
Member

Re: breast lymphodema

Jan , I am like Anthi and have Lymphoedema in my breast without having it in my arm....so that makes at least three of us !!

Soulgirl...great news that your results are satisfactory...what a relief.

Thank you to everyone for all your encouraging accounts of Mammos with BL . I will cross my fingers and hope mine is no worse than any of your experiences.

I got a letter from the hospital in Otley to say that my appointment for the Lympho clinic is...wait for it.....yes... on the same day and time as my mammo...would you believe it ??? So I have had to ring and ask them to change it .... grrrrrrrrrrrrrrrr I can't believe that this is proving to be so difficult and taking so long ......I shall start to take it personally soon...LOL

We are going to France Anthi....down in the south near Nice...so will have to stock up on the Factor 50.

Hugs, Jill

Jan
Member

Re: breast lymphodema

Hi

Thanks Anthi. I'm sorry to hear about your lympho but at least I know of someone else who only has it in their breast now.

Jill - I had my first mammogram after surgery last January. My breast was very painful and I was really worried about it. The radiographer was really kind and said that she would only compress my breast as little as possible. I find that the radiographers are very kind and understanding if you tell them your worries. It is an anxious time though and I'm already thinking about my next one.

I hope you have a good holiday. Let us know how your mammo goes.

Love

Jan x

soulgirl
Member

Re: breast lymphodema

Hi Lavendersblue I was dreading my 1st mammo after surgery due to having breast lymphodema and dont know if it was just me but it wasnt as painful as the 1 I had last year, think I just expected it to be cos of the tenderness and swelling. I have had 3 sessions with the lymph nurse and cant believe the results, its so much more comfortable and the lymph fluid is moving, my skin is still a bit orange peel looking but getting better each day. Hope you find relief as quickly as I did 🙂

I got my mammo results today and they are satisfactory, so good news.

Take care ladies x

Anthi
Member

Re: breast lymphodema

Jan - I got lymphoedema in my breast without getting it in my arm so your BCN is certainly wrong about that.

Jill
I've now had a couple of mammograms since surgery. I've always found them painful - even before BC as I've had benign breast disease for years. Now post BC and WLE the mammograms are still painful - probably more so. However they don't seem to make the breast lympoedema any worse.

Good luck and have a great holiday. Where are you going?
Anthi x

lavendersblue
Member

Re: breast lymphodema

I now have an appointment for my first mammogram...a year after my first operation... this will be on the 22nd Sept.

I am wondering how my boob is going to hold out during this ??? How has anyone else coped with this .

As I am away on holiday until the 19th Sept I won't even have time to have visited the Lympho clinic...so can't ask for advice there either !! I have to say I am really dreading it.

Hugs,
Jill

Jan
Member

Re: breast lymphodema

Hi everyone

Thanks Jill I didn't think I was old in fact I seem to remember when I was dx, the surgeon making a similar remark to yours - that I was young and fit!!! I'm glad that you seem to be getting somewhere if very slowly.

I was told when I was dx all about lympho, what to do and what not to do and when I went for my first rads appt I was told again and shown how to do lympho massage. I was told however that you can only get lympho in your arm. When I suggested to the BCN that I thought I had lympho in my breast she said it was possible to get it in your breast but only if it was already in your arm.

One thing I hate is being fobbed off. I would rather they say 'Sorry you've got lympho. There's not alot we can do about it because we don't have the resources or expertise to treat it'. Then we'd all know where we are. I hate this doubt. Only one doctor has told me I have lympho and that was the plastic surgeon last December. He advised against operating to even my boobs up because he said that my lympho boob was unstable and could change over time.

When I told my BCN she said it wasn't lympho more like oedema!!

I don't have cancer but I now have a lot of pain which I didn't have before!!!

Sorry for ranting. It's so good to be able to come on this forum and just put down how you feel knowing that you all understand.

Thanks everyone.

Jan xxx

Bahons2
Member

Re: breast lymphodema

Hi Rhian

You are so right....

This is a brilliant thread:

http://community.breastcancer.org/forum/64/topic/738062

It's entitled:

Chipping Away at Lack of LE Education in the Medical Community

Now, if anyone's like me (ie, lazy about clicking on links!), here's just one interesting wee quote from it

...'Dr. Stanley Rockson at Stanford conducted a survey of U.S. medical schools just a couple of years ago and found that the average amount of time spent teaching the lymph system in a doctor's entire educational career is 15 minutes. That's an average, of course: some schools (he found) don't teach it at all. I mentioned that to a friend here who's a doctor and she told me that was not at all accurate for her own training. In fact, she said, at her school they spent a lot closer to 20 minutes on the lymph system -- nearly a third more time than the average!'

If anyone has any information/evidence that it's different this side of the pond, I'd love to get my hands on it!

I think that as far as patient awareness of lymphoedema goes, things are improving. Unfortunately that awareness doesn't seem to extend to the medical profession. It shouldn't be part of our brief as patients to have to educate and harangue those employed to care for us in order to get appropriate and timely treatment for a condition that they themselves have caused. And I do mean 'care'. So many of them just seem to 'treat' (and walk away when they've done their 'bit'), which is by no means the same, in my book.

Jan, you too are right when you say we have to put things in perspective - cancer is the bigger issue of course. But that is not a reason for 'healthcare professionals' to abdicate responsibility. It's not curable, we know that, but it is treatable and should be, asap, on simple humanitarian grounds, not to mention cost. Untreated lymphoedema does not improve and even with treatment can worsen with age.

The milder the lymphoedema, the cheaper it is to treat. It's such a no-brainer!!!

Sandra, you make a good point about the reality conflicting with the advice; getting help immediately is almost impossible. BCNs often seem to be detailed off by PCTs to obstruct access to lymphoedema services and GPs know so little about it that you're likely to end up being giving a prescription for diuretics which may make it worse. They don't seem to prescribe compression tops enough either, seems they'd rather get people spending their own money on specialist bras!

I think those lymphoedmea leaflets should also come with a wealth warning:

'THE LYMPHOEDEMA SERVICES IN YOUR AREA MAY WELL BE UNDER-FUNDED, OVERSTRETCHED OR NON-EXISTENT. START SAVING NOW; YOU MAY NEED TO PAY FOR TREATMENT. FOR EVER'.

OK, that's it, no-one deserves to read a rant this long....

X to all

Jill, so sorry you've ended up as a tick in someone's lymphoedema box. Disgraceful; take some feisty pills before your next appt, won't you!!! 😉

Rhian
Member

Re: breast lymphodema

Hi

They are dismissive because they don't understand the condition , everyone ( medical establishment) i seem to deal with won't speak /inform/ advise enough on what to do /not to do pre the condition, its almost a , 'we will deal with it when you get it'. But so much can be done to help the body ..arrghhh i get so frustrated with this ha ha

Bahons....you need to get working on that web site/facebook information site you truly are the 'lady who knows'

Rhian xx

sandra44
Member

Re: breast lymphodema

Hmm that makes sense Jill, refer you to a lymphodema clinic that isn't actually a lymphodema clinic ! What are these people on !
I don't understand why surgeons,oncs,bcns,gps etc are so dismissive of this incurable condition.
My bcn apart from the fact that she didn't think it was lymphodema was also one for saying "people" liked to leave it for a while........ WHY ? If it's lymphodema it's lymphodema,leaving it for any length of time is hardly beneficial. In fact all the lymphodema leaflets I was given clearly stated that this is something that should be followed up immediately.I feel like there is a mad conspiracy going on with this....

I have been doing the self massage twice daily and boob is still ok during the day but it fair gives me gyp at night,is very sore and goes all hard and lumpy,oh the joys.....hate to think what it would have been like if it had been left for 12 months !

Sandra x

lavendersblue
Member

Re: breast lymphodema

Great news Sandra...a good result , hope things improve soon for you.

Jan...I can't believe they said that to you ...old age !!! I am just behind you at 61....so perhaps I should watch out for this response too . Although when recommending Chemo..my Onc did say I was young and fit ...LOL Nearly asked where his dog and white stick where !!!!

Well , I went to my appointment at the Lympho clinic today...and met with a lovely sympathetic nurse who said that Bradford actually no longer runs a lympho clinic !!! She was a McMillan Nurse who had done some work in a lympho clinic....so she bobbed in when needed to see people ..and refer them on !!! She was lovely and supportive and said it was obvious that I had a problem and would refer me to a hospital in Otley that DID run a lympho clinic. So ...more waiting..but at least I think I can see light at the end of the tunnel !!!

My surgeon diagnosed Breast Lymphoedema , then walked out of the room , with no offer of help....my radiotherapy doctor said they liked to wait 12 months before they referred anyone , so I feel it is only my plugging away at it that has got me this far , my onc referred me in the end.....but I am still a long way from being sorted and now 5 months down the line from referral . Thanks to Bahons for all your help and encouragement about not being fobbed off .

Samsey welcome to this thread...as you can see just getting referred is not easy...but hope you can manage to get there.

Hugs, Jill

Bahons2
Member

Re: breast lymphodema

Hi samsey

It does sound as tho' you might be developing some breast/trunk lymphoedema.

I would suggest you try to get a referral to a lymphoedema nurse/clinic - the people best qualified to diagnose and treat it. Your bcn may (or may not) be able to help. If not try your GP/onc/surgeon.

You may have to be persistent, but if you've read some of the lymphoedema threads on here, you'll know that already!

X

S

samsey
Member

Re: breast lymphodema

hi all i am 3mths post rads my breast and underarm is very painful and tight i feel the skin is going to split especially at night i wake 4-5 times with the pain i am told this is nerve damage and feel i have to just put up with it, does anyone have the same prob i wonder about lymphoedema as well samsey x

Jan
Member

Re: breast lymphodema

Thanks Sandra

Actually I find my onc a bit spooky. He's got strange eyes!!!

Yes I second your thanks to Bahons. Superb advice always very sound.

This forum has helped me so much. So thanks everyone.

I don't know where I go from here really. I know I'm no spring chicken but didn't think that 'old age' quite applied to me yet. I'm 62 very active and pretty fit. Can still party with the best of them!!!

Well onwards and upwards.

Love 'old' Jan xxx

sandra44
Member

Re: breast lymphodema

Hi all, gosh your onc sounds nice Jan.....not ! Keep pushing for a referal to see lymphodema nurse/specialist. I knew in myself that something wasn't right and have been vindicated as I have now been diagnosed with lymphodema to the breast,trunk and arm ! Kerching ! Have a good mind to take my lovely sleeve when I get it to slap that stupid old codger of a gp who told me I had mastitis and that you don't get lymphodema of the breast !

Thanks to all the support and info from these forums esp you Bahons our lymphodema champion, but it just proves that there are so many so called medical people that just don't know what they are talking about and/or don't take it seriously. My bcn was happy to put me off not even see me and told me it would settle down, am lucky that it isn't that bad but it is there and if I hadn't been all bolshy and accepted what I was told Im sure my situation would be a lot worse. So I advise all of you....if it doesn't feel right and you are ticking the boxes re symptoms do not get put off but insist that you get a referal.

Have been shown how to self massage an getting a sleeve and from October if things havn't improved I will be in for 3xweek massage from the nurse,am just glad am in the system now and hopefully it can be managed. Good luck to you all.

Sandra x

Jan
Member

Re: breast lymphodema

Thanks Bahons2

Yes it was the onc. Right first time.

At the end of the appointment he said 'We'll see you in 6 months' I said I'd rather it was 12 and he said 'OK if you're happy with that'.
It just seems a waste of time and money going for checkups.

I think the surgeon did her job and is happy that she got a good result and a neat scar and the onc is happy that the treatment he prescribed has been successful in that the cancer hasn't come back. Anything else that happens isn't in their field.

There have been letters in the local paper complaining about lympho care in this area so clearly that service is lacking.

No point dwelling on it. There were 5 of us diagnosed with BC around the same time in the village where I live. We all had our ops within 6 weeks of each other. One has now got ovarian cancer. Kinda puts it into perspective!!!

I'll keep taking the painkillers.

Love and {{{ }}} to you all

Jan x x x

Bahons2
Member

Re: breast lymphodema

Hi!!!!!!!

As they say, Sandra, "Way to go!" Keep us posted, won't you?

Jan, who exactly said it was 'old age'? Onc, surgeon,cleaner, bcn, receptionist? (My money's on the onc btw, or maybe the surgeon .....;-)

Jan, I do feel for you. Are you prepared to 'name and shame' your hospital? They deserve it. Your problems have gone on for so long, and no-one, but no-one, ever seems to try to help you.

'Bout time we all ganged up on the blighters, irradiated their ******s (insert name of the body part of YOUR choice) and let them find out what it's like to live with all this collateral damage.

Thinking of you guys.

X

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Jan
Member

Re: breast lymphodema

Hi everyone.

Just got back from my check up at the hospital. I'd made up my mind that I was going to have my say today about my swollen, itchy, painful breast, white nipple and my painful arm so I did and was told it's old age!!!! The nurse looked aghast!!!

Well that's a new one. I've had all the other explanations, rads damage etc but 'old age'????

I just had to laugh or I would have cried.

Love to you all

Jan

sandra44
Member

Re: breast lymphodema

Well I wasn't going to accept the over the phone diagnosis of the bcn that my sore swollen boob,which only happens at night and goes rock hard, is just radiotherapy damage so got my referal to the lymphodema nurse who called today and I have got a cancellation appointment for tomorrow ....RESULT !

Will let you know how I get on... hope she doesn't just say it is radiotherapy damage ! lol.

Sandra x

Bahons2
Member

Re: breast lymphodema

Hi Jill

Now I AM utterly convinced that you go (or will be going) to my old lymphoedema clinic, or to one that is staffed by someone who trained there!

Anyhow, good to hear that this time the appt. has been moved in the right direction.

Hope all goes well and that you get lots of help.

X

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lavendersblue
Member

Re: breast lymphodema

Would you believe it the clinic rang this morning to alter my appointment yet again !! At least this time they have brought it forward to Monday 24th. We were supposed to be going to see my BIL and family on that day...but this is more important so have postponed the relatives...LOL.

Hugs, Jill