Benefit of axillary rads VS risk of LE in ALND patients?

lazylizzie

Hi all! I'm in desperate need for help. I am finishing my weekly taxol chemo and will be starting radiotherapy soon. RO gave me the option of doing either whole breast + supraclavicular (SC) rads (3 weeks) or whole breast + SC + axillary rads (5 weeks). She mentioned that the axillary rads will reduce recurrence by 4% but raises the chance of developing lymphedema by 25%. As a stage III patient with axillary lymph node dissection (ALND), I'm really afraid of recurrence but at the same time I'm scared of developing lymphedema too which I know can be permanent.....what should I do?

Does any of you have the treatment combi of axillary/sentinel node dissection with SC + axillary rads? Can I lessen the chance of developing lymphedema by wearing compression sleeves during radiation?

Any advice appreciated! Thank you very much!

linzer

I will be watching this closely. I am in same situation in that I had ALND and do not want lymphedema, but also do not want cancer to come back. I've not yet met with my RO. I'm still on AC chemo. Hugs as you make the decision.

lazylizzie

Hi linzer, hope you are doing fine with the chemo! How many sessions are you left with? Sigh, I really hate making decisions throughout this cancer journey...and this is the hardest one.

I'm only 26 this year. I hope I can live on for many more years, but again if I develop LE I will have to live with it for that many years. I really love travelling..with LE, will I still be able to travel often on plane??

I've just talked to my Chinese physician about this and he strongly suggests that I go ahead with the axillary rads as I'm a grade III, IDC. He told me he will prescribe herbs that will help with the lymphedema. I personally think it won't help a lot but I'm leaning more towards going for the axillary...

Hoping someone can shed light on what I can do before/during/after the radiotherapy treatments...thank you!

Binney4

Good morning, Lizzie and Linzer,

These decisions are so stressful, and I'm so sorry you're in the middle of them.

Here's the deal: lymphedema is sure no treat, but it's not the Beast. You have a better-than-average chance of avoiding it altogether even with the axillary rads, but even if you should develop it, be assured it's manageable. In the meantime, do whatever you can to increase your odds against the wretched bc, and let's see if we can help you with the lymphedema risk.

First of all, if at all possible do see a well-trained lymphedema therapist BEFORE rads begins. S/he will do baseline arm measurements for future reference, give you personalized risk reduction tips, and measure you for a compression sleeve and glove you can wear during rads and for travel, exercise or any strenuous activity. (Be sure to get either a glove or gauntlet as well as a sleeve, to prevent any swelling from moving into your hand.) Here's how to find one near you (the links at the Therapist Locator include countries other than the U.S.):

http://www.stepup-speakout.org/Finding_a_Qualified...

Some easy risk reduction tactics include: stay really well hydrated (it helps to dilute the lymph fluid and keep it moving) and stop throughout the day to do some deep abdominal breathing (stimulates the largest lymph vessel in our bodies). The lymphedema therapist should give you some gentle exercises to do as well that will help pump lymph fluid.

Here's more information on risk reduction:
http://www.stepup-speakout.org/riskreduction_for_l...

Lots more information on that site, so while you're there, look around!

Traveling is certainly possible with lymphedema (or the risk of lymphedema). Others here will no doubt be along to tell you more about their own travels.

We're sure here for you--please tell us how we can help.

Gentle hugs,
Binney

linzer

Thank you, Binney! What a thoughtful response. Thanks to previous advice on bc.org I saw an LE PT prior to lx and had the baseline done. I've been seeing her since Sept and almost back to normal ROM and mild cording almost resolved. So, do you recommend a sleeve no matter what during rads? If so, I will get on that with her right away. Again, thanks for reaching out! Linda

Binney4

Linda, the issue with using compression garments prophylactically is that they have to fit well, not constrict in one area like a blood pressure cuff. The compression on well-fitting garments is stronger farther from the axilla and less as it moves up the arm, so that fluid is encouraged to head in that direction and not stagnate lower down--that is called "gradient compression." Here's some information about fitting that will help you understand the lingo and know what to expect:

http://www.stepup-speakout.org/proper_fitting_of_l…

The feeling of more and more therapists and researchers now is that, yes, compression can be used prophylactically during rads with good results. Juzo now makes a low compression off-the-shelf sleeve (15-20mmHg), and if you currently have no lymphedema diagnosis, that would be a good choice, as lighter compression is all you need. Talk it over with your therapist and see what the two of you can work out together.

Please do keep us posted on your progress!

Hugs,
Binney

lazylizzie

Hi Binney - thanks for your insight on LE, totally helped and made me feel better in making my decision! I had no lymphedema weeks after surgery but I'm unsure whether I have LE now. I can feel my top getting tighter at the upper arm area and that area is tight/slight painful upon touch when I straighten my hand. I think the tightness developed after I done some strength training which I totally regret now. Will this kind of tightness go away after some time? I tried measuring my LE upper arm and its around 1/2 inch bigger in circumference and 1/4 inch bigger at the elbow area which doesn't really fulfill the criteria of LE? Would you consider that I have mild LE?

About the fitting of wearing the compression garment prophylactically, do you mean it is for those who have no LE at all or can it apply to those with mild LE as well? Does the fitting (ie tighter further from axilla and less as you move up) of prophylactic garment differ from those who already have LE? 

Hope you don't mind this LE newbie just throwing qns here . I promise I will be reading the website and posts on the forum just that the information looks too overwhelming for now heh I will also update the thread when my treatment starts, thank you!

Wishing everyone well,

Lizzie

 

Binney4

Hi, Lizzie,

Please don't apologize for asking question--much less for feeling overwhelmed! We all "get it" here. Let me see if I can answer your questions.

Lymphedema can be present in your arm before any swelling is noticeable or measurable. That's called "Stage 0" lymphedema, and some of the symptoms might include tingling, an achy feeling, or just that your arm feels "funny." When there's measurable swelling, though, that would be considered Stage 1. Time to see the lymphedema therapist and start getting some help with reducing the swelling and preventing progression. 

Early stage lymphedema can come and go, so you might experience some lessening of the swelling. But that doesn't mean the lymphedema is gone, so definitely time for the expert eyes of a well-trained therapist. So, yes, it's likely you have early stage LE.

Someone with LE already present may be better off with a slightly higher compression level (20-30mmHg). If the swelling is only in your upper arm you may need only a gauntlet (fingerless glove) rather than a full glove (all compression gloves do have open fingertips, though--thank goodness!) The gradient compression (higher toward the hand, lower toward the axilla) is a feature of all LE compression garments, whether just for risk reduction or for treatment. 

The treatment of LE involves a gentle "massage" technique called Manual Lymph Drainage (MLD) that moves the fluid out of the affected area. Since this involves the neck and chest as well, it will need to be put off until your skin has returned to normal after rads. But a therapist can still help you control both the swelling and any discomfort, and compression garments will be part of that control. Radiation itself often causes swelling in the radiated fields, but that will subside with time and healing, as long as the lymph drainage pathways are kept open and functional.

Please feel free to ask again if any of that is confusing. We're here for you,
Binney

LindaLou53

Hi LazyLizzie, Binney has given you excellent advice and links to great LE resources.  I can tell you that I faced something very similar to what you are going through, almost 9 years ago. I was diagnosed with my second primary breast cancer in 2005.  In addition to bilateral mastectomy without reconstruction, I also had a total axillary dissection with 23 nodes removed on the left side.  I actually developed LE during my second month of chemotherapy.  I had Hand/Foot syndrome from the Xeloda and Taxotere chemo and that was what pushed my lymphatic system beyond its capacity.

I went through the 6 months of chemo seeing a LE therapist a couple of times a month for MLD and wore a compression sleeve and gauntlet.  When it came time for my radiation I chose to do the full 3 field radiation, which included my left chest wall, full left axilla and my supraclavicular nodes.  I wore my compression sleeve and gauntlet every day including during radiation.  One thing I now wish I would have done was to continue seeing my LE therapist on a regular basis throughout my 7 weeks of radiation.  I believe this is a very important way to help provide continuing support to your lymphatic system during the period of extra inflammation caused by the chemo/radiation treatment combo.

As Binney has commented, the Cancer is the primary concern.  I have had lymphedema now for over 8 years, and yes it is manageable and life goes on in so many good and positive ways.  Lizzie, I do not regret the decisions made for my treatment options.  In my case my LE occurred before I started radiation, but I would still have made the same choice for the most effective cancer treatment even if the LE ended up occurring later.

Lizzie, I would suggest you consider doing the following in preparation for the start of your radiation.

• Find your self a well-trained and experienced LE therapist, who as Binney has already mentioned can do baseline measurements and assessment of your at risk arm.

• Be taught how to properly deep breathe, do LE exercises, self MLD and proper hydration and skin care.

• Get fitted for a compression sleeve and at least a gauntlet for the hand prior to the start of your radiation.

• I strongly suggest you discuss with your LE therapist the need for ongoing LE therapy throughout your radiation period and beyond.  The actual radiated portions of the body will not typically be treated by a LE therapist when actively receiving radiation, however, there is nothing preventing them from continuing to provide good modified MLD, deep breathing and supportive LE care to the remainder of your lymphatic system.  The goal is to keep your lymphatics in the best shape possible to increase the chances they will weather the temporary effects of chemo/radiation on your body.

• If at any time you notice you are having noticeable swelling or symptoms, you should inform your LE therapist and have her obtain more specific orders from your physician (either MO, RO or PMD) for increased therapy sessions.  If you have hand swelling, then you will need to switch to a full fingered glove instead of just a gauntlet.

http://www.cancer.net/navigating-cancer-care/side-effects/buildup-fluid-or-lymphedema

Lizzie, I don't say these things to frighten you, but to help arm and prepare you to handle whatever may develop during and following your treatment.  Most studies indicate that patients receiving radiation will continue to be impacted by inflammation side effects for a minimum of 3 months and often for as long as 6 months following the completion of treatment.  Studies in which women received LE education and baseline measurements prior to their surgery, and then were followed up at least every 3 months with measurements, symptom assessment and compression garments as needed, were found to have better outcomes and longterm success at controlling any LE that developed.

Because you are possibly already experiencing some swelling and tightness, it is even more important to get yourself established with a LE therapist now who can follow you throughout your remaining treatment and beyond.  I hope you stay in touch with us and let us know how things are going for you. You can do this!