Lymphodema to the breast

Hi

i have never heard of this spaghetti foam.

how do you wear if and where do you buy it from please?

Hi , the lympheodema nurse said that fully supportive bras would assist with lymph drainage I think, or maybe that the unsupportive post op ones were making the problem worse, can’t really remember. I guess the lack of support might let the lymph ‘pool’ more? It all arose after an oncology follow up, 10 weeks post rads, when I asked why the treated breast was bigger than the other. All I’d read had suggested that, if anything, the radiated breast would end up smaller. So they referred me to the lympheodema service. 

I went to M and S to be fitted. Out of a selection, the best fit was a soft but supportive T shirt bra, think it’s called ‘sumptuously soft’. No cup seams, no wires but good support and a good fit. I didn’t like that it’s all synthetic as I prefer cotton but they seem good so I’ve stuck with them for nearly 3 years now. Seams leave ‘pitting’ on the treated breast - my sports bra does this but I only wear it for exercise classes and Nordic walking, so not all day. Will have a look at the flexifit too, nice to have some variation! 

I agree re photos, I used to search the internet for images that might look like mine! Not really very helpful as there are some horror stories out there, best left out. But some photos of examples within a ‘normal’ reaction range would have been really useful. I had a weird pattern on the skin which were like little scales and they gradually fell off, plus my nipple went pretty much black and was so painful. The breast clinic were lovely and reassuring, the doctor said ‘it really didn’t like the radiotherapy, did it?’!! But said it’s impossible to predict who’ll have a reaction and many don’t at all. Main thing was, I was assured it was ‘normal’ and not alarming. 

Hope the redness will resolve soon, keep going back until you’re sure all is well. It’s great that they’re monitoring it and I’m glad the pen marks were fine!! 
HFxx

Hi , the foam was mentioned to me at the breast clinic so I think you should be able to self refer back to the clinic and ask there? In the end it was judged that I didn’t need it, as the lympheodema had decreased due to the better bras and the Nordic walking. I’d be inclined to get it ‘fitted’ rather than buy off the internet as you may need guidance and the right size? But someone here may have better experience and knowledge and advise differently. It’s all such a minefield…. Love and hugs, HFxx

Hi Happy feet, results from PETscan show activity in new lump. In for biopsy Monday, swollen Lymphenode near lung & major artery, trying not to think about that, glad IV been able to get in so quickly. Isolating now. I'm very lucky so far compared to some, thanks for all the positive comments & advice, live to you all xxx

Hi Bailey lady, IV been given spaghetti foam by Lymphedema nurse at first appmt. She said it helps to gently move Lymphe under the skin whilst wearing during the day, it sits next to the skin & very comfy, luckily been wearing it during winter months so easier to cover up under jumpers etc. You can also get pads to put in your support bra, best to ring the Lymphedema nurse for advice. She posted more foam out to me too, so very helpful. Doing your own LDM at home also helps. Good luck & lots of hugs xxx

Hi , well done for getting it seem to quickly. Sorry you’ve got more worries but definitely good that you got in there and that they’re responding quickly. Once the biopsy’s done and results back, you’ll know what you’re dealing with. And we’ll all be with you, holding your hand. Love and hugs, HFxx

Hi HappyFeet,

Thanks for the bra info, I went online to look for them but sadly they only go up to an E in the non wired! It makes sense about the fluid pooling esepcially with lack of lymph nodes. Yes I thought that too, about the breast being smaller after treatment, I suppose thats partly due to the lump thats been removed as well as radiotherapy.

I spoke to the nurse at the radiotherapy department yesterday , she kindly rang to get an update and was very pleased to hear I'd been seen by a friendly and helpful surgeon. She was also most interested in the advise the surgeon gave me about wearing a bra to help the healing, as she said they had been telling patients to go braless if they were at home. She is going to email the surgeon, as she wants to be " singing from the same hymn sheet", which I was most impressed by.

I also suggested my wish to have seen pictures of possible radiotheraoy after effects, as you say within the normal range, so that I could have known what to expect and she said she has a presentation she does for the radiographers that she is going to let me have a look at. So who knows, perhaps my going through this will have changed some of the advise for women coming after me, which is really nice to think.

I have an appointment with her on Wednesday, as she is more than happy to just keep an eye on how it is healing, however it's already improved a little, just from a couple of days of wearing a bra!

Hope you are having a restful weekend. X

The best of luck to you Tess1965. X

Hey lovelies,, thanks for support. It's all moving very fast, which is great, im very lucky to get in for biopsy. Had a good cry, no longer angry, waste of energy & negative. This is the journey I have to take, I know I have you all for support & advice, bless you all xxxxxx

Many thanks for your advice HappyFeet and Tess1965.

I spoke to my GP on Wednesday evening and asked if I could be referred to a lymphodema nurse. The GP just said to use a hot water bag and massage my breast. She said try that for a while and see how I go on. If it gets no better ask again!  
useless! I don’t know how to massage it properly and I haven’t got a clue what sort of hot bag.

I also asked about itchy wrist and if there was a cream they could prescribe. Take anti histamine and rub in aveeno regularly.  Asked if it could be a side effect of lymphodema or anastrozole.  Doesn’t know and ask my oncologist who will know more about these things.

useless!!  I will ask my surgeon in March as I have got a follow up appointment with her.

thanks for your help though. Much more use than my GP!