Post Treatment

This is a particularly controversial area of clinical medicine. While every patient desires close followup, the insurers and those engaged in the field of “evidence-based-medicine” point to the lack of survival benefit associated with the close monitoring of tumor markers and other harbingers of early relapse. It is indeed a dilemma, as both physicians and patients are comforted by negative workups and regular followups. It may, in the future, become necessary for patients to assume the costs of their followup visits after an adequate period of time has elapsed. As a rule, for most solid tumors, three years of followup with NED and certainly 5 years of followup with NED, is considered adequate. Despite this, some tumors, among them, ER+ breast cancers can manifest late relapses. This is a particularly controversial area of clinical medicine. While every patient desires close followup, the insurers and those engaged in the field of “evidence-based-medicine” point to the lack of survival benefit associated with the close monitoring of tumor markers and other harbingers of early relapse. It is indeed a dilemma, as both physicians and patients are comforted by negative workups and regular followups. It may, in the future, become necessary for patients to assume the costs of their followup visits after an adequate period of time has elapsed. As a rule, for most solid tumors, three years of followup with NED and certainly 5 years of followup with NED, is considered adequate. Despite this, some tumors, among them, ER+ breast cancers can manifest late relapses.

Starting an exercise program after treatment is a great way to regain mobility and increase energy levels. I would suggest a rehabilitative exercise program that will correct any postural imbalances caused by treatment/surgical procedures and in general get you moving in a safe environment. Begin with simple stretches focusing on the areas affected by surgery. For example, if you had a mastectomy, start by performing gentle stretches that will open up your chest muscles and strengthen your back muscles. By performing exercises that rebuild your foundation first, you will be able to progress to more challenging programs before you know it.

For more information on rehabilitative exercise programs go to http://www.movingonfromcancer.com The easiest way to get back into exercise is not to stop during treatment. I remember the doctor told me to walk and begin exercise the day after my bilat MX. It was freezing out and my coat would not fit over my drains, so I walked the stairs in my building. When finished, I was exhausted and slept for 16 hours. From then on I made sure I walked every day until the doctor said I could run. I also went to physical therapy, which was a big help. She gave me safe exercises to do to regain muscle function and insisted I ride the exercise bike and did some stretching and massage to help with the healing. I really believe the exercise helped me heal quickly, both mentally as well as physically. If you have had a MX, be sure to buy a zip front snug sports bra as this will make exercise much more comfortable than if wearing the surgical bra.

I just posted a guest blog by David Haas on my site, some good info on this topic: http://elynjacobs.blogspot.com/2011/08/health-fitness-helps-cancer-patients.html" target=_blank>http://elynjacobs.blogspot.com/2011/08/health-fitness-helps-cancer-patients.html

I think support groups are really important because the others completely understand your feelings. Families often want 'it' to be over when treatment ends. Unfortunately there is just so much more to deal with.

The short and long-term physical and mental issues, body image, sexuality, appetite, etc.

Sometimes our families just need guidance as to how to help us. They want to, but feel as lost and confused as we do. I founded www.annieappleseedproject.org to provide information from the patient perspective. If I were to be approached by a new client with the situation you describe, I would want to emphasize a few areas:

1) grieving the loss of the relationship. Grief comes in stages, but not necessarily linear ones that once you pass through you are done. Grief is an individual process that will take as long as it takes for each person. There is no right or wrong way to grieve. There's your way and others' ways.

2) obtaining support from other people. For some, there are friends and family available to take up the slack when it comes to support. For others, support is something a person must seek. Whether you get support from informal (friends, family, partners, clergy) or more formal (counselors, therapists, psychologists, therapy groups) sources, isn't important. What is important is that you get it. Avoid the temptation to judge the fact that you might have to seek out formal supports. If it feels unfair that you do, remember life aint fair. But that doesn't mean you are stuck feeling sorry for you self. Turn your anger into motivation and get out there to find the support that can and will be there for you.

3) building self-esteem and self confidence. The loss of a love can be hard for anyone; deflating self-esteem, motivation and stamina. For a cancer survivor, it can sometimes be compounded by body image issues related to changes in weight, hair loss or surgery. Begin by reconnecting to yourself. Again, let go of the urge to judge yourself. Look for your basic intrinsic value and branch out from there. You are a unique specimen, a survivor, and a fighter. You have a beauty within you that transcends appearance. You may need to find that beauty again to let it shine. Then watch the moths come flitting to the flame!

4) dealing with your anger. Anger can be a highly motivating emotion, but the trouble is sometimes what we are motivated to do with that anger. Getting revenge is great for a country western songwriter but not that practical for the rest of us. Start by expressing your anger to a friend, family member, in writing, to a therapist. Don't judge it, feel it and let it go. Then start looking at the reality of the situation. If s/he left you now, then you are at least able to know where you truly stand so you can adequately prepare for your future without the false impression that they will be there and leave you down the road. Could s/he be lacking in moral character? Yup. Could they just be at the end of their own coping? Yup. Should you have seen it? Maybe? No. Weren't you a little busy with the whole cancer thing? Come back around to your innate worth and ability to heal and grow. If you have come through cancer, you can beat anything, including heartache. You may grow a thick skin for a while, but that's normal. That skin will shed when you are ready to love again.

5) dusting off dating skills. When and if you are ready, it's time to reconsider how you want to approach dating. Expect that it's going to feel foreign and strange to put yourself out there. You will be risking rejection, but you will have the same power to reject someone else. You might wrestle with somewhat paranoid thoughts: "Why are they interested in me? What could they possibly see in me?" That is just your Poison Parrot talking to you. Toss a towel over its cage and let it drift off to sleep. Get out of the house. Get involved in activities you enjoy. Meet people at work, at school, at church, in a club, where you volunteer. Just be among people. Get used to it again. But take the pressure off yourself to "find love." We don't efficiently find love, love finds us. At least the best loves I've know happened when I wasn't looking.

As a professional counselor, I empathize with anyone dealing with treatment and other life issues simultaneously. Life doesn't go on hold just because we're in treatment or healing. When you begin to think "Why me?" follow that up with "Why not me?" and listen closely for an answer.

I'm glad you say you are O.K. I thank you for the question and hope my answer spurs some discussion.

This is my survivorship plan:
Visit your oncologist every three to six months for the first three years after the first treatment for breast cancer, every 6 to 12 months for years four and five, and every year thereafter.
Schedule a mammogram one year after your first mammogram that led to diagnosis of breast cancer, but no earlier than six months after radiotherapy. Obtain a mammogram every 12 months thereafter.
Perform a breast self-examination every month.
Schedule a gynecologic visit every year This is my survivorship plan:
Visit your oncologist every three to six months for the first three years after the first treatment for breast cancer, every 6 to 12 months for years four and five, and every year thereafter.
Schedule a mammogram one year after your first mammogram that led to diagnosis of breast cancer, but no earlier than six months after radiotherapy. Obtain a mammogram every 12 months thereafter.
Perform a breast self-examination every month.
Schedule a gynecologic visit every year

In my book, I talk a lot about this subject. In fact, I end the book with a list of Do’s and Don’ts: Things you can and cannot do to help a person who’s been diagnosed with a life-threatening illness. I’ve heard from my readers that it is one of the chapters that helped them the most.

If you are the one who has changed and you are unsure of how to reintroduce yourself to your family and friends, I think it is really important to be open about who you are now and how you are feeling.

I underwent a major metamorphosis, which I talk about in my book. Some of the things were very obvious, but others were more subtle. I was lucky in that my husband realized the differences pretty quickly and on the ones that weren’t so pleasant, i.e. lashing out in frustration, he was good to point out to me that he was in my corner and I didn’t need to be so harsh. That usually brought me back down.

For others, I found myself just being honest. I would say things like, “I just don’t think that way anymore,” or “I hope you won’t be offended but I’m not the person I used to be and it may take a while to get used to the new me.” Most of my friends were pretty wonderful about tiptoeing around me until they figured it out.

I am sure, if you are like me, there have been a lot of weepy moments. I didn’t get embarrassed by them, I would say, “You know, ever since I got cancer, my bladder has taken up residence behind my eyeballs.” Joking about what was going on put everyone, including myself at ease and I found a lot of empathy that way.

I also had to re-evaluate several of my relationships and I walked away from some of them, including the one I had with my mother. I learned that poison comes in many forms and the relationship I had with her was toxic. I could not afford to have toxins in my life anymore and so I made the decision that I had to get out of it. If I can give you one piece of advice is it to give yourself permission to do whatever you have to do to protect yourself during this vulnerable time.

The more time passes, the more comfortable you will become in your own skin and the more comfortable others will become with you. Just don’t feel guilty about what you need to do and don’t hesitate to express your desires where others are concerned.
New Answer In my book, I talk a lot about this subject. In fact, I end the book with a list of Do’s and Don’ts: Things you can and cannot do to help a person who’s been diagnosed with a life-threatening illness. I’ve heard from my readers that it is one of the chapters that helped them the most.

If you are the one who has changed and you are unsure of how to reintroduce yourself to your family and friends, I think it is really important to be open about who you are now and how you are feeling.

I underwent a major metamorphosis, which I talk about in my book. Some of the things were very obvious, but others were more subtle. I was lucky in that my husband realized the differences pretty quickly and on the ones that weren’t so pleasant, i.e. lashing out in frustration, he was good to point out to me that he was in my corner and I didn’t need to be so harsh. That usually brought me back down.

For others, I found myself just being honest. I would say things like, “I just don’t think that way anymore,” or “I hope you won’t be offended but I’m not the person I used to be and it may take a while to get used to the new me.” Most of my friends were pretty wonderful about tiptoeing around me until they figured it out.

I am sure, if you are like me, there have been a lot of weepy moments. I didn’t get embarrassed by them, I would say, “You know, ever since I got cancer, my bladder has taken up residence behind my eyeballs.” Joking about what was going on put everyone, including myself at ease and I found a lot of empathy that way.

I also had to re-evaluate several of my relationships and I walked away from some of them, including the one I had with my mother. I learned that poison comes in many forms and the relationship I had with her was toxic. I could not afford to have toxins in my life anymore and so I made the decision that I had to get out of it. If I can give you one piece of advice is it to give yourself permission to do whatever you have to do to protect yourself during this vulnerable time.

The more time passes, the more comfortable you will become in your own skin and the more comfortable others will become with you. Just don’t feel guilty about what you need to do and don’t hesitate to express your desires where others are concerned.
New Answer

I think I was born a survivor. As one of the first Rh Negative babies to survive a complete blood transfusion when I was two days old and six weeks premature, I believe my survivor gene kicked in from the get go. When I was a kid, my father died of cancer, then my first husband died of cancer and now I'm the cancer survivor. Each of of these experiences have given me insight into what cancer families need. I've seen children get lost emotionally and husbands leave their wives, resulting in generations of cancer families who feel abandoned and vulnerable.

After I was diagnosed, I knew I had the personal experiences, the knowledge and drive to make a difference in how other cancer families coped. Not all of us know how to survive a crisis. I have this burning desire, to teach each member of the cancer family survivorship skills that hopefully will serve them well for the rest of their lives.

With a few exceptions, my support group has embraced the changes in me since breast cancer. I was the girl who did everything right to begin with--diet, exercise, mammograms, etc--so when I was diagnosed with breast cancer, a girlfriend abandoned me. I didn't take it as a reflection on me, but on the fear she was experiencing. She actually told me that if I could get breast cancer, there was no hope for her. Since her lifestyle was a mess--sugar, no exercise, chicken fried steak & cream gravy--to remain my friend would have meant she would need to confront those things and she chose to stay in the land of denial. I've since talked with many survivors and realize that's not an uncommon thing. I think I was born a survivor. As one of the first Rh Negative babies to survive a complete blood transfusion when I was two days old and six weeks premature, I believe my survivor gene kicked in from the get go. When I was a kid, my father died of cancer, then my first husband died of cancer and now I'm the cancer survivor. Each of of these experiences have given me insight into what cancer families need. I've seen children get lost emotionally and husbands leave their wives, resulting in generations of cancer families who feel abandoned and vulnerable.

After I was diagnosed, I knew I had the personal experiences, the knowledge and drive to make a difference in how other cancer families coped. Not all of us know how to survive a crisis. I have this burning desire, to teach each member of the cancer family survivorship skills that hopefully will serve them well for the rest of their lives.

With a few exceptions, my support group has embraced the changes in me since breast cancer. I was the girl who did everything right to begin with--diet, exercise, mammograms, etc--so when I was diagnosed with breast cancer, a girlfriend abandoned me. I didn't take it as a reflection on me, but on the fear she was experiencing. She actually told me that if I could get breast cancer, there was no hope for her. Since her lifestyle was a mess--sugar, no exercise, chicken fried steak & cream gravy--to remain my friend would have meant she would need to confront those things and she chose to stay in the land of denial. I've since talked with many survivors and realize that's not an uncommon thing.

The first thing I'd say is that the notion of "normal" after treatment ends is something most of us yearn for but not something you can ever *really* attain -- especially if you're hoping to get back to the way things were before you found out you had cancer. Understanding this and learning how to cope with post-treatment recovery is crucial.

You have just been through an enormous trauma, and traumas always have consequences. It's very important to understand that, and to know that if you feel you need any kind of help dealing with the emotional aspects of recovery, you can start to heal if you get help. There are Oncology Social Workers, Therapists, and other kinds of qualified people who can help you deal with any aftershocks. Ask your doctor for referrals.

Understand that this is a very vulnerable time for you. Most likely you are wishing you could put it all behind you, most likely all the non-cancer patients/survivors in your life are not going to understand how you feel (don't hold this against them--they just can't, as they have not traveled in your shoes) and are expecting you to "be all done." Sorry, but you are not. Now begins the slow process of recovery. Be patient with yourself, be gentle to yourself, find a balance between pushing yourself and giving yourself time to rest. Connect with other survivors and learn how to live in the moment. You get through a difficult moment, you get through another, and next thing you know you've made it through the day, one step closer to your "new normal."

During treatment, your life is structured, you see your medical team regularly, you have a purpose and it can feel like a huge shock to all of a sudden be "out there" on your own. It's a relief to be done with treatment, but it can feel daunting too. Be aware that you might feel this way--I suggest finding things like a support group, an art-therapy or writing class, etc. through your Cancer Center to meet other survivors and share support. Also look for organizations such as http://www.cancersupportcommunity.org/ And, as well as TalkAboutHealth online, there's a wonderful "Breast Cancer Social Media" chat on Twitter every Monday evening. Follow the hashtag #bcsm and join the discussion. As a matter of fact, we recently addressed this topic!

Just remember that this "New Normal" can and will lead to good things if you are open to it. There is a light at the end of the tunnel, but it will probably take you a lot longer to get there than you expected, so settle down for the long haul and breathe deeply. I have done this three times; it might not be fun all the time, but it can be done, and IT DOES GET BETTER. The first thing I'd say is that the notion of "normal" after treatment ends is something most of us yearn for but not something you can ever *really* attain -- especially if you're hoping to get back to the way things were before you found out you had cancer. Understanding this and learning how to cope with post-treatment recovery is crucial.

You have just been through an enormous trauma, and traumas always have consequences. It's very important to understand that, and to know that if you feel you need any kind of help dealing with the emotional aspects of recovery, you can start to heal if you get help. There are Oncology Social Workers, Therapists, and other kinds of qualified people who can help you deal with any aftershocks. Ask your doctor for referrals.

Understand that this is a very vulnerable time for you. Most likely you are wishing you could put it all behind you, most likely all the non-cancer patients/survivors in your life are not going to understand how you feel (don't hold this against them--they just can't, as they have not traveled in your shoes) and are expecting you to "be all done." Sorry, but you are not. Now begins the slow process of recovery. Be patient with yourself, be gentle to yourself, find a balance between pushing yourself and giving yourself time to rest. Connect with other survivors and learn how to live in the moment. You get through a difficult moment, you get through another, and next thing you know you've made it through the day, one step closer to your "new normal."

During treatment, your life is structured, you see your medical team regularly, you have a purpose and it can feel like a huge shock to all of a sudden be "out there" on your own. It's a relief to be done with treatment, but it can feel daunting too. Be aware that you might feel this way--I suggest finding things like a support group, an art-therapy or writing class, etc. through your Cancer Center to meet other survivors and share support. Also look for organizations such as http://www.cancersupportcommunity.org/ And, as well as TalkAboutHealth online, there's a wonderful "Breast Cancer Social Media" chat on Twitter every Monday evening. Follow the hashtag #bcsm and join the discussion. As a matter of fact, we recently addressed this topic!

Just remember that this "New Normal" can and will lead to good things if you are open to it. There is a light at the end of the tunnel, but it will probably take you a lot longer to get there than you expected, so settle down for the long haul and breathe deeply. I have done this three times; it might not be fun all the time, but it can be done, and IT DOES GET BETTER.

I think it is important for the patient to heal on an emotional, mind-body level, but I also think people need to understand that it is helpful to change the cancer-friendly environment in their body that might have allowed the cancer to develop. Many doctors treat the cancer with surgery, chemo, radiation, but then fail to coach patients on how to avoid recurrence. A healthy lifestyle is key and a supportive, loving environment is essential. Be sure that your loved ones and friends are on board to support your new way of life. Your family may not like broccoli, kale or spinach, for example, but should understand that you may desire to skip the french fries and eat your veges. Omit the toxic cleansers and pesticides in your home and ask that your family support this also. Above all, take time to take care of yourself, as often women who have battled cancer have been everything to everyone, and now it is time to take care of YOU. Put down that vacuum and pick up a cup of green tea and a good book….you deserve it and need it. Get a massage, acupuncture, do yoga, relax and feel your body heal and stay healthy.

People transitioning from cancer patient to survivor need programs that speak to their physical, emotional, spiritual and social needs. I took advantage of counseling, rehabilatative exercise, support groups and stress reduction classes. Interestingly, survivors don't always know what programs they need because the transition is so overwhelming. That's why access to a patient navigator is crucial to their success. I know from my own experience how important my navigator was to my healing.

I agree with Gwen.I believe in fighting and healing (not the same as curing)cancer from within. The power of the mind is enormous and can be used:
To find the inner strength
Stimulate your immune system
Alleviate physical and, most importantly, emotional pain
Learn to cope with fear, anxiety and stress
Learn how to fix energy drains and create energy
Learn how to create happiness and fulfillment

In summary,cancer survivors can build the life they want. It takes learning the tools that work, implementing them in your life and having support to make it a "new" way of life. My approach to my plan was through a mind-body perspective. I firmly believe that while my medical team cured me of my disease, it was and is my job to heal myself. This means that I have had to explore all of the circumstances - emotional, spiritual, and physical - that helped to create an environment in my body welcoming to my cancer. I put together a team of professionals, under my direction, to assist me. This included my therapist, yoga teacher, personal trainer, and massage therapist. In addition, I completely changed the way I eat and think about food. I have lost over 30 pounds in the process. I take much better care of myself now than I did before cancer, and I think I am in the best health and state of fitness I have ever been. I think everyone's journey will be different, and they will require individual plans that are responsive to their history, background, and life circumstances.