Thursday, April 28, 2011

Triple-Negative Breast Cancer: Fear of Recurrence


Living Beyond Breast Cancer and the Triple-Negative Breast Cancer Foundation sponsored an excellent teleconference Tuesday April 26, 2011 on fear of recurrence—the first of its kind, and badly needed. They will ultimately post a transcript and podcast.
The presenter was Hester Hill Schnipper, LICSW, BCD, OSW-C,
chief, Oncology Social Work, Beth Israel Deaconess Medical Center.
Adjunct Professor, Simmons College School of Social Work
. She is author of Woman to Woman: A Handbook for Women Newly Diagnosed with Breast Cancer and After Breast Cancer: A Common-Sense Guide to Life After Treatment.
More important, she has dealt with two bouts of breast cancer, both hormone positive.
My notes from the conference.
•Women after any kind of breast cancer are scared. Women treated with TNBC often have triple worries. How much worse is it? How do statistics play our? How much should I worry?
• Statistics are pretty meaningless for any one woman—they have to do with a large group of women. How a disease affects an individual is an individual thing.
• It is important to live as though cancer is not going to return.
• Worries can be worse if feel we do not have any safety net, as women with ER+ have with hormonal therapy.
• With TNBC, the risk of recurrence is worst for first five years.
• Local recurrence—in the breast—is more easily treatable that if disease has spread throughout the body.
• Women are often asked by friends, “Are you cured?” We cannot answer that.
• After five years, the recurrence risk significantly lower. Women with ER+ have much later recurrences. The treatment is being lengthened for ER+ to 10, even 15 years.
• Women with TNBC don’t need to own that particular worry.
• Dealing with cancer afterward is the hard part. Treatment is so arduous, so draining, we are focused just on getting through. We don’t have the energy to deal with emotional issues.
• Many women are dealing with abandonment issues—caregivers no longer there. Lose their support system, no longer have immediate or daily access. Easy to feel abandoned by the caregivers they saw so often during treatment.
• We face elation mixed with anxiety. Others think, hooray, let’s have a big party. We think, what have I been through, what happened to me?
• Even with lumpectomy, the breast looks different--burned, sore, not the breast we remember having.
• Many have gained weight—five, ten pounds.
• We have a bald head.
• Most women feel comfortable going out without something on their head three months after treatment ends. That means almost nine months without hair.
• Plan for at least as long as duration of your treatment to feel well emotionally and physically. We usually expect to feel better quicker.
* It is generally an upward curve, but you’ll have days when you feel very tired, or very scared, or very sad about what happened.
• A lot of us feel precariously balanced somewhere between health and illness.
• Cancer forces us to step out of our routine. Forces us to think about our lives. Gives us the chance to make changes. Some choose not to. We are likely to think differently, to pay more attention to relationships.
• We don’t feel like our old selves. And most friends don’t get it.
* It is best to stagger follow up appointments with medical oncologist, surgeon, and radiation oncologist, although the temptation is to make all appointments on same day. Know your self, know whether would prefer to stay away from doctor.
• What about primary care physician? If have other problems, what about those specialists, those issues?
• During treatment, your medical oncologist acts like primary care physician. Once done, it’s not clear who to call.
• Plenty of women prefer to call their primary care physicians with concerns. Others call oncologist—big fear, and want to hear immediately if there is something wrong. Studies indicate that women followed by primary care physician do just as well as those followed by oncologist.
• Follow the two-week rule—if something has been bothering you for less than two weeks, wait to call. (Cough, sore back, generally not feeling well.) Give it two weeks, most things go away. If not sleeping well, don’t wait. Meant to be reassuring—most things can wait.
• 30 years ago there was a great deal more follow-up. Chest x-ray, blood markers. Now, unless woman is in a clinical trial, or worried, most doctors don’t follow with scans or xrays.
• Blood tests or markers: A couple of markers indicate cancer activity. Not really accurate. Helpful for stage IV, to see if treatment working.
• ASCO recommends against blood tests—they’re not accurate and don’t make any difference in how well you do. If recurrence is discovered in august with symptoms, you will do just as well as woman whose cancer is discovered in February with a blood test. It does make a difference in anxiety limit. Known women with elevated markers, but no sign of cancer. Anxiety increased. (TNBC, though, can grow quickly, so those with especially aggressive cancer may benefit from earlier detection.)
* Lifestyle modifications—particularly important with TNBC. No pill to take. Some attention to diet, exercise, weight and alcohol may make a difference.
• Diet and weight work together.
• Higher weight connected to first cancer and recurrence.
• This is really hard. Many of us gained weight, many dealing with chemopause. Harder to lose weight. Exercise is important—for mental health, and will tone up the body you have. "I go to the gym almost every morning. I hate it there. But I am dedicated to doing all I can to reduce recurrence and make myself look better."
• A lot out there published about diet, but we still do not know much. A diet to reduce cancer risk is not different than what we know about diet in general.
• What we know increasingly about alcohol—more than one drink a day increases risk. "In the interest in being honest, I have a glass of wine at dinner almost every night. If my cancer came back, I am not going to believe it is because of my wine."
• Moderation in all things. Quality of life is important. Know what enhances our joy in life.
• Do not worry about the impact of stress. It does not influence recurrence, no matter what anybody says. Not going to make your cancer come back.
• It is normal to feel sadness that this has happened, that this has brought concern and worry to those you love.
* Anxiety—that it will it come back: Who will take care of my children.
• Exhaustion—many women stay tired for a long time. And being tired makes us more susceptible to worry.
• Sense of isolation. Consider chat rooms, conferences, retreats. No matter how much others (without cancer) try, they do not understand. Most difficult for young women who are worries about whether they will raise their kids and friends who are thinking of what new car to buy.
• Women fall into two camps—I survived it and am OK. Or, one bad thing happened, what else can happen?
•Inevitably, we lose some friends along the way, but develop new and close newfriends. Difficult if close friend or family member vanished through this. You may decide not worth the time and energy to revive that relationship.
• You may feel crazy—it is inevitable, around time of diagnosis, and after.
Depression vs. anxiety vs. fear
All of us fell depressed. Not all clinical depressed. Comes with the territory.
Courage is like a muscle—you have to use it to make it stronger. Courage is fear that has said its prayers.
Things to help with fear—be as specific as possible. What are you afraid of:Afraid of dying? Afraid of being dead? The dying process? Of pain? Of losing things that make up the pleasures of our day. Doctors have made an enormous improvement in pain control. Trade off—pain drugs make you sleepy. Ask your doctor—what would you do for me if I had unbearable pain?
We may be fearful of being a burden. Find out what kinds of care available. How would family members assist you? What can you set up to make it easier for spouse and family?
Biggest fear is leaving children."In 1993, when I was diagnosed with my first cancer, I was a single mom with 11 yr old with no relationship with her father. I was wracked with fear." Made legal arrangements, talked with people who would care for her and love her. Made me feel better.
•Sadness—it is worth being sad about. Just because feel sad—fearful, moody, short tempered does not mean you are clinically depressed.
• Post traumatic stress disorder. What it might feel like after cancer— angry outbursts, think too much about your crisis. Helps to talk about it, normalize it.
• Two week rule helpful—if have half days and hours, then other days when you feel OK, you’re probably not clinically depressed. Many of symptoms of depression—changes in sleep, appetite, social relationship, abiity to concentrate—are the symptoms of going through cancer treatment. Am I really depressed? Do I need help? Give it some time, if after a few weeks you usually will feel somewhat better.
• If feelings persist and you don’t feel like you are getting better, you may need help. If you feel angry or out of control. Like you’re covered with a heavy, wet, foggy blanket and you feel like you have to push it away.
• Medication can help, conversations also help.
• If you wonder if you need help, you might need it. Find a good therapist who knows something about breast cancer—you want somebody who knows about it and understands—you don’t want to have to educate your therapist. Therapists are people—don’t want one who is scared to death about cancer. if calling around, asking about insurance, opening, etc. Ask what is your experience working with women with BC. Not, but willing to do it. Probably not best.
• Live as though the cancer will never return. Living any other way means cancer is the victor. 

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

7 comments:

Kim said...

Pat,
Thanks so much for this post. I can't wait for the transcript. What timing? Most days my fear is held at bay, but the last few weeks the fear is so real. I actaully almost sent you a private email last evening. I think it is because I haven't been feeling well these last few weeks. Interestingly I did some research on late-effects from cancer treatment and fatigue/pain is under documented. Thanks again for all you do!

Patricia Prijatel said...

Kim: I do not think we are warned enough about the fatigue. I was so tired for soooooooo long. I am glad I finally have my energy back. I hope you're feeling better--I'm here to chat whenever you want. Take care. Pat

michelle said...

Hello Pat!
I can not tell you enough how much I love love love your posts!! I look forward to reading them and reading up on TNBC! I was dx in april of 2010 and although still tired from treatment doing very well! you inspire me and give me so much hope!! thanks for all you do Pat..you are such a blessing.

michelle said...

Hello Pat!! I can not tell you how much I love reading your posts! Since being dx last April 2010..I have learned so much about TNBC! your posts give me HOPE and inspire me. thanks again for all you do...:)

rbrown080@comcast.net said...

So glad I found this blog. Wish I had had this kind of support in 2005 when I got my diognosis - TNBC stage 3. Had chemo, then breast removal then 6 weeks of radiation. I am looking forward to celebrating my 80th birthday on March 1st! I had breast cancer (estrogen receptive) age 33 and survived to raise my 5 children. Never give up hope.

Carolyn H said...

Thank you very much for this - I was treated for triple negative last year. Treatment (chemo and radiotherapy) finished in November 2011. It's now August 2012 and I'm having to take two weeks off work due to exhaustion. I worked through treatment and flung myself into 'normal' work and trips abroad in January, now I'm knackered!! As I am sooooo tired I have been getting anxious about recurrence as I have aches in the treated area. Mind you, I have aches everywhere. It's such a tough one - what is a sign of recurrence and what is normal after treatment. I just don't know.
Anyway, thanks again for this post - it has been very useful!

mae said...

Thank you so much. I am a survivor or TNBC. I was diagnosed in feb 2011. I did 8 rounds of chemo and had a double masectomy with immmediate reconstruction afterwards. I was high grade tumor in stage 2. I was nervous at first about being triple negative because the chances of reoccurring but I will deal with that if happens. I have nueropathy in fingers, leg and feet. Sometimes they throb and burn. I still get very tired and fatigued. If I get upset or overtax my body, it takes me a day or two to bounce back. I pray everyday it does not return. I have a nodule on my back, but family physican says it is not a normal cancer spot, so we will keep an eye on it.