Pre surgery measurements

NYmom, I had 'only' SNB, and well...here I am in the LE forum!! You are smart to do your homework. Here is an excerpt from a document I put together for a good friend who asked the same question. I researched in these threads, and in PubMed and through tons of patient booklets, and then I wrote up all that I wish I had known before I agreed to my SNB, which was probably discretionary. If you need more, PM me and I'll send the whole document to you, including references for the studies mentioned.

What Can I Do to Lower My Lymphedema Risk During and Just after my Breast Cancer Treatment?

There are steps you can take to lower your risk. You can also take steps to facilitate a very early diagnosis, should you develop lymphedema despite taking precautions.

Take immediate post-surgical precautions--If you are to have any lymph nodes removed (including sentinel node biopsy, which can include four or more nodes) take the following post-surgical precautions:

1. Do not allow blood draws, IVs, or blood pressure measures to be taken on your affected arm, even if the hospital staff and/or your surgeon tells you that your lymphedema risk is so low as to not warrant any arm precautions. If you have nodes removed from both arms, insist that this work be done using some portion of a leg.

2. Do not perform any exercises, including range-of-motion or ‘wall walking' stretches that require you to lift your arms above shoulder level, for two weeks following surgery. There may be a small window of opportunity for damaged lymphatics to regenerate, and stressing the axilla by performing traditional post-mastectomy exercises is suspected to interfere with that opportunity. 

Surgeons generally order range-of-motion exercises to commence within a day or so of mastectomy, to help prevent a painful condition called frozen shoulder. The condition is real, but several studies have shown reduced BCRL incidence if these exercises are delayed. A 2008 study compared the incidence of BCRL in women who performed immediate above-shoulder exercise with those who delayed these exercises for 7 days. The women who performed immediate exercises had nearly three times the incidence of BCRL within the first postoperative year, compared to those who waited the week. And yet at the end of that year, there were no statistically significant differences in shoulder movement, grip strength or self-evaluated outcomes between the two groups.

No study seems to suggest avoiding above-shoulder movement after radiation therapy, but scarring from radiation blocks the lymphatics, so common sense suggests that giving the area time to heal before stressing it may lower BCRL risk.

3. Do perform exercises designed to reduce post-surgical swelling. Get your surgeon's permission, of course, but the following exercises (based on those suggested by American Cancer Society, and modified slightly in a post here that Kira wrote) are helpful during the first 10-14 days after surgery (just do not raise arms above shoulder level):

a. Lie down and raise your affected arm above the level of your heart (you can bend your elbows--no reaching for recovery yet...) for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.

b. Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.

c. Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.

4. Avoid sleeping on your affected arm and do not lie on that side.

5. Stay hydrated: drinking water thins the lymph (fluid), making it easier to move through the body.

Take steps to facilitate an early BCRL diagnosis

An early diagnosis is an important risk-reduction strategy, in the sense that the earlier lymphedema is diagnosed, the more readily and easily it is treated. There is little evidence to suggest that lymphedema can be cured once it develops, but minor swelling is easier to control than is significant swelling; and controlling swelling in turn reduces the risk of disfigurement such as fibrosis, and dangerous complications, such as cellulitis. Steps you can take include:

1. Before your surgery or radiation treatment starts, request a referral to a certified lymphedema therapist or another individual who is qualified to take arm measurements designed to assess lymphedema. This individual must know and routinely use lymphedema arm-measurement methods. Request baseline measures of both of your arms-before starting breast cancer treatment.

Having baseline arm measures removes a good amount of conjecture if you notice swelling in the weeks or months following treatment. For example, if you are right-handed, your right arm may naturally have more volume than your left arm. If you have nodes removed from your right axilla, in the absence of any baseline measure, a lymphedema therapist will measure both arms and calculate the volume difference between the two. Your right arm may be larger than your left because of early
lymphedema-or was it always larger, because your right arm is your dominant arm? Taking pre-treatment baseline arm measures removes that uncertainty.

You will likely find that pre-treatment baseline measures are not covered by your health insurance policy. If that is the case, check your area for treatment centers or clinics that offer free lymphedema screening or baseline measures, and if not available, call around to see if you can negotiate a reduced rate for a measurement-only visit.

2. Know the signs of lymphedema that you can feel, but not see. Women with BCRL will often notice a feeling of heaviness, tingling, a pins-and-needles sensation, or sometimes a feeling of warmth in an affected arm, long before swelling is visually evident. Fluid volume in an arm can increase some 30% before added volume is even measurable, and yet that is just the time when lymphedema treatment, including manual lymph drainage and compression therapy, can be most effective in holding BCRL at its most mild and controllable stage.

3. Be your own strongest advocate and insist on evaluation by a qualified lymphedema therapist if you suspect you have lymphedema. Women with BCRL report anecdotally that their oncologists, radiologists and surgeons are not always quick to distinguish post-surgical symptoms from early lymphedema, so you may need to press the issue. An experienced lymphedema therapist can often identify early lymphedema through very subtle symptoms that your cancer treatment team is not accustomed to working with.

For help finding a qualified lymphedema therapist, visit www.step-up-speakout.org ;click on Finding a Qualified Lymphedema Therapist. For help making your doctors understand what you need, you will also find a downloadable document called What we Want our Healthcare Providers to Know about Lymphedema and a companion page called Essential Lymphedema Information for All Health Care Providers, both written by a physician who has BCRL. This information will give you ammunition to be a very effective advocate for taking steps to prevent, and if necessary manage, lymphedema at its most treatable stage. At SU-SO, you will also discover tons of help in recognizing the visible signs of LE, and help understanding how LE is treated, how to know if compression garments fit properly, and lots more.

Good luck to you!! And tell us what else you learn, as you continue to prepare yourself.

(for some reason I cannot get the page to insert the suso link...but I'm sure you can find the site!)

Carol

NYmom, Cinnamon is right that you need measures taken by a qualified LE therapist.  One thought is to start working the phones with every lymphedema therapy provider in your area and ask if they provide free screening, or would do baseline measures just as a courtesy.  I think you'll find someone who will do that.  Better a certified LE therapist than a massage therapist (although some LMTs are indeed well trained in LE--perhaps the one your surgeon recommended?).

NYmom, your surgery is coming up soon, so I wish you all the best as you prepare for next Thursday.  I am truly happy that you are so on top of planning, that you gave thought and action to managing your LE risks and got those baseline measures.  Lots of us around here wish we had been so proactive. 

You're probably getting some great support from the women over in one of the surgery forums, but know as well that we're thinking of you here--and fervently wish that you never need to drop into an LE thread, except to say hi and let us know that your surgery went well and you are recovering nicely!  Many of us have been there and know that you'll find the whole affair is easier than what we imagine before hand. 

Take care, and have a strong week!

Carol