Lymph edema!!

[MMMP]

Just added another complication with breast cancer to my list!!! Started having arm heaviness and tingling! I was convinced I had a pinched nerve when my fingers and hand started to burn and swell! No it’s Lymph Edema!! Something you read about but never expected to get!!! Now wearing a sleeve and a glove!!! It’s the most painful thing I’ve ever experienced!! Started on gabapentin and Vicodin!! Hope I caught it early!!! No cure- doing exercises and massage! Does anyone have any other ideas???

[Staysha]

I’m worried about getting that. Curious on how long after your mastectomy did it start? Do you know what may have triggered it? I read an article from the Mayo Clinic of a dr there that can reroute the veins or whatever transports the fluid. It says it’s a tedious surgery that takes around 5 hours but you could look into it. Try googling it.

Hoping it gets better for you.

❤️,

Stacy

[MMMP in reply to Staysha]

It’s been 5 years since my surgery- however it started because my nodes in my neck started to grow- the cancer has spread and is growing in my neck which is messing with the nodes that go to my arm. Had 20 nodes removed with my double mastectomy. Thanks for the information on the surgery-

[13plus in reply to MMMP]

MMMP I’m so sorry to hear you are going through this. I’ve met quite a few women who also developed it. I heard about the surgery, not met anyone who has had it though. You would only go for that as a last resort to maintenance I think. Pretty complicated surgery and not sure it works for all. I believe they also have to take them from somewhere else in your body but you would need to ask a doctor vs what someone told me!

[Julie2233 in reply to 13plus]

I've had the LVA procedure and for me it was succesful. The operation was done under local anaesthetic, took 4 hrs but I've had far worse dental treatment. I followed the consultants instructions to the letter and I am now as cured of lymphoedema as it's possible to be.

[13plus in reply to Julie2233]

Wow that’s fantastic! And just under local anesthesia makes it even better. So great to hear!

[Staysha in reply to Julie2233]

Hey Julie,

Just curious where did you have the LVA procedure? I’m so glad it worked for you.

Stacy

[Julie2233 in reply to Staysha]

I had my op done by the Oxford lymphoedema clinic.

[RLN-overcomer in reply to Staysha]

Yesssss I heard about this amazing surgery over a year ago, but I don't think it is covered by the majority of health insurances . I remember when the information on the research trials that all went well. I wonder how much it would cost out of pocket??? There must be other hospitals that need to also have trials, especially for those with extreme cases.

[Newtkim1]

I too struggle with lymph edema. The lymph would “pool” up on the inside of my elbow and eventually I would end up with cellulitis and in the hospital. This was so disheartening! I would lose valuable time from treatments and life! Finally I found a physical therapist who taught me how to do my own lymph drainage. No more cellulitis! It is a very easy to do self maintenance. Please ask your doctor to find you a therapist who can help you out!!

[syl70]

Sorry to hear about your Lymphedema. I’ve been on Taxol since July 2019. In Nov, I woke up to lymphedema in both legs. Within a few days, my legs swelled so much they they looked like tree trunks. They were hard and heavy. Very painful. Finally my doc referred me to an OT who does lymph drainage & I started wearing compression hose. It got a bit better, but would swell in the evening again. The OT referred me to a pump in both legs. The therapy is “drain & maintain” which means that I use the pump and then immediately after put compression garments for the rest of the day. Although the swelling in through the whole leg, most swelling is in my upper thigh, so I were compression bike shorts to bed. I’m also taking diuretics once a day. So far, it has gotten a lot better. I’ll probably have to wear some time of compression & do drainage for life. The good news is that the treatment is working. Good luck on your Lymphedema. It is a pain, but it can be managed with the correct treatment.

[CincinnatiExperience]

First check out Lymphedivas for terrific looking sleeves. I always find something on their sale racks.

After several mild episodes, I have been getting lymphedema massages every two weeks for the last few years. It's a small price to pay for peace of mind. Make sure you find someone certified in lymphedema massage therapy. IT IS NOT REGULAR MASSAGE. Regular massage can do more harm than good. There are several certification programs in various techniques. Most of them come from Europe. I am not endorsing any of them, but here are several to explore.

acols.com/

nortonschool.com/

klosetraining.com/

Be very watchful for infection. All of that build up of protein-rich lymph can very easily lead to infections. I have been on antibiotics more than once to combat it.

Anne

[MMMP in reply to CincinnatiExperience]

Thanks for your feedback it is so awesome to get information from others who have been there!!

[Rbeth]

I went to a physical therapist and she massages my lymph nodes. I also go to acupuncture for the pain in my nerve endings in my intestinal area. I don’t know if this can help. Worth a try.

Best wishes. Reenie

[MMMP in reply to Rbeth]

Yes thanks- a few others have suggested acupuncture as well- something to look into-

[Hidden]

Oh dear. I’m just not familiar with any of this. However, I have suddenly started having pain under arm/breast on one side. It’s not the side where I had my original breast Cancer. I now have Stage4 secondary breast cancer in my bones and lungs but that’s being treated with Letrozole, Denosumab and Ibrance. I’m wondering if that could be causing the discomfort. It’s all a mystery. I hope you can find a medicine that suits you. Best wishes

[MMMP in reply to Hidden]

Have your doctor check it out at next appointment!

[Hidden in reply to MMMP]

Thank you. I will do x

[Buffwright in reply to Hidden]

I do t want to be alarming... My MBC started with a mass in the breast tissue under my arm on the side of my mastectomy. My doctor wasn’t concerned about my complaints of tingling in my fingers (caused by the lurking mass) until a masseuse worked on a knot on my arm that triggered lymphedema. My original lymph dissection was in 1994! Anyway, my lymphedema hasn’t progressed since the latest surgery and MBC diagnosis—so I no longer wear a sleeve daily (just for travel), which was very uncomfortable. My arm is uncomfortable enough without it. Anyway, the bottom line is to pay attention to new pains!

[Hidden in reply to Buffwright]

Thank you. I will mention it to my Oncologist.

[13plus]

MMMP as Anne stated above it is really important you find yourself a certified lymphedema specialist. Like who got you the sleeve and glove? It’s really important it is fitted properly and tended to asap.

Lymphedema has stages like cancer. The more swelling occurs the higher the stage. You want to keep it under control to prevent developing the next stage. Avoid shaving, your armpit or anything that risks getting your skin cut, including your cuticles. The specialist should be teaching you how to self massage. Seeing as yours is caused by a growing tumor I would also ask them if they can communicate with your oncologist about the tumor. Does the oncologist have plans for dealing with that?

Other things to avoid with your arm. Don’t hold bags in that hand /shoulder, don’t hold things over your arm either , like a coat, etc. Holding your arm in one stationary position will aggravate the lymph.

Movement is good. Again advice from specialist needed here for best exercise and the order of them but generally they start small with the fingers, and then wrist, and then elbow, and then from the shoulder whole arm movement .

Wishing you well.

Here’s a great resource for info and help finding someone . Or call them if they don’t have someone listed in your area and they will help you. I will post the website in the comment below.

[MMMP in reply to 13plus]

My oncologist is hoping the chemotherapy will help to shrink the nodes in my neck- he said he has not had a lot of people with this issue. Thanks for sharing your advice!

[13plus]

Lymphnet.org

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[Julie2233]

Hi, I was diagnosed with lymphoedema whilst being treated for primary bc 4 years ago. It's a horrible shock especially when everything you are told is so negative.

My advice is to find a specialist lymphoedema practitioner who will perform lymph drainage massage on your arm which will reduce the swelling and sensation of heaviness. The therapist should also show you some simple exercises. The lymphatic system does not have a pump system like the veinous system but relies on muscle movement to move the fluid. You should also be shown simple lymph self massage, which is actually quite relaxing and will move the lymph fluid. You need to be measured for made to measure compression garments which need to be worn durning the day. Made to measure are a lot more comfortable and effective than off the shelf compression. If you are in the U.K. The NHS will provide these, I think I was allowed 2 sets a year.

There is no cure but there are a couple of operations available which can help. I had the LVA procedure which is only available at a couple of centres in the U.K. and at the moment isn't provided by the NHS and is not funded by health insurers as it's still considered to be cosmetic surgery. I think the situation in the US is different. The lymph system is plumbed into the veinous system so the fluid which is blocked has a different drainage route. It's best done early on before the damage to the lymph system becomes permanent.

I had the operation in July 2017 and stopped wearing compression in January 2018. I have a little swelling in the back of my hand occasionally which I can get rid of by self lymph massage. I have no pain anymore either.

The operation was done under local anaesthetic and took 4 hours. I've had far worse dental treatment.

There is no guarantee that it will work but it did for me.

I hope this information is helpful.

[MMMP in reply to Julie2233]

Wow! Thanks for all the great ideas. I hope I have caught this early enough to keep up my active lifestyle!!!

[Julie2233 in reply to MMMP]

I've been told many times by lymphoedema nurses to avoid vigorous exercise and heat. The leaflet I was given when I was diagnosed said not to garden, washup or polish using the affected arm. And to avoid saunas and over exercising! I didn't mind avoiding housework but I wasn't prepared to give up my spa weekends or the activities I enjoy.

The consultant and therapist told me that this information is outdated. I was told that I could do whatever I wanted but if it caused swelling to ensure I rested the limb and performed self massage and treat any cuts or grazes immediately to prevent infection. In other words just be sensible and listen to my body.

There is one book I found particularly useful by Peter Mortimer, Lets Talk Lymphoedema. It has lots of sensible useful information.

[MMMP in reply to Julie2233]

I hate polishing anyway! Cute- thanks for the reference- the more I know the better. I’m glad it’s my left arm - I’m right handed!

[Beaches42]

I developed lymphadema shortly after my mastectomy. I only have slight arm swelling but get severe pain in my armpit, ribs and back (known as truncal lymphadema). I’ve tried just about everything. When it flares up I see a physical therapist that specializes in lymphadema for massage therapy. Even though I don’t have too much arm swelling I wear a sleeve daily. It really helps keep all the lymph fluid flowing. I’ve even found cute ones online with designs and fake tattoos. I also have a lymphadema pump which basically replicates what a massage therapist would do. It is very helpful but you are supposed to do it daily and it takes an hour so they recommend it when watching tv before bed. Lastly, a plastic surgeon at MD Anderson said I was a candidate for lymph node transplant. They take lymph nodes from your groin and put them in your armpit. At this time I have decided to deal with the daily pain because at least I am doing ok. I’ve had several surgeries and hospitalizations so I really don’t want another one unless it is absolutely necessary. If anyone has done it I’d love to hear how it was. Hope this helps.

[MMMP in reply to Beaches42]

Thanks- great advice and I’m going to look for some cute ones!!

[13plus in reply to Beaches42]

See julie2233 above - she said she had it done with success!