Have trouble getting your Doctors to understand your Lymphedema?

I hear you loud and clear and to add that my MD laughed at me when I said I was scared I would contract LE. STUPID IGNORANT DOCTORS.  Yes do push for what is necessary. Very few MDs, surgeons etc see the seriousness of LE or even know what it is unless you look like the elephant man so swollen. Mine said I would NEVER get it. 

Jan, If your lymph PT says you have it and you have pain, swelling or fullness or tingling then you have LE.  It could be a early stage and can be controlled or even sometimes reversed with garments and care.Once you go forward there usually is no turning back though so do take care, it usually progresses.  

Great that you do the exercises.  Special trained therapists know way more than docs as that is there job. At least your BS is a bit more wary. 

If you have swelling under arms towards your back of your pit then that is trunkal LE and responses well to a Underamour  brand compression tee in Mens only, usually a size tighter than your normal size. It helps my pain go away.I am mild stage. 

Good that your coming here to get educated and Meggy we need your experiences and help to. You old pro.

I VALIDATE BOTH OF YOU! Hope you both feel better.

Meggy, Hugz, VA B,  This seems to be a common story.  And I don't like it.

When I asked my breast surgeon if my PT or my MO was correct.  Her point is that PTs are schooled in LE and that is their sole focus.  MOs are schooled to treat cancer.  She figured they are both right...  Well, that doesn't help!

Hugz, I know you are right about my symptoms.  I need to get serious again and wear those awful garments.  My current excuse is that it is so hot (like 100+), plus I need help getting the compression T shirt on and off.  Pretty sad excuses, I know.

Someone needs to wake up our MOs, at least in time for our daughters and granddaughters.

Meggy thanks for starting this thread.  Jan

I've had a difficult time getting any of my doctors to take the lymphedema seriously. My PS knows and has seen it at its worse--he acknowledges it, at least. The breast surgeon just can't believe I have it with only 3 removed on the right and 4 on the left. He's also seen it at its worst. Family doctor and oncologist seem to ignore it. 

I just had a horrible bout of cellulitus, too. The infectious disease doctor told me anyone could get cellulitus. I know they can, but mine stemmed directly from the lymphedema. It is frustrating.

Meggy, here is a good place to start.  http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm 

Back in March, when my symptoms started, I was planning to have my "dog-ears" removed by PS.  So when this happened, I call his nurse and told her about it. She assured me that I could still have the surgery, but I wanted to get checked out first.  She said that I was not "technically" PS's patient yet, cuz he had not operated on me yet,, that I "belonged" to the BS, so I needed to see him. (thought that was crazy)  So I went to see BS and he and his P.A. both said I didn't have LE. (after all, I only had 6 nodes removed.) I saw my med. onc 10 days later, and expressed my concerns. His P.A. measured my arm and said that I have a mild case.So I got a RX for PT. Believe me, the PT and you ladies here have been MOST helpful in this icky journey!! I see my PCP in August and it will be interesting to get her take on it. At least when I saw her in Feb, right before this started, she did check my arm for swelling, so I think she's a believer,,,,,,

And while arm LE may be more obvious,,, cuz you can measure one arm versus the other,, having truncal is definitely "weird"!! 

I just want to say that if I showed any doc my near normal size LE arm he would never believe that I have it. Also, I talked to a women with bilateral sleeves and her arms were the size of an eight year old boy. Honestly they were super skinney.  She was an LE advocate and had LE for years. I bet she has a hard time convincing her caregivers that she has LE also. It is only that her husband does MLD fully on her on a regular basis(they make it part of their foreplay to sex, cool hey!)  and that she is vigilant with her care and maybe a bit of luck that she is doing so well for so many years. It does show us that self care is important no matter what size or stage we are at.....Now if I can find a man to give me full MLD nightly I might be a happier person. Please send my way, I don't care if he is poor, rich, ugly, cute, or brainless..... just do it to me!!!   

Binney is right. we have to educate. I just went to an new MD last Wed.  and said I have LE and she said," Is that why you are wearing a glove"? At least she listened as I explained that my LE affected my whole quarter body and gave her the" chicken being quartered" example. It was only because Binney explains it this way that I was able to get my point across. Amazingly she said that the cardiologist next door might know something about LE. Now that got me thinking,  I just might print off the brochure mentioned on the threads and give both a copy.

Glennie.Ha... that made me laugh and that is why I visit the boards. We get it and still can find a joke about the whole dang thing.

Interesting and valuable thread!

Re Primary Care Physicians (PCPs): In addition to your trained therapist you need a primary care physician who
treats your other medical problems and has a basic understanding of the
pathophysiology of lymphedema. Lymphedema is being found to be
intimately related to different body functions and systems, and your physician
must make sure that your lymphedema treatment is coordinated with treatment for
any other co-conditions you may have. Lymphedema is related to your heart and
circulatory system, your immune system, your nervous system and your endocrine
system and is not, as previously depicted, just a "plumbing problem"
involving clogged or missing lymphatics. Since American-trained physicians are
not trained in lymphology, you must find a physician who has picked up
knowledge of the lymphatic system and its problems either through extra
training courses or through experience with prior patients. Often it is the patient
who must bring medical articles on lymphedema to their physicians.

Re Importance of Early Care: You must be insistent on receiving early care of your lymphedema. In some recent small studies it has been indicated that lymphedema might be preventable with early intervention. The following is an abstract from my correspondence published in the Journal of the American College of Surgeons July 2013:

"Current medical and economic studies support early detection and prevention of
disease as a cost-effective means of avoiding progression to harder-to- treat
stages. The “prospective surveillance model” is a proposed lymphedema care
delivery system that would define early-stage breast cancer-related lymphedema
when swelling reached 3% during the first year after breast cancer treatment.
Lymphedema detected with this criterion would be treated with an inexpensive
20- to 30-mmHg compression sleeve for 1-month periods [Stout Gergich NL, Pfalzer LA, McGarvey C, et al. Preoperative
assessment enables the early diagnosis and successful treatment of lymphedema. Cancer.
2008;112:2809-2819] Maintaining
the lymphedema at a sub-clinical stage during the first year will prevent or
retard the destructive tissue changes in a swollen lymphedema limb that define
the progression of lymphedema.

Another
lymphedema care delivery model based on lymphedema early detection and
intervention would provide manual lymph drainage (MLD) to the limb of a breast
cancer patient from the second day after treatment and throughout the first
year. The 6-month study included trial groups undergoing sentinel lymph node
biopsy (SLNB) and axillary lymph node dissection (ALND), with and without
radiotherapy. The investigators measured percent excess arm fluid and provided
intervention to all members of the intervention group. Although average excess
fluid due to lymphedema in the women in the control group, who received no MLD,
grew monotonically from zero to +10% at
6 months, the average excess fluid dropped monotonically in the MLD group from
+1% to -1.5% [Zimmermann A, Wozniewski M, Szklarska A, et al. Efficacy of manual
lymphatic drainage in preventing secondary lymphedema after breast cancer
surgery. Lymphology. 2012;45: 103-112]

The
onset of lymphedema after surgical breast cancer treatment may not occur until
7 months (range 1 to 37 months). After a combination of surgery and
radiotherapy, the onset of lymphedema may be a longer 12 months (range 1 to 52
months), and for radiotherapy only, 25 months (range 6 to 156 months) [Pierquin B, Mazeron J-J, Glaubiger D. Conservative treatment of
breast cancer in Europe: Report of the Groupe Européen de Curiethérapie. Radiother
Oncol. 1986;6:187-198]"

lymphactivist, thanks so much for your valuable input. We cherish our people like you. I hope his thread keeps up because not only does it encourage people to learn how to stick up for themselves but we also can vent a bit which feels good especially with great folks that understand.

ketch,

I'm so sorry to hear that your LE has caused cellulitis.  I'm thankful, too, that our PS, Dr. Kline, gets LE.  At other major institutions where I started my journey, the MOs, ROs, BS, etc., were not on the same page about LE.  In my experience, the MO and RO were clueless and did not even want to hear about it.  So much for the "cancer care team" they advertise.

Have you and Dr. Kline ever had the discussion of LNT-Lymph Node Transfer?  I had mine 18 months ago and so far so good even after having 3 surgeries following the LNT.  I still wear a sleeve to fly or long drives.  I still go to PT-CLT every week to work on remaining bit of scar tissue, and the evil axillary cording. 

I have one LAST surgery in two weeks.  I have to admit that I do still worry just a little that I will wake up with a swollen arm.  I will be celebrating having recon surgeries over with for sure!  And celebrating being cancer free.

Prayers to you now and always.

Pink--Dr. K will not discuss LNT. Mine is truncal and he said it works better with arms.I'm done surgery-wise for a year. I need a break! We may revisit next year.