Truncal and Breast Lymphedema following 2 surgeries and radiotherapy

[Athinakay]

After two surgeries, chemotherapy and radiotherapy, I developed truncal and breast lymphedema ( hand and upper arm as well but they do not bother me as much, funny enough ). The problem with my breast is that following a large hematoma from the first surgery there is lots of fat necrosis that turned into radiation fibrosis/scar tissue after my rads. Now I have a really hard and painful breast and occasionally, my mondor's disease under my breast gives me recurrent cancer scares ( it feels like pain in the bone although it is just a lymphatic cord like AWS cording ). No professional seems to be able to help ( some mention liposuction, my first surgeon thinks the only way is a mastectomy ), has anyone tried the pentoxifylline-vitamin E combination to rid of radiation fibrosis?

I saw Dr Ramsey for LVA but he thinks that the breast needs to "sorted" of all this mess before anything can be done. I wear a compression vest by Bellisse, the only one I found not annoying me although I can go braless now that my breast is so hard ( but it gets more swollen if I do )! I also use Hivamat massage which helps a lot but, I have to have it at least 3 times a month. I am only 51 with two young kids, this is driving me insane ( constant pain ), I cannot imagine in our age and stage that nothing can be done... Forgot to say, there is also constant pain from my severed iintercostobrachial nerve, that is sort of "sorted" by lidocane patches.

[lovesradio]

Oh my goodness what a situation you have been left with. You don't say what your oriniginal surgeries were for but you have an awful lot of stuff to try to get sorted out. Very good luck with finding a consultant who can begin to address some of your biggest concerns.

[Athinakay in reply to lovesradio]

Many thanks for your message, I am always on the lookout for solutions! Best, Athina

[Rebec]

I am afraid that some of the treatments we receive leave behind problems. Have you had sone MLD done on your breast? This can be helpful. Have you tried using Kinesio Tape? Good luck with getting better which I'm sure you will; it's only a question of time.

[Rebec]

I am afraid that some of the treatments we receive leave behind problems. Have you had sone MLD done on your breast? This can be helpful. Have you tried using Kinesio Tape? Good luck with getting better which I'm sure you will; it's only a question of time.

[JMP123]

Hi Kay,

I had a WLE & Lymph Node removal followed by Radiotherapy for breast cancer & now have Lymphoedema in the right breast. It is described on the post surgery leaflet and long term side effects as rare, to have it in the trunk/breast region : I do not believe this to be the case.

I don't know where you live. I was seen by Professor Mortimer at the Royal Marsden in Sutton and then by a nurse at the Lymphoedema Clinic at the RMH in London. I hope that someone can provide some further ideas or solutions to this situation, I wish you well. Judith.

[Athinakay in reply to JMP123]

Hi, Judith, thank you for your response, I have seen both Prof Mortimer at Parkside and he diagnosed it as such as well as other consultants and therapists I met with ( I was worried that I will get lymphedema as I developed Mondor's disease and cording after surgery which is a indication of things to come so got my appointments early on ). It is not that rare if one goes by the what is said in the forums but, as with many cases of lymphedema it is not diagnosed but, brushed aside. I find the whole lymphedema issue completely upsetting as with all the new survivors and the many primary ones, there is so little done to help! My first surgeon ( the one who ignored my huge hematoma, that led to fat necrosis, although I was weeping black blood through my nipple during chemotherapy and asked for a scan which she downright ignored as well ) suggests I have a mastectomy ( two years after my surgeries )!!! Talking about a tough liner! She removed 29 lymph nodes although only one was involved, I should expect such an answer... My second surgeon ( I refused to use the first one again ), is completely oblivious to solutions ( that is surgeons to you ) and my radiology consultant said the radiation fibrosis is not his field! The only sympathetic ear is my oncologist, bless him, who is always up to trying whatever might help ( again, talking about rarity, the veins on the arm used for chemo are completely gone, two years down the line, took one of the onco nurses 1 hour to find a vein to take blood, it is only 1/1000, it had to be me )...

Again, I find it amazing that so little is known and done about lymphedema... Simply sad...

All the best to you, MLD works but has to be done on a regular basis and my insurance only covers 12 sessions a year ( as physio ). I am really considering buying a home Hivamat unit.

Athina x

[Rebec in reply to Athinakay]

How come a nurse tried to take blood from your lymphoedema arm? One is normally not allowed to have any blood pressured measured on the affected arm and neither any type of injections.

[Athinakay in reply to Rebec]

Not my lymphedema arm, the other one but that one is messed up as well due to chemo as I mentioned before. Re taking blood from the lymphedema arm I have heard people having it done, I would not...

[Rebec in reply to Athinakay]

About six weeks ago, I broke my right shoulder and at hospital, because they couldn't take blood from my left arm (because of lymphoedema and neither from my right arm because I couldn't straighten it, they used my right hand. It took quite a long time, but I was pleased that they were able to leave my poor arms alone. Is your hand badly affected as well?

[Athinakay in reply to Rebec]

Glad they managed to do it through your "good" arm and sorry to hear that you broke your shoLeft side lymphedema ( hand and upper arm swelling ), I have kept it under control as I checked it as soon as I got the cording post surgery and it only got badly swollen on two occasions. The upper arm is swollen and hardened and again, I try to have MLD and Hivamat massage as often as possible plus some self massage. The breast and trunk is more of an issue for me as there are days that the nerves act up so badly I want to take a knife and cut it all off myself! ( just kidding but, it is almost as bad ). I went to a pain specialist who prescribed Lyrica but, when I read the literature and side effects, it mentioned 7% swelling in healthy subjects, not lymphedema prone patients! I had to point it out to the consultant who thanked me but did not offer to pay me for my medical contribution! I use patches when I hurt, it helps a bit.

The right arm, lost most superficial veins because of my EC. The Taxol was

given through a port-a-cath a bit too late.

[Rebec in reply to Athinakay]

Have you tried Kinesio Tape and/or the compression machine that covers the trunk as well? You can get the machine for a two weeks trial for £75 (if I remember correctly).

[Athinakay in reply to Rebec]

Thank you for uour suggestions. I have tried kinesio, didn't do anything for me but not the compression macine, which one are you talking about?

[Rebec in reply to Athinakay]

It's the only one that I saw which covers an arm as well as half a trunk.one of our members here is a representative of the manufacturers. It's called Lympha Press. If you're interested, you can write to [e-mail]. I have their price list as well, but I think it's worth giving the machine a try if you have no heart problems at all.

Merry Christmas and a Happy New Year!

[Athinakay in reply to Rebec]

lympha-press.com/for-patien...

I love how she is on a Le Corbusier chaise! Itself costs a bunch!

[Athinakay in reply to Rebec]

Thank you, will have a look, Merry Christmas and a Happy New Year too!

[tomkitten in reply to Rebec]

A very interesting point!What to do when lymphoedema affects both arms and both legs as in case

[JMP123 in reply to Athinakay]

Hi Athina,

Thank you for your reply and thoughts. I feel the future will bring change with the growth in numbers of people with diagnosed Lymphoedema. I wish you well for 2015. Look after yourself. Best wishes Judith x