Intimacy After Breast Cancer: A Practical Guide to Dealing with Your Body, Relationships, and Sexby Gine M. Maisano
Congratulations! You survived breast cancer. You made it through the diagnosis, the surgeries, and the therapies. Everyone you know is congratulating you—telling you to celebrate and be happy. So why do you feel so alone? While medical professionals prepare you for the physical effects of cancer, they seem to forget about your spirit, your emotions, and your
Congratulations! You survived breast cancer. You made it through the diagnosis, the surgeries, and the therapies. Everyone you know is congratulating you—telling you to celebrate and be happy. So why do you feel so alone? While medical professionals prepare you for the physical effects of cancer, they seem to forget about your spirit, your emotions, and your sexuality. How do you put cancer behind you and go back to being the woman you used to be? In Intimacy after Breast Cancer, two-time breast cancer survivor Gina Maisano compassionately discusses this and more in an open, honest way, helping you rediscover the woman you were before your battle with this disease.
Part One of this book is about regaining control of your body and your spirit. It examines ways in which you can deal with the emotional and physical scars of breast cancer so that you can regain confidence and self-esteem. Part Two is about reclaiming your sexual self. In candid detail, and addressing both married and single survivors, it explores how you can rediscover your sexuality after breast cancer. Throughout the book, stories contributed by other survivors offer a wealth of personal perspectives and specific examples of physical recovery and emotional healing.
Love and intimacy do not have to end because of breast cancer. In Intimacy after Breast Cancer, Gina uses expert advice, scientific research, and firsthand experience to help you make the difficult transition from cancer patient to vibrant, self-confident woman.
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Intimacy AFTER BREAST CANCERDEALING WITH YOUR BODY, RELATIONSHIPS AND SEX
By GINA M. MAISANO
Square One PublishersCopyright © 2010 Gina Maisano
All right reserved.
Chapter OneYour Treatments Are Done. Now What?
You are finished with your breast cancer treatments, which is great! But they have undoubtedly left you with a host of collateral damages. Outwardly, your body has gone through many changes. You have had, at a minimum, one surgery-although you've most likely had closer to five once all was said and done. Additionally, you may have had radiation. The surgical side effects have almost certainly caused changes in your breasts, torso, and the arm on the affected side. If you had chemo therapy, you most likely lost your hair. You also gained weight, your skin is no longer the same, and if you weren't already in menopause, you are probably in it now.
This was quite a battle you waged and it shows. But the good news is that most of these adverse effects are not permanent. There are ways to aid and deal with healing, and in time, you can get back to your old self-maybe even become someone completely new who blows your old self away! Let's take a look at the various side effects you are facing, considering both those that don't go away, as well as the ones that do, eventually.
SHORT-TERM SIDE EFFECTS
There are certain unavoidable side effects that come with breast cancer treatment. Some only last for the short term, while others can be permanent. It is important to remember that every problem has a solution. In most cases, the short-term effects solve themselves. Your hair will grow back, your immune system will improve, and as the last bits of chemicals leave your body, you will get stronger, look better, and feel like yourself again. There are some things you can do to speed up these processes, though, and they are as follows:
Your hair will grow back on its own, really. And it will be as it was when you lost it. There are a few things you can do to assist its growth, though. For instance, the natural supplement Biotin will help your hair and nails get strong and grow again. Adding more protein to your diet in the form of eggs, lean meats, and dairy will also aid in your hair's recovery process. Over-the-counter baldness remedies, such as Minoxidil, have not been shown to help postchemo hair growth; however, stimulating shampoos like Nioxin do help increase your scalp's circulation, and based on anecdotal evidence by breast cancer survivors, they help hair grow faster. There are no conclusive scientific studies to back this up yet, but it can't hurt to try. See page 41 for more information about hair care.
Certain chemotherapy agents cause neuropathy, which is a numbness or pain in your fingers, hands, or feet. If you took any of the taxanes, including Taxol, Taxotere, or Abraxane, the neuropathy will take about three to six months to improve. However, taking vitamins [B.sub.6], [B.sub.12], folic acid, glucosamine, and chondroitin can help this process. There are also some medications that can help if your case is severe, but try the natural supplementation first and wait a couple of months before you ask your doctor for a prescription. This is because the drugs that are typically prescribed to treat neuropathy have side effects that can affect other parts of your life, as we will discuss later. If your neuropathy can be improved naturally, that will be your best choice in the long run.
You may find that you tire easily now, but in time you will get your energy back. During the healing process, don't be alarmed if you occasionally go from feeling wonderful to suddenly experiencing a chemo-crash flashback, leaving you exhausted like you felt during treatment. Although it sounds like an oxymoron, the best remedy for fatigue is exercise. Your energy levels will also improve if you eat a good diet, which means avoiding all processed foods including white flour, sugar, and junk food. Focus on eating nourishing foods that will stay with you and you should tire less often. That being said, don't hesitate to give yourself permission to take a rest if you are still experiencing fatigue. There is a lot going on inside your body as it recuperates, so let the process work itself out.
It's not you. Chemo really did mess with your brain. You did walk into the kitchen for something.... What it was, however, is anybody's guess. Rest assured, you are not losing your mind. The answer will come to you. As will that word you can't seem to remember-probably something difficult, like "bath mat." Studies have finally concluded what cancer survivors have claimed for years: They are foggy and forgetful after treatment. They can't remember names, forget what they needed at the market, have no clue when their mother-in-law's birthday is (well, at least now you have an excuse!), and so on. It will take you a good year before you are operating on all cylinders. The only thing to do in the meantime is to make lists. Then, remember where you left them.
LONG-TERM SIDE EFFECTS
In addition to the short-term side effects just discussed, chemotherapy has left you with some things you will always have to live with, or at the very least, be aware of. As with anything, however, early detection and treatment can sometimes reverse the changes that are taking over your body, so listen to it. You know your body better than anyone else. When it is telling you something, it whispers it first. Catch a problem in the whispering stage and it won't be a problem for much longer. But wait until it is screaming and you may be stuck with it. The following information discusses some of your treatments' more serious side effects so you can learn how to detect and deal with them.
Of all of breast cancer's long-lasting side effects, nothing is more anger provoking and unfair than lymphedema, which is the swelling of the affected side's arm, hand, and even torso, due to the loss of one or all of the lymph nodes during surgery. Lymphedema occurs when protein-rich lymphatic fluid is unable to drain properly, and thus becomes trapped inside the skin's extra-cellular spaces. Since the lymphatic system works near the surface of the skin where the vessels are tiny, any scarring from surgery can affect the flow of the fluid and make it harder for it to circulate throughout your body.
Lymphedema is a serious medical condition. You must be aware of it because if you were to get an infection in, say, your arm, it could spread throughout your entire body and become very serious-even life threatening. Plus, the swelling it causes is not only horrible to look at, but it can sometimes become painful. Left untreated, you may begin to feel joint pain and mobility may be affected, which can lead to irreversible damage.
It's important to realize that lymphedema may not happen right away-it could strike as many as five years after your diagnosis and be triggered by something as simple as a mosquito bite. Regardless of when it surfaces, it is painful, disfiguring, and potentially life threatening. So, if you see your fingers, hand, or arm swell, get to a doctor right away and start treatment.
The Three Stages of Lymphedema
There are three stages of lymphedema. Learn them well so you will immediately know when you should get to the doctor. Your breast surgeon is the best choice, but any of your doctors can refer you to a good clinic that specializes in lymphedema treatment. The stages are as follows:
1. The first stage is the pitting stage, which means that when you press your thumb into the arm the indentation stays there for awhile before returning to normal. This is the ideal stage to catch lymphedema because with early treatment, you can still reverse it.
2. The second stage is the spongy stage, which means that instead of indenting, the skin on the arm will bounce right back when you press down on it. Additionally, this is the stage during which permanent hardening of the arm tissues can begin. It also means that fibrosis has begun. Fibrosis is scar tissue that has built up between the tiny blood vessels because they have been stretched so much by the swelling, and it may add to the pain you experience, as well. When lymphedema has reached the spongy stage, it is not always reversible.
3. The third stage is the hard stage, and it is the worst in which to catch lymphedema. During this stage, the skin neither indents nor bounces back when you press your thumb into it. Your arm is also very big, and the swelling is permanent and irreversible. Your joints may hurt and you may even have mobility problems.
As previously mentioned, listen and pay attention to your body. Do your best to catch lymphedema in its first stage. If you do, you will save yourself from a lot of problems and pain.
What to Look for and When to Look for It
You must take extra care to learn the difference between natural swelling, like the kind that occurs on a hot and humid day, and unnatural swelling, like the kind that is caused by lymphedema. Natural swelling goes down once you are inside and elevate your arm. Unnatural swelling does not-your arm will keep getting bigger with no relief, no matter how much you elevate and baby it. Another sign of unnatural swelling is when your arm begins to feel like plywood and is a paler color than your other arm.
If you feel that something is not right or you are concerned you are suffering from unnatural swelling, speak with your doctor as soon as possible. He or she can direct you to a lymphedema specialist who can help you stop the progression before it gets any worse. After all, the last thing you need is another permanent change in your life.
The best treatment available for lymphedema is known as Complex Lymphedema Therapy. It is comprised of lymphatic drainage, compression bandaging, skin care, and physical therapy. This method creates new pathways for the lymphatic fluid, and also prevents it from becoming worse.
You will have to wear compression bandaging while in therapy, which can last from one week to one month. But it is a small price to pay for preventing a permanent disfiguring condition. And even though it may feel like another battle wound-another dreadful reminder of your cancer and all you have been through-this is one you can nip in the bud. The only time it is truly "bad" is if you ignore it and it gets to be too late to reverse or treat. Therefore, as soon as you recognize the symptoms, act immediately. You will be glad you did!
At-Home Lymphatic Massage
In addition to professional treatment, there is also an at-home massage technique you can use to improve lymphedema. It was created to redirect the drainage of your arm through the superficial blood vessels that are now doing the work of your missing lymph nodes. This do-it-yourself massage needs to be taught by a professional, but the following information will give you a quick idea of what it's all about. You can train your body to compensate with what it has available. It just takes time and patience.
The key to this massage is to wake up the other lymph nodes in your body and to get them to act as a siphon, pulling the fluid away from your affected arm. By massaging the lymph nodes under your collarbone, behind your shoulder, down by your waist, and in your groin, you can actually pull all the built up lymphatic fluid away from your arm and into your circulatory system where it can be flushed out. The massage of the arm goes in a downward motion towards your existing lymph nodes, making them do the job of your missing ones. Ask your doctor or lymphedema specialist to show you how to perform self-massage.
To prevent lymphedema, you need to reduce the production of lymphatic fluid. Everything you do that increases blood flow to your arm or hand, such as lifting or scrubbing, also increases the lymphatic flow, so these and other strenuous, repetitive exercises should be avoided. You should also avoid extreme heat (hot baths, doing the dishes, etc.), exposure to the sun, and extreme cold. Additional items and activities that can trigger or worsen lymphedema include clothing that is tight around the affected wrist, tight bras that leave an indentation, carrying heavy bags with the affected arm, and getting your blood pressure tested on the affected arm. So, try to avoid these whenever possible. See the inset entitled "Lymphedema Triggers" (page 15) for even more things to be aware of concerning lymphedema.
Hormonal Hot Flashes
Chemo can have a profound effect on your hormones and may throw you into premature menopause. If your cancer was fueled by estrogen, your doctor may even opt to surgically induce menopause by removing your ovaries, or to chemically induce menopause by administering a monthly injection. With either of these occurrences comes a host of problems. But luckily, they all have solutions.
No matter what, all women will face hot flashes at some point in their lives. When you have had breast cancer, though, they may occur years earlier than they normally would have. And on top of that, you don't have the luxury of taking low-dose estrogen to counteract menopausal symptoms. This is because if your cancer was fueled by estrogen, the last thing you need to do is feed your body more estrogen. You shouldn't reach for plant-based hormones, either. There is quite a bit of scientific controversy surrounding phytoestrogens, which include soy and black cohosh. Since they mimic estrogen and reproduce the same effects of exogenous estrogens, you should probably stay away from them. You need to speak with your doctor about this.
So what can you do to alleviate hot-flash symptoms? First, let's talk about what items make hot flashes worse so you can do your best to avoid them. Coffee, tea, anything else with caffeine, alcohol, chocolate, spicy foods, hot tubs, saunas, and other things along those lines all intensify and increase hot flashes. Avoid them and reduce your hot flashes. Also, get your thyroid checked. Sometimes an incorrect dosage of a synthetic thyroid hormone, such as Synthroid, can make your hot flashes worse.
Exercise, dressing in layers, and avoiding the above-mentioned triggers will all help naturally alleviate your hot flashes. For night sweats, try keeping a fan that has a remote control in your bedroom. That way, should you wake up steaming, you can throw off your covers and turn on the fan without having to get out of bed; thereby enabling yourself to fall back to sleep faster. Also, use only natural fibers in your clothing and bedding-cotton breathes, polyester does not.
Vitamin E, Green Tea capsules, and B vitamins all help with hot flashes, as well. There are also a variety of medical options. Certain antidepressants can help, but be aware that SSRIs, which are a class of antidepressants, can also kill your libido. Additionally, there is a drug called Neuronton, which was originally created as an anti-convulsant medication and was later discovered to have the ability to deaden nerve pain in shingles patients. Since then it is sometimes given to help combat menopausal symptoms and lingering neuropathy. Like SSRIs, though, it decreases your libido and your ability to enjoy sex or reach orgasm. Finally, Donnatal, a form of phenobarbital that is normally given to people who have irritable bowel syndrome, has helped many women with hot flashes. Taken at night, it not only helps you sleep, but it can keep the night sweats away. Talk to your doctor about which options may be right for you.
Having little to no desire for sex is both physical and psychological. Physically, it is no wonder you have no interest in sex, for all the reasons mentioned earlier. Emotionally, it is hard to get your mojo back because you have been through so much that you truly have a form of post-traumatic stress disorder. Take an inventory of all the medications you are on, including antidepressants, nerve-ending medicines, pain-killers, and others, as some of them can cause loss of libido. Then, try to switch to alternatives that do not have that side effect. The best antidepressant in terms of not causing the loss of libido is Wellbutrin. But as always, this is a discussion you and your doctor need to have.
Excerpted from Intimacy AFTER BREAST CANCER by GINA M. MAISANO Copyright © 2010 by Gina Maisano. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Gina M. Maisanotwo-time breast cancer survivoris the founder of the No Surrender Breast Cancer Foundation, a not-for-profit organization dedicated to improving the lives of women with breast cancer (www.nosurrenderbreastcancerhelp.org).
She is also a writer, whose articles on breast cancer issues have appeared in numerous magazines and journals. Gina lectures frequently on her personal journey with the disease. Currently, she resides on Long Island, New York.
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