Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Pain Management: Getting the Relief YOU Need featuerrd Neal Slatkin, M.D., Michelle Rhiner, N.P. and moderator Jennifer Griggs, M.D., M.P.H. answering your questions about the best ways to deal with the physical pain and discomforts associated with breast cancer and breast cancer treatment.
Editor's Note: This conference took place in January 2004.
Questions from this conference
- Pain management for tissue expanders?
- Possible to live without pain medications?
- Nerve blocks a good idea for extreme pain?
- Familiarizing physicians with analgesics?
- Aromasin causes abdominal pain, empty stomach?
- Acupuncture for bone metastasis pain?
- Nerve blocking prior to surgery?
- What can be done about lymphedema pain?
- Pain medications affect endorphin production?
- Narcotic pain relievers: organ damage, lucidity?
- Pain medications suppress immune system?
- Safe amounts of pain relievers?
- Mix anti-inflammatory, muscle relaxant?
- Anything besides NSAIDS for joint pain?
- Possibly no cure for surgery pain?
- What to do for pain in hormone therapy?
- How long does pain last after breast cancer?
- Neuropathy pain caused by Taxol?
- Signs that pain is out-of-control?
- Can lack of estrogen cause bone pain?
- Decadron, Taxotere cause abdominal cramps?
- Glucosamine/Chondroitin okay with chemo?
- Help for dry, burning, metallic-tasting mouth?
- Help to alleviate tightness under arm?
- Question from Kem: I am one week out from having a mastectomy and the initial stages of breast implant reconstruction. Can you recommend a pain management protocol that enables me to return to work while managing the current discomfort from the insertion of the tissue expander and the discomfort that I have been told will follow each weekly expansion?
I think the most important thing in terms of pain control is not just immediate pain control, but pain control in the future. By that I mean preservation of strength and range-of-motion of the arm on the affected side—in other words, where you had the mastectomy done.
Women who have pain related to tissue expanders do well with anti-inflammatory medications, such as ibuprofen or naproxen. If they have any history of a bleeding tendency, then one of the coxib-type drugs, such as Celebrex or Bextra would be a good choice. There is also nothing wrong with taking Tylenol.
Sometimes, on occasion, the so-called low level opiate medications such as Vicodin can be useful, as well, for short periods of time. If the wound is healed—the staples or sutures have been removed—and there's quite a bit of local pain where the tissue expander is, then using a lidocaine patch such as Lidoderm applied over the area of pain is useful.
- Jennifer Griggs, M.D., M.P.H. Dr. Slatkin, a lot of patients don't like to work or drive when taking medicines like Vicodin. What would you advise somebody to do who feels she is sensitive to this type of medicine?
If you feel that you're impaired on a medication such as Vicodin or any of the opiates, or sometimes from any of the other pain relievers that have sedating properties, then you should not operate a motor vehicle at that time. However, over a period of a week or two, most people will develop tolerance to the sleepiness effects of the medications.
It's important to re-evaluate how you're feeling on the medications every few days. It's possible, when you first go on the medication, that you won't feel capable of driving. But a week or two later, perhaps you could operate a motor vehicle. The vast majority of studies done in this area have not shown significant impairment in driving ability in individuals using chronic opiates, provided that they have not recently had a significant increase in their dosage.
- Jennifer Griggs, M.D., M.P.H. So you would recommend that if somebody has a change in their dose, in particular to a higher dose, that they give themselves some time to adjust to the new dose?
- Neal Slatkin Not necessarily. Again, it would depend upon whether or not they felt sleepy or in any way impaired on the new dosage. There are instruments that patients can complete on the Internet that will assess their daytime sleepiness. One of them is the Epworth Sleepiness Scale. Patients can rate their sleepiness doing a variety of different tasks. Anyone who had a sleepiness level of five or less on that scale could safely operate a motor vehicle.
- Jennifer Griggs, M.D., M.P.H. Michelle, would you like to add anything?
I was thinking of some of the non-drug interventions, and the one that comes to mind is the use of cold packs. That has often been quite helpful in reducing postoperative pain, and it can provide comfort for several hours. So that could be tried as well.
Also, don't underestimate the use of relaxation and certainly other cognitive types of distractions such as music or relaxation tapes.
- Question from Leticia: Once you start taking pain medications, is it impossible to live without them?
The major concerns regarding drug dependence, which some people call drug addiction, really relate to one category of medication, and that is narcotics or opiates. They are better known by the term opiates, although many patients and physicians refer to them as narcotics.
In general, people taking these medications who do not have a significant substance abuse history have little to fear if they are taking the medication for physical pain. We do recognize that opiate medications have other effects that people can come to desire over time, such as relaxation and relief from anxiety. And if they're having problems with insomnia, medications can induce a sense of sleepiness.
You should not take opiate medications to relax, to ease distress, or to get to sleep. The use of medications in that way often does cause problems of dependence. You should use the medication for physical distress, not emotional distress. Again, if you use the medications that way, then dependence/addiction are infrequently problems.
- Jennifer Griggs, M.D., M.P.H. Dr. Slatkin, do physicians assess their patients regularly for issues of addiction, or do we depend on our patients to alert us if there's a problem?
In the use of strong pain medications—again, I'm speaking here of the opiate or narcotic medications—there has to be a partnership between the physicians and the patients. The doctor should ask the patients about their medication use. One question that Michelle and I often ask patients is, "Besides relieving your pain, what else are these medications doing for you?"
If the patient asks themselves that question, or if the practitioner asks that question and the answer is, "It relaxes me," then that may be the primary reason they're using the medication—and that needs to be further evaluated.
Certainly, if you're on these medications long-term, you need to be on a long-acting medication, such as sustained-release morphine, sustained-release oxycodone, or transdermal fentanyl.
In addition, you may need to take a short-acting opiate, such as Vicodin, oxycodone, morphine, or fentanyl. The last medication is administered to patients on a stick, which they can rub inside the cheek of their mouth and absorb the medication directly into the blood stream. For that reason, it tends to work faster than the other medications in relieving pain.
- Question from emilie: I was diagnosed in December 1999. I had a lumpectomy with axillary lymph node removal. I am now having extreme pain on the surgical side. The pain is like a cramping or charley horse. This comes and goes with no warning. I am being sent to a pain specialist for nerve blocks. Is this a good idea or not?
It would depend on where you're experiencing the pain. If the pain is along the surgical line or around that site, little, benign nerve tumor-like areas can form. Those are called neuromas.
What is not uncommon, particularly in women who've had axillary lymph node dissections, is the recurrence of pain in the axillary area. There is a nerve that's often cut at the time of mastectomy called the intercostal brachial nerve. That can result in burning pain, skin sensitivity, and even aching pain in the armpit area. Generally speaking, that type of pain is best approached with medications rather than nerve blocks.
- Question from Marilyn: As an Oncology/Palliative Nurse, how can we assist the physicians who are unfamiliar with good pain management so that patients receive the type of analgesics they may require?
The most important thing is that they have to keep informed. The nurses have to keep abreast of the latest literature on pain management and the adjuvant medications that would be used, perhaps off-label, for different pain syndromes.
I think the most effective way of changing one's behavior is by example. And, certainly, bringing to your physician-colleague's attention the patient's level of pain, with possible suggestions to make a difference, can oftentimes be helpful.
The American Pain Society has a wonderful booklet that can be used. It's a brand-new edition called "Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain". Oftentimes, physicians will recognize that organization as an authority and will take that booklet's recommendations.
- Jennifer Griggs, M.D., M.P.H. Patients are often more willing to talk with their nurses than with their doctors about how they're really feeling, and many physicians are aware of that.
- Question from Judy: My friend's breast cancer has metastasized to her liver and lungs. She's been taking Aromasin for six months, and it appears to be stopping any further growth of the lesions. However, she's been experiencing abdominal pain for the last two months. She also says that she feels like her stomach is empty even right after she eats. Can Aromasin cause abdominal pain or the sensation of an empty stomach?
Jennifer Griggs, M.D., M.P.H.
I have seen that with several of my patients on that medication. Obviously, when a drug is working, we are more willing to put up with side effects. On the other hand, your quality of life is one of the most important things to us.
What I have recommended to my patients who described symptoms that were not entirely clearly due to their medicine is a brief period off the drug. For example, your friend could stop the medication for three or four days and see how she feels. This may help sort things out. There are other options for management of her breast cancer if, indeed, this drug is making her uncomfortable. She can discuss those options with her doctor, as well.
- Question from Isabelle: Does acupuncture help for pain from bone mets?
I think the value of acupuncture is best assessed in each patient individually. There have been no well-controlled clinical studies that have shown the value of acupuncture in the treatment of bone metastasis pain. Therefore, it would be hard to provide a good scientific answer to that question.
However, some patients with bone metastasis involving the spine or the ribs may have associated with their bone pain an element of muscle pain. And I would expect that the value of acupuncture would be principally to treat that muscle pain.
- Question from Elle: Tell me about nerve blocking prior to surgery.
- Answers - Neal Slatkin In general, nerve blocks before surgery are done for purposes of analgesia and anesthesia so that the patient does not experience significant pain during the time of surgery. There's no indication that their use at the time of surgery will prevent pain from then occurring at the operated site postoperatively. Nor is there evidence that nerve blocks before surgery prevent the later occurrence of breast, axillary, or arm pain.
- Question from Myra: Apart from managing lymphedema, what can be done about the pain?
- Answers - Michelle Rhiner The most important thing is to be involved with a lymphedema clinic so that this can be managed with the appropriate dressings and compression sleeves. That in and of itself can provide a great deal of comfort, especially when there's a hypersensitivity to the skin. Physical therapists and occupational therapists with an interest in lymphedema can be helpful.
Occasionally, the arm pain may be due to other causes. For example, in women with significant lymphedema of the arm, there is a higher incidence of carpal tunnel syndrome, and it is worth at least considering that problem in any woman with lymphedema and hand, arm, or even shoulder area pain.
It's also very important to consider that the arm pain may not be directly caused by the lymphedema, but rather by some other problem, either of the nerves or of the bones. For any woman who has had lymphedema for a long period of time without pain, and then suddenly, or over a short period of time, experiences new pain, further diagnostic testing is warranted and must be done.
- Question from Susie: I've been told that taking codeine or morphine-like products will inhibit the brain from producing endorphins, so I allow the pain to build until I have no choice. Can you tell me if this is the case?
Ouch! It certainly is likely that the taking of pain medications may inhibit the body's own pain relief system. But the presence of pain is itself the clear indication that the body's own pain relief system is not up to the task of relieving the person's pain. Therefore, it is important to take strong pain medications that will provide significant pain relief.
If you wait too long to take medications—in other words, allow your pain to build up—higher doses of medication to relieve the pain are often necessary than if you'd responded in a more timely fashion and taken your medications earlier. It's easier to maintain pain control with lower doses of medications than to achieve pain control that often requires higher doses of medications.
- Question from BMiller: How do you convince a spouse with metastatic breast cancer to take a narcotic pain reliever when she fears harm to her liver or losing touch with everyday events?
If we considered all pain medications that might be used to relieve pain, the opiate or narcotic pain medications are really the safest. Now, I understand that that statement defies conventional wisdom. However, opiate use is not associated with liver damage, kidney damage, or damage to the heart, the lungs, the bone marrow, or any other significant organ system toxicity.
It is true that some patients become sleepy on the opiates or even confused. There are multiple approaches to be taken to that problem. Sleepiness should certainly not be a reason not to take medications.
If sleepiness is an issue, I would encourage your spouse to speak to her practitioner or pain specialist about alternative opiates, alternative pain-relieving procedures, other medications that may be added to allow the lowering of dosages of opiates, or other medications that can help reverse the sleep-inducing effects of the opiates.
- Michelle Rhiner The opiates are, indeed, safe to the various organs. But we must differentiate between the opiates that are combined with Tylenol, for example, and those opiates that are pure opiates and do not have any other aspirin, Tylenol, or anti-inflammatory drug combined with them. With combined opiates, you need to worry about effects on the liver or kidneys. If the opiate is combined with something like Tylenol or aspirin, there's a ceiling to how much you can use. You can have liver toxicity if you exceed a certain amount per day.
- Jennifer Griggs, M.D., M.P.H. It's ironic that the drugs we take without a second thought like acetaminophen (brand name: Tylenol) and aspirin are actually the ones Michelle is bringing up that pose more of a hazard than those we think of as stronger.
- Michelle Rhiner Sharing that information with your spouse should help to convince her that opiates are far safer medications and certainly very effective in relieving the pain.
- Jennifer Griggs, M.D., M.P.H. Some patients need to hear this message several times before it sinks in. You can enlist the help of your wife's nurse and physician in helping her think about managing her pain.
- Question from Lisa: Do pain meds, especially opiates, suppress the immune system?
- Answers - Michelle Rhiner Dr. John Liebeskind is well known or quoted as having said that pain kills. This is probably very accurate, as pain—when it's chronic in nature—will actually depress the immune system. Taking pain medication may, in fact, help the immune system by allowing you to improve your quality of life and enjoy pain relief.
We have to say that there is literature on opioids causing immune suppression. There have been a number of animal studies suggesting that opiates can have an effect on the immune system. There are even some studies that show that opiates can, in certain circumstances, either cause tumors to grow tissue culture faster or, conversely, slower.
This is an area of active investigation. At this time, there is no clinical evidence that opiates cause significant suppression of the immune system, to a point where it is of clinical significance.
- Question from Lisa: What type of ceiling are you speaking of? How many mg., say, of MS Contin?
When I was referring to a ceiling, I was referring to a combined opiate and the amount of a combined acetaminophen that one can take in a 24-hour period of time. That amount is 4,000 mg of acetaminophen (brand name: Tylenol) in an otherwise healthy individual and someone without liver problems.
In a pure uncombined opiate, many have said there is no ceiling; that is, you can escalate the dose of the opiate until there are side effects that are present and intolerable. For example, one individual may tolerate 1,500-1,600 mg per day of an opiate and not have any side effects, and another individual on the same drug may only be able to tolerate 100 mg before they have intolerable side effects. So it's very individualized, and there isn't a certain amount that can be given. It depends entirely on the person and the response to the opiate.
- Question from Cindy: Is it okay to take an anti-inflammatory, muscle relaxer, and pain medication (like Vicodin) at the same time?
First of all, I'd like to clarify that there are no anti-inflammatory muscle relaxers. There are anti-inflammatory agents and there are muscle relaxants. Most muscle relaxants work by relaxing the brain, and, therefore, relaxing the muscle. There are some exceptions to that.
In terms of combining anti-inflammatory agents in medications such as Tylenol, for example, one has to be wary of causing abnormalities to kidney function. Many cancer patients have or develop problems with their kidneys, particularly if they're actively receiving certain types of chemotherapy. For those individuals, it's important to combine medications only when necessary and, if that occurs, to have their kidney and liver function monitored at appropriate intervals.
- Question from AnneinMD: I have moderate to severe joint pain. We are not sure if it is from tamoxifen or from menopause (39 at diagnosis, lumpectomy, Epirubicin, Taxotere, and radiation). I cannot take the NSAIDs, even the coated ones, due to stomach problems. Is there anything else I can take?
- Answers - Michelle Rhiner Don't underestimate the effectiveness of Tylenol for bone pain or joint pain. Even the use of an extended relief form of acetaminophen, such as Tylenol Arthritis Strength, can be helpful in these situations.
- Question from Judy: I have experienced breast pain following three surgeries and radiation treatments. The pain is sometimes just a nagging annoyance, but at other times is a knife-like pain. My surgeon has told me there is nothing to be done for the pain. Can this possibly be true?
I think your surgeon is saying that there's nothing he can think of that's useful for your pain. In that instance, you should seek an opinion from a pain management physician as to your options.
It's almost always possible to provide some pain relief in cases such as this. It's often not possible to completely remove or eradicate the pain, and so it's important to have realistic expectations. However, relief certainly can be achieved at least to a certain degree in most cases.
- Jennifer Griggs, M.D., M.P.H. An accurate assessment of the source and type of the pain will be critical in providing you the right type of approach.
- Question from Cyn: The support I got during active treatment was very good, but now that I am on hormone therapy, the care is four times a year for fifteen minutes. Pain is definitely an issue, but I am not high-maintenance material anymore. What do I do?
What might be helpful for you is to have a pain diary and to fill up this diary for, say, one week prior to visiting with your physician.
In the diary, you will have average pain for the week, worst pain, and the least amount of pain. You'll have a body map where you'll be able to specifically point out where this pain is located and the various characteristics that are associated with your pain. It will help your physician, as well, to note the amount of medication you're taking, and the relief obtained when using these medications.
This will provide extremely important information for your physician. Having it filled out ahead of time is a wonderful review for the doctor.
There are wellness communities throughout the U.S. that offer various patient support and other types of support groups, including Breastcancer.org, which is a wonderful site to visit.
There are many web sites that allow you to download different types of pain diaries. One good example is on the Health in Aging web site (24 KB PDF).
- Neal Slatkin Michelle recently authored a booklet for Cancer Care entitled, "Controlling Cancer Pain - What You Need to Know to Get Relief." You can download a free copy of the booklet from the Cancer Care web site.
- Question from Barb: How long does breast cancer after-pain last? I was diagnosed in 2002, at age 36, and feel like an old lady with pain in my arms, shoulder, and back.
- Answers - Jennifer Griggs, M.D., M.P.H. It's so distressing to have a constant reminder of what you've been through!
Sometimes, the diagnosis of a severe illness accompanied by all of the sometimes harsh treatments that are directed to treat that illness can cause people to be inactive. You may previously have engaged in exercise or athletic activities that you've given up. A lot of types of pain you're describing—arms, shoulder and back—often represent muscle pain or myofascial pain, and that type of pain is best approached through a slowly progressive exercise program involving exercising, stretching, and muscle toning.
In addition, certain medications such as the tricyclic antidepressants, can be useful. Finally, some patients may benefit from trigger point injections when a small number of trigger points can be identified. Occasionally, the use of a transcutaneous nerve stimulator applied over the skin can also be useful. But in my own experience I've found that exercise is the absolute first modality of treatment to be utilized.
- Jennifer Griggs, M.D., M.P.H. It sounds like you're quite hopeful for this patient that she can have improvement in her symptoms.
- Neal Slatkin Yes. In fact, it's interesting the previous questioner asked about the so-called endogenous pain relief system, namely the production of pain-relieving substances within our own bodies. Exercise has long been held as a way of mobilizing that pain relief system.
- Question from Marieanne: Please address treatment of pain associated with neuropathy caused by Taxol.
I've long thought that physicians have a special responsibility to relieve the pain that they cause with their treatments, even though those treatments may be given fully appropriately and for the best of reasons. I think it's important for oncologists to be familiar with the various nerve pain medications.
There are several classes of medications that can be used to relieve nerve pain. Probably the oldest class is the tricyclic antidepressants. When the right agent is chosen and the medications are skillfully used, they often produce excellent pain relief.
Certain other classes of medications can also be useful, the most common being certain anticonvulsant or anti-seizure medications. The medication most commonly used in that category is Neurontin, which can be very safe and very effective.
Sometimes other classes of medication can also be useful. We often will use the drug Baclofen, which was initially approved to treat spasticity, but in certain nerve pain syndromes can be highly effective. Some individuals with Taxol-induced pain benefit as well, even from the anti-inflammatory medications, although those are not typically felt to be useful for nerve pain.
The next category of medications is the opiates. There are now several published trials in varying pain states indicating that the opiates can be quite useful in treating nerve pain. There are many other drugs as well, and the list I've provided above is by no means exhaustive.
- Question from Rita: What signs indicate pain is out-of-control?
Every person with pain can identify a pain intensity score that s/he feels is acceptable. By "acceptable," I mean this pain intensity does not interfere with normal daily activities or quality of life.
If you feel that your quality of life is affected—you're no longer able to be active, you no longer enjoy life, you feel sadness or anxiety, and you have decreased functioning—then you know that things are out-of-control. It can be the physical pain out-of-control or the emotional component of the pain that's also out-of-control and needs to be addressed.
- Jennifer Griggs, M.D., M.P.H. Sometimes we need permission to talk freely about just how much pain we're experiencing. Working with a doctor and nurse and other provider you trust can give you that permission. It can take a great deal of strength to admit that you're in pain.
- Question from Barb: I am HER+, have had a hysterectomy, chemo, radiation, and currently am on Herceptin with Arimidex. Can the lack of estrogen be causing bone pain?
- Answers - Jennifer Griggs, M.D., M.P.H. The class of drug that Arimidex (chemical name: anastrozole) belongs to often causes joint and muscle pain. Some women also have joint pains that can feel like bone pain when they go through menopause. Your doctor knows your situation the best and may be able to help sort this out for you.
- Question from Mew: I wanted to know if Decadron causes the severe abdominal cramps, or is that Taxotere?
- Answers - Neal Slatkin The truth is, I guess it could be either. People receiving Decadron on a chronic basis can certainly develop abdominal cramping, gastritis, or even ulceration. But that typically occurs only with chronic dosing, not with Decadron as it is most commonly used for short periods of time, as anti-nausea medication. So, my best guess is, it's probably the Taxotere.
- Question from Terri: The results of my pre-chemo tests all came back good, but I do have a touch of arthritis in my knees. I was told I could take Glucosamine and Chondroitin to help joints and bones. I will be on four sessions of Taxol after I finish my four sessions of AC. Can I still take my Glucosamine/Chondroitin while I am on chemo?
- Answers - Neal Slatkin So far as we know, you can.
- Question from Julie: I finished my chemotherapy one year ago. Since then, I have had a burning sensation on my tongue and on the roof of my mouth. I also have a metallic taste in my mouth, and I have a very dry mouth. Is there anything that you have heard of that can help this?
From a non-drug standpoint, you can try the Biotene products that might be helpful in normalizing the pH of your mouth. This may be extremely helpful in relieving some of the dryness and in decreasing some of the burning sensation if this is due to dry mouth. Commercial mouthwashes that have alcohol that can potentially dry the mouth even further should be avoided.
Things to stimulate the saliva may include sucking on hard candies such as lemon drops. There's also artificial saliva as MoiStir, Salivart, or a prescription for something known as Salagen that can also be obtained from your physician.
We have some experience in treating some of those conditions with topical morphine swishes. It's important that the morphine solution used not contain alcohol.
We also have some experience in using an anesthesia drug called Ketamine as an oral rinse. Our experience with those drugs is almost exclusively in patients who have mucositis or stomatitis, but it's something worth asking a pain physician about.
- Jennifer Griggs, M.D., M.P.H. It's worth asking your physician if there are other things that might be causing your symptoms. For example, problems with your salivary glands could be a cause.
- Neal Slatkin Occasionally, patients can have nutritional deficiencies, most notably zinc deficiency, that can cause a perversion of taste and other oral problems. Vitamin B12 deficiency can also cause that problem. So it's probably worth checking the Vitamin B12 level.
- Question from Lisa: I had a mastectomy in March of last year. I had 37 lymph nodes taken out, followed by chemo, and then radiation. I am still experiencing tightness and pain under my arm. I do stretching exercises every day, and by evening it feels swollen under my arm and extremely tight. What can I do to help alleviate the tightness?
- Answers - Michelle Rhiner There may be some edema that's contributing to this tightness that can be relieved by elevating the arm. Again, the use of compression sleeves might be in order.
Although you mention strengthening exercise, you don't mention range-of-motion exercises. It would be important to know whether you have full range of motion of the shoulder on that side, particularly since you had such extensive surgery on that side.
It's just as important to maintain range-of-motion, and perhaps more than to have muscle strengthening. Your pain could be arising on a nerve basis, muscle basis, or the basis of scarring of the skin—the underlying tissues of the skin. For the latter problem, range-of-motion exercises are often highly useful.
Occasionally, if there's a significant muscle component to the problem, injections with either local anesthetics or even agents such as Botox can be useful in relieving discomfort and in enhancing range-of-motion. The nerve pain medications we've already mentioned can also help.