Latest from Rockson on LE risk

kira66715

So, the LRF (lymphadema research foundation) has a new name, and lots of webcasts, and I found this on their site, from Stanley Rockson, who told us that ketoprofen would cure LE, then didn't release the research, but now has a new study where he's using ketoprofen on women getting ALND to see if it prevents LE.

Here's the link to the clinical trial:

http://clinicaltrials.gov/show/NCT01893879

Experimental: Arm I (ketoprofen)

Patients receive ketoprofen PO TID for up to 1 year in the absence of disease progression or unacceptable toxicity.

This is his take on LE risk--but the 6% risk from SNB is raised to 25% if rads are involved.

See what you think.

http://lymphaticnetwork.org/news-events/lymphedema-risk-from-stanley-g.-rockson-m.d.-f.a.c.p.-f.a.c.c

What exactly is lymphedema?

Lymphedema is the accumulation of a particular kind of fluid, typically in one part of the body. So, in breast cancer, for example, it can appear in the arm on the same side as the cancer, after lymph nodes are removed from the armpit region for cancer staging. Lymph is the protein-rich body fluid that accumulates when the lymphatic system for fluid transport is damaged.

Why is the lymphatic system important?

Fluid transport is one very important component, but many do not realize that the lymphatic system is part of the immune system. It fulfills the function of ‘immune trafficking,’ the process whereby infection-fighting cells can be mobilized to the tissues that require assistance. When the lymphatic system is compromised by surgery, trauma, or improper development, the affected part of the body is prone to recurrent infection because of the faulty surveillance mechanism.

Why is it that I was not warned about the risk of lymphedema prior to my surgery?

Regrettably, many doctors are still very under-educated about the lymphatic system in general and, specifically, about the problem of lymphedema. Here at Stanford we’re trying to rectify ignorance about lymphedema through specific educational initiative and I believe that nationally awareness is also increasing. Patients can also help their doctors to learn. Physicians must learn from their patients about their lymphedema experiences so that they will be better prepared to deal with their future patients.

As a breast cancer survivor, what is my risk of getting lymphedema?

Estimates vary and, fortunately, the risk has been progressively declining. In the beginning, breast cancer surgery carried a 50% risk of lymphedema development. Today, patients who have axillary lymph node dissection have a lifetime risk of 15-25%. For individuals whose surgery is limited to sentinel node techniques, without adjuvant radiation, the risk is about 6%.

How does surgery affect my risk of lymphedema?

The risk is chiefly aligned with lymph node removal. Individuals that have just lumpectomy, or other surgical interventions, are at such low risk that it is impossible to estimate. Sentinel node techniques, alone, are used in about 40% of current breast cancer patients. The sentinel node technique is defined as the removal of no more than four lymph nodes, where the risk is about 6%. If you have more than four lymph nodes removed, the risk rises to 15% to 25%.

Does radiation increase the risk of lymphedema?

Yes, radiation can traumatize the lymphatic system equivalently to surgery, even if surgery is not done. However, just as all surgery is not alike, not all radiation therapy is the same. In general, radiation therapy confers risk that is roughly equivalent to axillary lymph node dissection and increases the risk associated with surgery if both treatments are performed.

If I have had lymph nodes removed under one arm, do I have to worry about the lymph nodes in other areas of my body?

No. The lymphatic system is present throughout the body, but lymphedema is a regional disease that affects only the part of the body that is subjected to surgery or radiation.

Do I have to worry about this for my whole life?

The proper term to use is ‘vigilance.' Stated positively, the primary risk for lymphedema development is in the first year following surgery and radiation therapy, when 90% of the cases occur. By the end of 3 years, 95% of the cases will have appeared. If you don’t have lymphedema after 3 years of vigilance, the risk remains, but it is quite small. If you take the proper precautions and use the proper surveillance, the risk can be maintained as small as possible.

What about exercise after cancer surgery?

While, in the long run, exercise is very beneficial, it is very important to give your body adequate time for healing and to not push the exercise early on. This is not to say that patients shouldn’t be very active at mobilizing the shoulder, because women are also prone to ‘frozen shoulder’ after a mastectomy. However, do not push the physical activity until the body is ready to do it. For the first three to four weeks, it is important to remain relatively inactive and, thereafter, to try to become progressively more active.

And what about exercise during radiation therapy?

There are similar concerns. One can expect a certain amount of inflammation related to the radiation, and it would be important to avoid over-taxing the lymphatic system. Accordingly, it is reasonable to ‘take it easy’ during radiation therapy.

Should I be using my arm (or leg) for everyday activities?

Yes, absolutely. Bear in mind, however, that physical activity increases blood flow, which increases the formation of lymph in the arm or leg at risk. You don’t want to push the lymphatic system ‘over the edge’. Once you recognize your threshold for activity, you can gently extend your limits over time, perhaps, in addition, by using a Class I compression garment during activity that is perceived to be physically stressful.

After surviving breast cancer surgery and chemotherapy, I’ve developed lymphedema. I’m angry that I have to go through the rest of my life with swelling, wearing a sleeve and restricting my activities. Is there anything you can suggest to help with that?

The anger and the frustration are very understandable and very common. It seems like a second punishment after enduring so much to get your life back. Unfortunately, at this time, with current treatment techniques, the incidence of lymphedema breast cancer survivors remains at 15-25. There are no simple answers to this question. It is important to strive to keep life as normal as possible in the face of the fixed demands related to the presence of lymphedema. Seeking support from your fellow patients is also often a wonderful way to collectively share the experience and help to mitigate the anger. The ability to talk about the problem is an important step toward acceptance.

Prior to my cancer diagnosis, I led a very active lifestyle. Now I am nervous that my former activities could cause lymphedema to emerge. What do you advise?

My earnest advice is that once you are a cancer survivor, you must enjoy the gift of life. This means not placing boundaries on what your definition of being alive. It is true that there is a small, finite risk of lymphedema appearing for the first time in somebody at risk, or becoming worse in someone who already has it. However, with the appropriate precautions, those risks are quite small. It is very important, activity by activity, to weigh the risk-to-benefit ratio. There is some finite risk of lymphedema with activities like surfing rock climbing, to choose two random examples. But you have to weigh the importance to your life of those continuing experiences. With or without ‘risky’ activities appropriate treatment for lymphedema is essential when the lymphedema appears. It is very important to faithfully use the garment that is provided to you, particularly during the activity poses theoretical risk. It is very important to maintain surveillance for changes in the limb-at-risk. Take precautions against infection when there are breaks in the skin and seek medical attention early if any changes are observed. When you go outside, put on a sun block, because sunburn can aggravate lymphedema. When you are working in the kitchen, be careful. When you’re in the garden, be careful, and wear gloves if there is the possibility of skin trauma. But what you want to lift, lift. What you want to do, do. And where you want to go, go. Just be careful.

Falk Cardiovascular Research Center

Stanford University School of Medicine

300 Pasteur Drive

Stanford, California 94305-5406

Stanley G. Rockson, M.D., F.A.C.P., F.A.C.C.

Allan and Tina Neill Professor of Lymphatic Research and Medicine

Professor of Medicine

Chief of Consultative Cardiology

carol57

I think the term 'sentinel node' is used quite loosely, because it often requires removal of more than one node. My procedure was called 'sentinel node' but I lost 5 nodes. Surgeons who quote a 6% LE risk when advising a sentinel node biopsy may be understating the risk unless they follow with the explanation that more than one node may be required, and the risk would grow to 25% or so. My SNB was a super abundance of caution, and had I been told of the true LE risk (I was told less than 3%) I would have at least reconsidered my options.

I can't tell from his comments if he is estimating LE risk from sentinel node removal alone or combined with mastectomy (as in my case) or lumpectomy. Also, is he assessing risk for just arm LE? Seems like SNB + lumpectomy creates higher than 6% risk for truncal LE, although I haven't taken the time to sort through my piles of studies to see where I got that notion from.

Kira, thanks for posting this. Even when the message has some holes in it, it's better to keep LE risk on the radar screen than not, and Rockson's list of precautions are pretty good. I hope those of us who are too aware of LE risk (after the fact) will send this to what seems like a constant stream of friends, loved ones and acquaintances who get the BC diagnosis.

pipers_dream

Carol, please, what would you have done differently? I ask because I'm reading this stuff and getting really, really depressed and then I looked at an alternative website where they advise you to try to keep your nodes if possible but I'm wondering how one would communicate that to the surgeon and whether that's even good advice, b/c of course there is a lot of stuff out there. I believe that I would elect extra chemo to clean up the risk of possibly not having nodes removed but just so confused at this point--dx less than 2 wks ago and all and have been to the surgeon once and it seems they're moving so slowly! MRI a wk from today. SNB sometime, not sure when. They said they'd schedule after the MRI.

carol57

pipersdream, certainly the first consideration has to be whatever it takes to improve the lifesaving outcome, and to make you feel confident that you have taken the right steps to do so. My case was unusual, because the 'super abundance of caution' really was just that. I was diagnosed with LCIS, which is not cancer but a marker for increased risk of cancer. It was found in both breasts, in multiple locations on each side, which is typical for LCIS. Standard of care is not automatically prophylactic mx, but my family history is so extensive I opted for it. All my imaging found nothing else, but after changing my care from home in west Michigan to Chicago, where I could get a diep reconstruction, I was stunned to hear the Chicago BS tell me that her radiology team wanted me to re-do all my imaging and the pathology. They were not convinced there wasn't something sinister tucked in behind a papilloma all the imaging had easily found.

I was worried about insurance and wanted to just move on, as I am self-employed and had rescheduled and turned down work to accommodate surgery and recovery, and the thought of pushing it out another month or so was overwhelming. So I questioned doing another series of mamms and probably another MRI and maybe another biopsy (I'd already had 3), and the Chicago BS suggested SNB instead--go forward with the prophy bmx and recon, but do SNB during the procedure. That's when I asked about LE risk and it was pretty much dismissed, so I agreed to the SNB. In the end, path was clear including the SNB, so my home team had it right. In hindsight, had I understood my risk for LE was probably 15% at least, I would have at least talked with my insurance company to see if re-do of all the imaging would be covered.

So...in my case, the SNB was clearly elective, but it does not sound like that's the case for you. If there's some question about whether you will benefit from it or not, get a second (and a third, even) opinion. It IS overwhelming, and I hope you can just tell your surgeon that you're confused, and ask to be walked through the pros and cons of the value of SNB for your BC diagnosis, staging and treatment. And post your questions and worries in the ILC section of this wonderful bc.org resource. One thing I have learned is that we may think we're alone and solving new problems, but there are many who have walked the pathway before us. I am so indebted to a few women here and that I met in 'real life' who helped me puzzle, deliberate, and decide on so many issues.

I'm so sorry you find yourself here, but I'm glad you are asking questions and seeking answers. Do keep us all posted on what you decide. And remember too...LE risk is never 100% no matter what the treatment combo. My mother had every stinkin' node removed and crazy amounts of rads, which was standard in her day. She is 84 --surgery and rads when she was 38--and she never got LE! Do what you need to to take care of YOU...and if you opt for that SNB, we can point you to / send you some resources that include strategies to try to minimize your LE risk, and to maximize the opportunity for an early diagnosis so it can be dealt with at its most treatable stage.

Hugs coming your way....

Carol

pipers_dream

Thank you Carol. Your kindness made me cry. For the umpteenth time today but this was a good one.

carol57

pipers_dream, I imagine that the amount of tears shed by bco.org members would fill a small ocean...you've got plenty of company on that one!