Cancer Treatment & Lymphedema (It Doesn’t Have to Happen)on Sep 08 in Breast Cancer by David
While writing the very first post in this section of our site (Fighting Breast Cancer), I began to write an example of things we were going through right after receiving word of Sumi’s diagnosis.
I’m sitting here typing this for you on my computer, going back over those first days and remembering what sites I went to… so I Googled “breast cancer” which is what I did that day, the second day after Sumi’s diagnosis (the first day was an absolute emotional wash). The first results were obviously the ‘big breast cancer sites’ and that is where I went. But today when I clicked on BreastCancer.org one link on their site jumped out at me. It was the link “Arm Lymphedema” (you can go to the link here). Now please understand, that when I first read this site I didn’t even notice this link, and before Sumi’s treatment, I knew nothing about this subject. I was lucky if I knew how to pronounce the word correctly. But now, I know quite a bit (as a patient, or patient’s husband). Don’t let me lose you and please don’t misunderstand what I’m going to say next… I’m not a doctor and no, I don’t know more than BreastCancer.org. But our breast cancer surgeon, Dr. Suzanne Klimberg knows more about Arm Lymphedema than most surgeons in the world.
What Lymphedema is in Relation to Breast Cancer Treatment
According to the site I mentioned above (BreastCancer.org), lymphedema is:
“Lymphedema (pronounced LIMF-eh-DEE-ma) is a side effect that can begin during or after breast cancer treatment. It isn’t life threatening, but can last over a long period of time. Lymphedema involves swelling of the soft tissues of the arm or hand. The swelling may be accompanied by numbness, discomfort, and sometimes infection.
There’s no reliable way to find out your level of risk for lymphedema, but by taking proper precautions you CAN greatly reduce your chances of developing the condition.”
The lymphedema we’ll discuss here is the type that is caused from the necessary removal of lymph nodes under the woman’s arm, because the nodes are either cancerous or suspected that they might be. The lymph system, among other things, acts as a ‘drainage system’ for fluids coming out of her arm, and when some of those lymph nodes are removed, the arm can not drain properly. So the “swelling of the soft tissues of the arm or hand” mentioned by BreastCancer.org above, is caused by this lymph node removal.
Quoting an article published in the Arkansas Times where Dr. Klimberg was being interviewed on this subject…
To prevent the arm swelling, Klimberg has developed the Axillary Reverse Mapping (ARM) procedure. The new technique evaluates the ways in which fluid drains through the lymph node system in the arm through the injection of blue dye. The dye is used to map the drainage of the arm.
“Mapping the drainage of the arm decreases the chances of unintended disruption of the lymph node system during surgery and reduces the risk of developing swelling in the arm,” Klimberg said. “We are the first to study lymph node drainage in the arm and are now using the ARM procedure as standard procedure at UAMS.”
The ARM Procedure Developed by Dr. Suzanne Klimberg
Dr. Klimberg has created a method called ARM (quite appropriately named I would say) that stands for Axillary Reverse Mapping. In plain people terms, it means that they inject a blue dye into the arm, and observe (during surgery) the blue dye draining back through the lymph nodes. The lymph nodes under the arm are the first place that invasive type breast cancers (Sumi had invasive ductal carcinoma, and its the most common form of breast cancer women get) will spread to when it leaves the breast. During the surgery phase of the treatment, the surgeons look to the lymph nodes under the arm, since the first area that breast cancer will spread to is there. Whatever your doctor gives you as treatment prior to a mastectomy (if that is the method that is chosen, and we will speak much more on that in future posts), such as chemotherapy or radiation therapy, or both… during the surgery they may find that some lymph nodes need to be removed because they are cancerous or suspected to be cancerous. The lymph nodes are what helps our arms ‘drain’ fluids out of the arm into the body. If lymph nodes are removed because of being cancerous, in normal cases those lymph nodes can’t help drain the arm any more.
But Dr. Klimberg has created a method where she can actually graft the lymph nodes that are removed back into the lymph nodes that remain, so that the arms can still properly drain. She travels around the world training different surgeons on this method (as well as countless other methods that she has developed).
Like I said, I’m certainly no doctor. But we have been through this, and learned much from Dr. Klimberg throughout this time. Sumi had 10 lymph nodes removed from under her right arm (mainly for precautionary reasons, Dr. Klimberg said), and she has no symptoms of lymphedema whatsoever (and at this writing, her surgery was eight months ago). So we speak from experience and from what we learned having Dr. Klimberg as Sumi’s breast cancer surgeon.
The ARM Procedure is NOT a Common Practice
Having said that please understand this, and I am saying this for you or your loved one’s good, not to make a doctor or surgeon angry. The breast cancer surgeon or doctor in your care may not know how to do this procedure. This procedure is not common practice nor common knowledge yet, even though Dr. Klimberg has been performing it for at least 3 years now. The ARM procedure is not a ‘life or death’ procedure, it is more about what the lady’s life will be AFTER the treatment. And even though yes, we all are first and foremost concerned about our loved ones’ health… we still do want the best quality of life for her after this is all finished.
I know it sounds shocking, to think that the ARM procedure is not done across the board at every hospital… but its true. And we know its not realistic to think everyone can go and get treated by Dr. Klimberg (although Sumi and I just met a couple from Pensacola, FL when we were in the waiting room for Dr. Klimberg, who had come all the way to Arkansas to be treated by her. She said that she had a friend who was a Harvard Medical professor, that when she asked him who she should go to, her friend said that Dr. Klimberg was the best in the country). But when you are discussing this particular topic with you or your loved one’s breast cancer surgeon, bring up this subject and ask about this ARM procedure. At least you are equipped with the knowledge that this procedure exists, and that it is enormously successful in most cases.
Our Motivation for Doing This
Things such as the ARM procedure not being practiced (or even known about for that matter) is a huge motivator for Sumi and I why we are doing this.
This kind of thing was shocking to me and Sumi. We learned many, many of these things over this past 15 months or so, going through all of the treatment, surgeries, and many conversations with our doctors and surgeons. And one shocking thing we learned, is that if Sumi who had invasive ductal carcinoma walked into one of the best hospitals in Honolulu, Los Angeles, New York, Kansas City, Dallas, Atlanta, or Little Rock, Arkansas… most likely she would NOT have been treated in a ‘standard manner’ at all of these different locations. In other words, breast cancer treatment is not “okay you have this type of breast cancer with these types of circumstances… so we are going to treat you ‘this’ way”. You would think that each of these places would treat each patient with some type of standard procedure… but that is NOT the case. If Sumi would have been treated in several different ways. You would think, and we thought, that the best of hospitals in the country would have a ‘standard’ method of treating breast cancer. THEY DON’T. It is what many breast cancer surgeons refer to as “Treatment by Chance”. And no, I didn’t make up that term… and its not meant to be a ‘scare tactic’.
And now back to the BreastCancer.org site… one of the top websites for Breast Cancer information…
When you follow that link I gave you for information about what to do about Arm Lymphedema, who is at risk, and how to minimize your risks of getting it… there is NOT ONE WORD SAID ABOUT DR. KLIMBERG’S PROCEDURE that in a little over 90% of her cases, the women did NOT get Lymphedema. And frankly, Lymphedema really sucks. We had a friend who got it after breast cancer surgery. The patient has to elevate their arm quite often to reduce the swelling. It makes simple things like getting dressed much more difficult sometimes, even simple things like wearing jewelry.
The BreastCancer.org site mentions things like using Dove or Ivory soap, but don’t use Dial. Huh?? I’m sorry, I don’t mean to be rude… but that is the information given? Don’t use Dial soap? And no mention of how to avoid Lymphedema in the first place by going to a surgeon who is trained in this procedure? Just to be candid as the husband whose wife just went through all of this… you gotta be kidding me. Dr. Klimberg is not the only surgeon who can do this procedure… there are many. But there are many who don’t know how to do it as well. I don’t look to make anyone angry at BreastCancer.org… but what is the motivation of not even mentioning this procedure? Is it fair to the patients who are facing this? Look, by the grace of God and the love of my sister Wendi who had went through breast cancer a year and a half before us with Dr. Klimberg… we had the best breast cancer surgeon in the world. Literally. But what about all of these ladies who are about to enter into this, and they turn to find information, and are short-changed when doing so? Again… this is one of the many reasons why we are doing what we are doing.
Here are some links that give information about Dr. Klimberg’s ARM method:
And of course there are many more. Just do a Google search on “Axillary Reverse Mapping Dr. Klimberg” and you’ll find plenty.
We hope very much that this is helpful to many.
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