New News on Lymphedema

Lymphedema has long been known as a life long complication from breast cancer surgery.

I am not a doctor but here is my understanding of lymphedema: the lymph system is a second system in your body connecting hundreds of lymph nodes which help clean out your body and heal injuries or diseases. When you have surgery the lymph system is often impaired because it does not heal and reconnect after. If the lymph system is unconnected to the rest, you can end up with swollen body parts, or lymphedema.

After breast cancer if a bunch of nodes are removed under your arm as with an axillary node dissection, you can end up with problems. In previous decades when a radical mastectomy was routine treatment for breast cancer, lymphedema occurred regularly for patients. Now they skip start with the sentinel nodes which are assumed where breast cancer starts to spread and then only if they are positive, do you get an axillary node dissection.

What they told me is that if you have an axillary node dissection the chances were high of getting lymphedema. I was told that do not strain your arm, no shots or needle pricks, or blood pressure cuffs, no purse straps over your arm, no, no, no, no, no.... Basically baby that arm for the rest of your life. I do regular exercises at the gym but I do them at lower weights than my right so I don't strain it. Blah, blah, blah, blah....

So with me, I had one tiny positive node in the sentinel node so I had an axillary node dissection after my lumpectomy. Then I had chemo and radiation. Then I followed all directions and was fine, until I fell the following winter and used my left arm to break my fall. And voila, lymphedema (and no its never goes away).

But now there is new information on lymphedema. I got this from Barbara over at Let Life Happen where she wrote about "Debunking the Lymphedema Risk". There was a recent new study done on causes of lymphedema.

"The study found that chemotherapy, more advanced disease and greater than normal body weight significantly increased the risk of lymphedema for patients who had surgery of lymph nodes under their arms to assess the spread of cancer. Radiation therapy also strongly correlated with lymphedema for patients undergoing axillary node dissection (ALND), the more invasive form of axillary surgery.

"“Lymphedema rate was significantly lower among patients undergoing axillary surgery without these additional risk factors,” says study co-author Judy Boughey, M.D., FACS, professor of surgery and research chair, department of surgery at Mayo Clinic. “We must recognize that today, breast cancer is no longer a disease treated primarily through surgery, and many therapies impact the risk of this chronic condition. Risk factors appeared to be cumulative, affecting women in a step-like fashion.”

So this was my chronology with my stage II breast cancer: lumpectomy (June), axillary node dissection (July), chemotherapy (August through December, lumpectomy (December), radiation (late January through early March). I was normal body weight before breast cancer. After breast cancer about the same. My weight gain came later.... So I did not have advanced disease nor overweight but I did have chemotherapy and radiation.

Nevermind me, I just find it very interesting that the sole cause was not the surgery but the combination of surgery, radiation, and chemotherapy. 

What Are The Odds?

Today is Kentucky Derby Day, what are the odds your horse will win? My money is on Creator. I know nothing about horse racing but in my family we always place dollar bets on the Derby. The only time I ever saw my grandmother gloat was when she won $3 on the Derby.

With cancer, what are the odds your cancer will come back? With rheumatoid, fibromyalgia, or other chronic diseases, what are the odds your disease will progress quickly? I don't know. Nobody knows. Our doctors give us estimates on what could our prognosis be and suggest treatment protocols. They hope to improve our odds.

The media is also full of 'advice' on what we can eat, drink, or do to reduce our odds of any of these issues. We can drink red wine or skip alcohol. We can eat super foods, drink smoothies, and get our exercise. Or we can eat bonbons and drink sugary soda. Then we just cross our fingers and hope for the best.

I mean I can do everything I could possibly do but none of my ailments are going away any time soon. Cancer twice is etched permanently in my medical history. Then the degenerating disks in my spine and my knee with a full torn ACL aren't getting any better either. My RA and fibromyalgia are staying around too.

 So I do what feels right for me. What else can I do? I live with the odds. But I am going to enjoy myself and not stress out about them.

Yes Clinical Trials Are Trials

Yesterday I read this article on a clinical trial in France where one patient is brain dead and five others are hospitalized. I was very shocked by this. It was run in full compliance with local regulations, under medical supervision, and it was immediately stopped.

We need to remind ourselves on a few things about clinical trials. First of all clinical trials great. They serve a wonderful purpose in the development of new drugs. It is crucial that they continue. All cancer people hear about clinical trials and whether they are eligible and if they could help them or allow them to help future patients. They often often are a last ditch life saving attempt by patients.

Second of all, if you are selected for a clinical trial you do not know if you will even receive the medication being tested or a placebo or a previously approved medication. This is what leads some patients to travel overseas for treatment where they can get the new medication that is not yet approved at home.

Third of all a clinical trial does different things at each level of the trial from the US National Library of Medicine:

"Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

• Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
• Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
• Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
• Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use."

You will note the first three phases cover the drug's safety. And Phase IV is why more research is always needed.

But back to France. That clinical trial that proved fatal was a Phase I trial where they were testing different dosages. Obviously they had the wrong range in mind or something else when they started. It is a very rare occurrence that deaths occur in clinical trials but not unheard of. I think that I have heard of other complications from clinical trials but I do not have any data to back this up.

So I think this death and other medical issues relating to the clinical trial raise the issue of clinical trial safety - something I think that we often overlook as patients. I know as a patient I think of clinical trials as wonderful things and help ourselves and future patients. But I never sit and wonder if I could be hurt by participating in one. Now I think I will consider it.

About that risk assessment

There is all this talk these days about what you can do to reduce your risk of cancer, dementia, chicken pox, or the common cold, among a million other things. You know all the advice - eat broccoli, exercise, don't drink, lose weight, exercise, eat margarine no eat butter, drink red wine no white - and all it does is confuse the crap out of us.

Then they start to give people personal risk assessment for an ailment and expect us to believe them. How much conflicting medical advice do you hear on a given day? A lot. Eat red meat and chocolate, no don't, yes, well a little, and the famous words - in moderation. How can you be expected to believe anything?

When you are told what your risk of some thing is - whether being diagnosed with cancer or being hit by lightening, don't you always harbor that little thought in the corner of  your brain that of course they are only talking about other people and not you or anyone you care about. Its always going to affect those other faceless people you don't know.

So why all the surprise when a new study shows that one in five women don't believe their breast cancer risk? I can honestly tell you I was very surprised by both my cancer diagnoses. I thought my back pain was the result of muscle strain and not the permanent debilitating state of the disks in my spine. I thought my aches and pains that turned out to be rheumatoid and fibromyalgia were just normal aging.

Sometimes I think, they were all wrong and I am really a healthy person who can live the way I used to - working full time, having a social life, and going off on adventures regularly that involve beaches, mountains, and the great outdoors.

Seriously, we hear so much conflicting medical advice and then if someone gives us a risk assessment, we are supposed to believe them? I think a risk assessment is like listening to the weather forecast - there is a good chance Saturday will be rainy and it should clear out for Sunday but watch out for a hurricane next week. How do they really know?

Are we overdoing it?

More women are opting for double mastectomies, even if they do not have cancer in both breasts. Here are the numbers:

"The rate for women choosing to remove both breasts when only one has cancer jumped from 6.7% in 1997 to 24% in 2005,..."

"About 70% of women in the United States who have both breasts removed after a cancer diagnosis don't have a proven medical reason for undergoing the procedure,..."

So why are we doing this? Lots of reasons:

• Implants have fewer problems than in the past.
• Plastic surgery has had many advances.
• We want it now mentality.
• The overly hyped awareness of breast cancer

If we look at these last two reasons, they may be the root of all the reasons. In the past decade or so, we have been accustomed to the instant gratification or instant problem solving. Amazon started bringing us our purchases overnight. Problems are more easily solved. We can find information instantly so we want to fix things instantly as well.

Pinkification has also caused more awareness and availability of information.

"A growing awareness of breast cancer survivorship makes undergoing mastectomy not as foreign or frightening as perhaps it once was. An online search shows a seemingly limitless number of breast cancer support groups, with a growing collection dedicated to women considering preventive surgery.

Dr. Mark Sultan, chief of the division of plastic and reconstructive surgery at St. Luke's/Roosevelt and Beth Israel Medical Centers in New York, said he's seen a 20% increase in five years of high-risk, yet cancer-free women coming to his office seeking mastectomies.

These patients often arrive telling him what kind of surgery they want because they've read about certain procedures online, and in many cases, they've viewed hundreds of before-and-after photos as well."

These are examples of how the world of medicine and being a patient is changing. But maybe we are overdoing it. A double mastectomy is not a minor surgery. I have heard of women being in surgery for 10 or 12 hours with multiple surgeons and months of recovery. Never mind the problems of lymphedema and other risks in the future. 

I think I would prefer to keep my body as intact as possible if I possibly can.

You won't know until you try it

Do you remember the commercial for Life cereal? 'Mikey likes it!' As children we were encouraged to try new things - maybe we would really like lima beans if we would just try them. (And I knew the cat would eat them if I put butter on them.)We were also the daredevils who had not yet developed the fear of pain as we rode our bikes down the steep hills (without helmets as they were not yet invented).

Some how as adults we remain skeptical of many things and have developed a healthy sense of self preservation and aversion to pain and ailments. I see this all the time as friends and people I know through online boards are not sure if they should try a medication because of fear of possible side effects. Maybe the years of seeing the single page of medical ad followed by the two pages of side print on side effects has brainwashed them.

I find this mind set a bit silly. Do they have ESP and know they will get all the possible side effects? If your doctor is recommending a medication, perhaps they are doing it to either potentially save your life, relieve pain, or cure you? They went to medical school and are more familiar with the medication than you are. Yes we can do our research and convince ourselves we will not benefit from the medication and will develop all the side effects known to man. STOP! The side effects don't happen to everyone.

If you are concerned about a medication and its side effects, talk to the prescribing doctor and ask them to give your more details on it and what you should be on the look out for. You can do research on websites such as drugs.com or rxlist.com and see the real numbers of what the chances are of a specific side effect. Tamoxifen is known to rarely cause uterine cancer - but this is so far fetched that it is not listed as a side effect on either site.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I was on Lyrica for about 2 years for back pain until it stopped working for me. During that time a friend said to me that her doctor had prescribed it to her but she was concerned about the side affects and possibly becoming addicted to it so she wouldn't take it. I recently heard from her and she is still dealing with a lot of pain and not taking it.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I am now on my third or fourth back pain medication. When one stops working and my doctor suggests another one, I give it a shot. I don't hesitate at this point. If I am living a pain filled life and there is any hope for pain free living, I am eager to try it. After breast cancer the idea of Tamoxifen and then Femara to significantly help prevent recurrence, why not. I am having osteopenia issues and my oncologist has said she wants to keep me on Femara even though it may be increasing my bone loss but she said then she would put me on something to counteract that for a year or so after I am done with it. I can live with that. I may not be happy about it but I can cope if the alternative is greater risk of stage IV cancer.


All I can say is you won't know until you try it. What is it about the fear of the unknown that keeps us from trying new things that could broaden and saves our lives? There are millions of therapists happy to make money off those who suffer from this fear.

A good explanation

This sounds like a math lesson, or worse a statistics lesson. But what it really is a good, clear, understandable explanation of risk reduction and how to interpret it and what it really means. In other words, what it says without coming out and saying it is that they are trying, once again, to confuse us. Yes that evil 'them/they' which are the conspiracies against all of us, are at it again.

But really, it does help explain things and uses the example of the chocolate study that was announced recently that said 39% risk reduction for heart attacks if you eat chocolate. This is how they explain it:

"The study found that the combined risk of heart attack and stroke for those who ate the most chocolate was 39 percent lower than those who ate the least. That’s the relative risk reduction - what’s the absolute risk reduction?

For those who ate the most chocolate, researchers documented 2.72 cases of heart attack or stroke per 1,000 people per year, or .272 percent - the modified risk. For those who ate the least, there were 1.44 cases per 1,000 people per year, or .144 percent - the starting risk.

Subtract those two and you get .128 percent. (That’s actually nearly 50 percent lower than .272 percent, but researchers made adjustments for other risk factors like blood pressure to get to the relative risk reduction number of 39 percent).

In other words, there are two ways to look at these results: Eating chocolate decreases your combined risk of heart disease and stroke by 39 percent, or it decreases your risk from about .272 percent per year to .144 percent (before adjusting for other risk factors). That’s a pretty small reduction."

So in other words, when ever you hear that something reduces your risk by a certain amount, you need to ask what the risk was without the reduction and what is the real difference in the rate of diagnosis.

I wouldn't try this

I think the whole concept of stem cells and stem cell transplants is pretty cool and could open the door to many medical advances. However, I would not try with Governor Perry did. He went had back surgery in July and a very controversial stem cell transplant. He had fat cells taken from his body by liposuction and they were put back into his spine and blood stream.

The controversy is that stem cells are done with other cells - not fat cells. It is not known if fat cells will turn into a good kind of cells or cause a blood clot or turn into cancer cells. In addition the cells were grown in a petri dish where their sterility could have been compromised.

There are additional concerns because he is a powerful and influential person. Will his risky behavior influence others to have similar risky behaviors? I mean this goes back to the 'if all your friends jumped off a cliff would you' argument that you had with your parents at one time in your life.

My opinion is that I would prefer to have medical procedures that are proven and safe. He did this because he has a bad back. Um, I have a bad back and I'm not rushing to try anything like this anytime soon. I only have one spine and one blood stream. If either one of those was compromised, that would be a VERY bad thing. He may be a risk taker, but I am not. (I am not getting into the political discussion if he was president would he be a risk taker that could jeopardize the country.)

Needles and more needles

I don't like needles. Well, I am okay with the sewing kind but not the kind they stick into you. Its not like I will pass out on the floor but I just can't see them or look at them or see them going into me or anyone else (why do they always show that on TV? - ICKY!) or... well you get the picture. Me and needles are not BFFs. When I arrive at the blood lab for tests, I always say 'don't show me the needles'.

So yesterday it was with great interest I read this article that coughing can ease the pain of a needle going into you. Well, I think this is a big fat lie. When you cough, you react and move. What if when you cough, you move and they miss? OUCH! I'm not trying it.

Then there was a second article which is somewhat upsetting. They are recalling needles used for port injections because they are making little slivers of silicone which can get into the port or the patient. These needles were manufactured between Jan 2007 and August 2009. I had my port from September 2007 to March 2008 (or somewhere around there). I am not reassured by this at all. Do I have little slivers circulating around inside me? Well, I guess they might be better than cancer cooties but still a port was supposed to be helpful not potentially dangerous. And they don't tell you really what the risks of little slivers is. Thank you for the (lack of) reassurance.