One potential fallout from breast cancer treatment is lymphedema. It does not happen to everyone, but it is a possibility when you have any lymph nodes removed or if they get damaged during treatment. There is no rhyme of reason why one person gets it and another does not. I only had 3 lymph nodes removed (and 7 weeks of radiation), but I got it.
Lymphedema is when you lymphatic system (important for immune & circulatory systems) does not work properly. Since lymph nodes were removed &/or damaged during treatment the lymphatic system gets blocked and prevents lymph fluid from properly draining. That causes swelling. The greater the blockage, the greater the swelling.
Unfortunately there is no cure for lymphedema. Since there is no cure, the best way to help prevent swelling is to manage lymphedema. There are many ways to do this, but only you will know what works for you. And some days are better than others!!!
Here are some of my tips and treatment experiences...
Of course in an emergency or if a doctor tells you that you need to do something then you should. However, always tell the doctor, nurse, or medical person that you have lymphedema. You can even get a medical ID tag/bracelet.
The OT will usually perform a manual lymph drainage massage (see below), as well as teach you how to do them. The OT's massage will be more than what you can do yourself - or at least I think so. The OT can use two hands coming from different angles to help encourage the lymphatic draining... my OT is amazing and trained for lymphedema massage.
Also, if needed, the OT can actually wrap the swollen limb. The bandages are special compression material and placed on very tight. The bandage is placed tightest around the fingers and slowly loosens as it works its way up the arm. The OT can show you how to properly wrap yourself too.
There are heavy-duty garments that can be used for more active swelling. These garments can also be used when exercising or when you are more likely to trigger swelling.
There are some less heavy-duty garments that can be used for every day wear. Compression garments are often worn long term, as to help prevent swelling even after you get it under control. And there are comfortable garments which is great since you are suppose to wear them as long as you are awake (and sometimes to sleep).
Ask the OT to properly measure you or go to a medical supply store to get properly measured. There are over the counter garments and custom-made compression garments. Let's be honest - they are not cheap. And you wear them almost all the time, so you need more than one (maybe more than one in all varieties). For me they have been worth it!!!
I have only tried these two companies for sleeves, but I looked at some other brands. When the medical supply store measured me they said that their company's standard size would not fit me. Do not go straight for a custom ordered (very expensive) sleeve - keep looking because most likely you will find some place that has a sleeve your size!
I was unwilling to pay for a medical compression shirt because it was crazy expensive. I found the Nike Pro shirt to work well for me and a lot less expensive. I bought a few sizes smaller than myself to add the compression element. Also the V-neck allows it to go almost unseen when I wear it... and it comes in a bunch of colors.
Some Symptoms of Lymphedema:
Try to recognize when these things happen. Once you do, then stop what you are doing and learn your triggers so that you can best avoid them or at least be prepared when you have to do them.
Also, keep in mind that sunburns can cause more trouble for your lymphatic system, so try to stay out of the sun as much as you can. If outside, always wear sunscreen, cover up your at risk areas, and try to avoid the hottest part of the day (11 am -3 pm).
This does not just apply to working out. Grocery shopping is challenging... I think need a robot to go for me. At least a robot that will putting items in the cart, out of the cart for check out, bags back into cart, then into car, then out of car, and finally into the pantry. All that lifting and carrying is problematic, so take it step by step, take breaks, &/or ask for help.
It is important to use your swollen arm, but just know your limitations, be safe (compression garments) when working out, and be careful when you are swollen.
If you are in some OT treatment and having trouble maintaining your housework then here is a good resource that may benefit you. It is an organization that helps female cancer fighters get free house cleaning services. If you apply and have a medical professional send them the proof, then they will set up 4 free house cleaning visits from a cleaning service. LOVE IT!!!!
Usually the recommended exercises will be walking, swimming, light aerobics, bike riding, and special designed ballet or yoga. Also, it is common to see information stating not to lift more than 15 lbs. Be cautious and ask your OT or Dr first!!!
Having the right bra is important. Do not wear under wire (or at least I have learned that is a huge no-no for me). Under wire is usually not good after radiation, as well as for my lymphedema since it cuts into my chest at the wrong locations and adds to the blockage of lymph fluid. Make sure to wear the right bra - one that is soft, comfortable, and supportive, On days that I have bad swelling issues, I just wear a sports bra.
Cross Body Purses
Purses are often bulky and can create strain on the affected arm. The over-the-shoulder strap or handbag is too much pressure for my arm. I had to change to a long over-the-shoulder carrying purse. Also, it has to be small so that it is light. A heavy purse that lands in your underarm pit area may trigger lymphedema, as well a backpack purse since the strap cuts under the arm. It should not be hard to find a stylish cross body purse that you like.
Jewelry
Jewelry can be restricting. Just be careful what you wear on your affected hand (rings, watches, bracelets, gloves, etc). Watch for swelling in the fingers... rings might get stuck.
Gloves
Gloves - wear them when you work on things... especially if you run the risk of injuring yourself. Take precautions when doing yard work and some housework. Also, don't let them get too tight.
Epson Salt Bath
A tip from a friend of my mom's who has lymphedema. She will take a luke warm bath with Epson salt in it to reduce swelling. If you use hot water make sure not to put the affected arm under the water for long (heat can cause swelling). A good excuse to hop in the tub and relax.
Clothing
Clothing is important. Wear things that are loose and comfortable. Keep it comfy, except for the compression garments the OT recommends.
Prostheses & Pads
If you opted to have a mastectomy, be careful with what prostheses and pads that you wear. Heavy prostheses may put extra pressure on the lymph nodes. Make sure that you are wearing the right bra as well because they can cause restriction or pressure in the wrong locations and cause swelling.
Another way to help decrease swelling is to elevate your arm (above your heart level). However do not leave your arm over your head for extended periods of time - that can be bad. So just raise it to decrease swelling
Lymphedema is when you lymphatic system (important for immune & circulatory systems) does not work properly. Since lymph nodes were removed &/or damaged during treatment the lymphatic system gets blocked and prevents lymph fluid from properly draining. That causes swelling. The greater the blockage, the greater the swelling.
Unfortunately there is no cure for lymphedema. Since there is no cure, the best way to help prevent swelling is to manage lymphedema. There are many ways to do this, but only you will know what works for you. And some days are better than others!!!
Here are some of my tips and treatment experiences...
The 3 No Nos
Never... never... never allow an the following to the affected arm(s):- Needles - no injection or a blood drawing
- IVs
- Blood Pressure
Of course in an emergency or if a doctor tells you that you need to do something then you should. However, always tell the doctor, nurse, or medical person that you have lymphedema. You can even get a medical ID tag/bracelet.
Occupational Therapy
An Occupational Therapist (OT) can really help. The OT will measure your swelling on a regular basis, help you determine what may be triggering your swelling, and create a Lymphedema Management Plan. Not only do they help you understand more about lymphedema, they provide massages and compression wraps and pneumatic compression as needed.The OT will usually perform a manual lymph drainage massage (see below), as well as teach you how to do them. The OT's massage will be more than what you can do yourself - or at least I think so. The OT can use two hands coming from different angles to help encourage the lymphatic draining... my OT is amazing and trained for lymphedema massage.
Also, if needed, the OT can actually wrap the swollen limb. The bandages are special compression material and placed on very tight. The bandage is placed tightest around the fingers and slowly loosens as it works its way up the arm. The OT can show you how to properly wrap yourself too.
Manual Lymph Drainage - Prevention Massages
Keeping the lymph fluid draining properly is important and one of the keys to managing lymphedema. The massage, manual lymph drainage, encourages the lymph fluid out of the area where it is blocked. The massage is gentle hand strokes that redirects the lymph fluid into healthy lymph nodes. The OT (trained for lymphedema issues) will show you the proper techniques. (Also, if you have skin infections, active cancers, or some other issues than the massage cannot be done - the OT or your Dr will let you know).Compression Garments
Compression garments are basically garments that compress. They can be gauntlets for the hand, sleeves for the arm, and shirts for the trunk. They help encourage the lymph fluid to flow out of the affected area.There are heavy-duty garments that can be used for more active swelling. These garments can also be used when exercising or when you are more likely to trigger swelling.
There are some less heavy-duty garments that can be used for every day wear. Compression garments are often worn long term, as to help prevent swelling even after you get it under control. And there are comfortable garments which is great since you are suppose to wear them as long as you are awake (and sometimes to sleep).
Ask the OT to properly measure you or go to a medical supply store to get properly measured. There are over the counter garments and custom-made compression garments. Let's be honest - they are not cheap. And you wear them almost all the time, so you need more than one (maybe more than one in all varieties). For me they have been worth it!!!
I have only tried these two companies for sleeves, but I looked at some other brands. When the medical supply store measured me they said that their company's standard size would not fit me. Do not go straight for a custom ordered (very expensive) sleeve - keep looking because most likely you will find some place that has a sleeve your size!
Great for fun every day wearing compression sleeves - Visit LympheDivas
Reasonably priced heavy duty compression sleeves - Visit Exo Strong
A more affordable alternative for a compression shirt - Visit Dick's Sporting Goods
Pneumatic Compression
Sometime the OT will help reduce swelling through pneumatic compression. It is a sleeve connected to a pump that intermittently inflates, putting pressure on your limb gently moving lymph fluid away from your fingers. It takes about one hour to use and helps reducing the swelling in your arm. The OT would recommend this for you or apply it during the treatment session. Also, the OT can make a referral for you to get a one for home so that you can help better manage lymphedema. The machine really helps and should be done as recommended. However, it is costly so try to get it at the end of the year when you have already met your insurance deductible.Understanding Your Symptoms
One of the best ways to help is to know your symptoms. You know when you are not feeling right - trust yourself. Essentially, when you feel the symptoms starting to happen in your arm or body, then you need to evaluate what you are doing and stop.Some Symptoms of Lymphedema:
- Swelling of part of your arm and or fingers.
- Feeling of heaviness or tightness in your arm.
- Restricted range of motion in your arm.
- Aching or discomfort in your arm.
- Hardening and thickening of the skin on your arm.
Try to recognize when these things happen. Once you do, then stop what you are doing and learn your triggers so that you can best avoid them or at least be prepared when you have to do them.
Learn Your Triggers
There are many triggers the cause swelling to happen. I am sure I forgot a few, but here are some that I have experienced or heard about from others...Weather (Heat, Humidity, & Sunburns)
This one is a dozy for me. Heat. Humidity. The sun... it can be brutal. The summer months are rough. I would walk outside and poof... swollen. I have found that both humidity and barometric pressure can cause me to swell. Basically, weather can trigger swelling.Also, keep in mind that sunburns can cause more trouble for your lymphatic system, so try to stay out of the sun as much as you can. If outside, always wear sunscreen, cover up your at risk areas, and try to avoid the hottest part of the day (11 am -3 pm).
Temperature Issues (Hot vs Cold)
Hot is bad. Heating pads, saunas, hot tubs, or hot baths can increase swelling. Be careful when washing dishes too. The extremes of cold or heat are associated with increased fluid build-up, swelling, and skin irritation. So, be aware that temperatures can affect your flair-ups.Don't Lift That
Avoid heavy lifting. Especially when you are told to by the OT. I have always been "strong" and restraining myself can be challenging. However, when I do forget I usually pay for it later.This does not just apply to working out. Grocery shopping is challenging... I think need a robot to go for me. At least a robot that will putting items in the cart, out of the cart for check out, bags back into cart, then into car, then out of car, and finally into the pantry. All that lifting and carrying is problematic, so take it step by step, take breaks, &/or ask for help.
It is important to use your swollen arm, but just know your limitations, be safe (compression garments) when working out, and be careful when you are swollen.
Don't Grab. Don't Twist.
I have found that reaching out to grab items (over a certain weight) in motion can be dangerous. Even things as simple as the trying to catch one of my children when falling has created swelling. My right arm has lymphedema and I am right handed... it's a pain! I will automatically react or reach to things with my right arm. It is instinctual and often leads to increased swelling to that arm. Opening jars, gas tanks, and in general any twisting item is challenging as well. The best option is to try and use the unaffected arm more.Hobbies (Blogging & Painting)
It sounds simple, but typing and painting will create lymphedema swelling.The holding of fingers/arm to type or paint, as well as repetitive action of the hands hurts after a while. These are things I am not willing to just give up. So whatever your hobby is that may strain your hand don't quit it. Find alternative ways to do it. Instead of typing or painting for extended periods, add more breaks. Sure, I miss the flow of creativity, but at least I can work in spurts!Repetitive Motions
Be careful when doing things that are repetitive. Anything that is vigorous or repetitive or with resistance can increase swelling. Housework can sometimes be a huge problem - well more than the normal pain in the butt to do. Things like vacuuming, scrubbing, lawn mower, brushing, any pushing/pulling motion, basically any cleaning can trigger swelling.If you are in some OT treatment and having trouble maintaining your housework then here is a good resource that may benefit you. It is an organization that helps female cancer fighters get free house cleaning services. If you apply and have a medical professional send them the proof, then they will set up 4 free house cleaning visits from a cleaning service. LOVE IT!!!!
Cleaning for a Reason - Apply Here
Safety 1st
It is important to avoid injury to the affected arm. Infections can be caused by cuts, burns, insect bites, bruising, etc. An infection can cause lymphedema to flare up. Do your best to take care of these things as soon as they happen. Also, not getting cuts via shaving (electric razor is recommended) and nail care are important. Try to remember to think before you do things that could cause a swelling reaction.Exercise (Know Your Limits)
It is important to be healthy, but talk with your OT about what you should and should not do before you begin. Never overtire your arm. Do light exercises. And don't lift too much. The OT can recommend some arm exercises that will help move the lymph fluid out.Usually the recommended exercises will be walking, swimming, light aerobics, bike riding, and special designed ballet or yoga. Also, it is common to see information stating not to lift more than 15 lbs. Be cautious and ask your OT or Dr first!!!
You Swell When You Eat
Some foods, especially foods high in salt and fat can cause an increase in swelling. Try to avoid salty foods - especially if you are prone to swelling normally from them. Also, drink water... drink water... drink water. I think for all aspects of cancer treatment I have said to stay hydrated. Drinking water seems to be a consistent helpful tip.More than Aesthetics
BrasHaving the right bra is important. Do not wear under wire (or at least I have learned that is a huge no-no for me). Under wire is usually not good after radiation, as well as for my lymphedema since it cuts into my chest at the wrong locations and adds to the blockage of lymph fluid. Make sure to wear the right bra - one that is soft, comfortable, and supportive, On days that I have bad swelling issues, I just wear a sports bra.
Cross Body Purses
Purses are often bulky and can create strain on the affected arm. The over-the-shoulder strap or handbag is too much pressure for my arm. I had to change to a long over-the-shoulder carrying purse. Also, it has to be small so that it is light. A heavy purse that lands in your underarm pit area may trigger lymphedema, as well a backpack purse since the strap cuts under the arm. It should not be hard to find a stylish cross body purse that you like.
Jewelry
Jewelry can be restricting. Just be careful what you wear on your affected hand (rings, watches, bracelets, gloves, etc). Watch for swelling in the fingers... rings might get stuck.
Gloves
Gloves - wear them when you work on things... especially if you run the risk of injuring yourself. Take precautions when doing yard work and some housework. Also, don't let them get too tight.
Epson Salt Bath
A tip from a friend of my mom's who has lymphedema. She will take a luke warm bath with Epson salt in it to reduce swelling. If you use hot water make sure not to put the affected arm under the water for long (heat can cause swelling). A good excuse to hop in the tub and relax.
Clothing
Clothing is important. Wear things that are loose and comfortable. Keep it comfy, except for the compression garments the OT recommends.
Prostheses & Pads
If you opted to have a mastectomy, be careful with what prostheses and pads that you wear. Heavy prostheses may put extra pressure on the lymph nodes. Make sure that you are wearing the right bra as well because they can cause restriction or pressure in the wrong locations and cause swelling.
Drink More Water
I do not have a tips page that does not reiterate the importance of water. I know I continually say it, but keep drinking water. I have to keep after myself, but it really does help in so many areas. Drinking water is helpful in reducing swelling... so keep drinking your water!!!
Rest & Ice & Elevate
When you have symptoms coming on... rest your arm(s). Sometimes adding an ice pack will help reduce swelling, but make sure you have no reactions to cold. I enjoy a good cold pack!Another way to help decrease swelling is to elevate your arm (above your heart level). However do not leave your arm over your head for extended periods of time - that can be bad. So just raise it to decrease swelling
Up Up & A-plane
If you are planning to travel by airplane - you need to wear a compression sleeve. The lower air pressure in the cabin can trigger or exacerbate lymphedema so you really need to wear compression everything. Make sure to check with your OT or doctor about traveling, to find out what precautions you should take. And do not forget to drink more water - the additional fluid will help with swelling.Lymphedema Treatment Act
Keep educating yourself and learn more about how to help change laws supporting lymphedema (medical coverage and costs associated with lymphedema).
To find out more - Click Here
As I learn more, I will share more too!
Excellent article, Amy!
ReplyDeleteAmy,Very helpful info. I have a Lymphadema pump that pumps my left arm and my upper left leg.It has been a God sent. I wear my sleeve almost everyday.I live in Az.and the summer heat is a concern to where at my age, 62 I may go to Northern Calif to where it is cooler during the Az.summers. I have been hospitalized twice from infection,extremely painful,and 2 types strong antibiotics for 5 days.To all that are going thru Lymphadema,be kind to yourself and be as careful as possible.
ReplyDeleteI need the pump to help with lymphadema issues in left arm plus in my left torso. I just cant get the pump. My insurence turn me down on the pump. :-( And I cant get my drs to send in any thing that would help in getting the pump. I have gone to PT and does not help. and I am finding it hard also to even try get any shirts that might help me. as i am on alow income budget.I just cant get any good help.
ReplyDeleteIs it okay to apply Icy Hot?
ReplyDelete