
- With Mayo Clinic nurse educator
Sheryl M. Ness, R.N.
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Sheryl M. Ness, R.N.
Sheryl M. Ness
Sheryl Ness, R.N., O.C.N., is a nurse educator for the Cancer Education Program at Mayo Clinic in Rochester, Minn. She helps inform patients, families and caregivers about services and resources to help them through the cancer journey.
She has a master's degree in nursing from Augsburg College. In addition, she is an assistant professor of oncology at the College of Medicine, Mayo Clinic, and is certified as a specialist in oncology nursing. Sheryl has worked for more than 20 years at Mayo Clinic as an educator. She has a keen interest in the importance of the quality of life and concerns of people living with cancer.
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Living with cancer blog
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Sept. 23, 2011
Fear of cancer recurrence is normal
By Sheryl M. Ness, R.N.
Fear of recurrence is one of the most commonly reported concerns for cancer survivors.
This may be a long term worry that is present many years after your original diagnosis and treatment. As a cancer survivor, you know that this feeling isn't something you can easily put aside and ignore.
So, how do you move forward, let go of the fear and live your life to the fullest? Everyone deals with their fears in different ways. You may feel a sense of loss of control, or fear of the unknown, or that your future isn't what you had hoped it would be. Here are a few ideas to consider as you think about fear of recurrence...
- What guides you? Is it your faith, knowledge, a connection to others?
- How can you trust your body again?
- What might help you to let go of the fear and trust that life will unfold for you?
Let's talk about these three questions. As a survivor, you may gain a better sense of faith in yourself by reconnecting with your spiritual side. This could be a religious faith or a way to connect with your own spirituality (such as art, music, or meditation). If you seek knowledge, why not join others who have had similar experiences through a virtual or in person network or support group.
Trusting in your body might mean that you plan scheduled check-in times with your primary care team, including screening exams as well as listening to your body when you notice any changes different from your norm. You might also decide to make positive changes in health habits, such as eating healthy, adding exercise to your routine or exploring stress management strategies.
Keep in mind that your feelings are normal. Recognize them as real fears and find healthy ways to move through and beyond them so that you can enjoy each day to the fullest. Please help each other by sharing your thoughts on this topic. You aren't alone.
70 comments posted
November 29, 2012 11:37 a.m.
I was diagnosed with multiple myeloma in September of 2009 and began treatment at Mayo Clinic the end of October. I reached near complete remission by New Year's Eve. Did a stem cell transplant in 2010 and all cancer was gone! Doctor said that with Revlimid I would maintain for at least 2 years. I relapsed within 12 weeks. I began a stronger maintenance treatment including Velcade and Dexamethasone on a 4-week cycle. By the Grace of God, prayer, good doctors, good medicine I am here today. I am weary of the treatment regimen, but thank God for every day I am given. I can travel within the US and enjoy my children and grandchildren. I lost my husband to prostate cancer 6 years ago, so I know life is precious. I know the myeloma will return and that the bus is waiting. My attitude makes all the difference and some days are hard. This cancer journey has connected me to many wonderful people and we help one another. Be blessed. We are cancer survivors and fighters. Never ever give up!
- Marcia
October 20, 2012 9:12 p.m.
I was diagnosed with stage 4 head and neck cancer in Dec. of 2010. I had cancer in my tonsil, tongue, and lymph nodes. I underwent 39 radiation treatments and 9 or 10 chemo sessions. I have no salivary glands, chemo brain, loss of appetite, thyroid stopped working, unable to eat hot or spicy foods and etc. I have been told it will probably come back as lung cancer. But i say, God knows more than doctors do. I am here now by His grace. I fear recurrence, but try to stay positive. I have no one to talk to so i appreciate this website. I pray for all of you.
- Lori
July 9, 2012 9:19 a.m.
I was diagnosed with lung cancer in October 2010 - by accident! Had a chest Xray to check placement of a PIC line (I had a bad ear infection) and the radiologist saw this spot. Had middle lobe of lung removed and doctors said no other involvement and thought I was "good to go live my life." 6 months later when I had my follow up CT, they found a positive lymph node. 4 months of chemo and 37 radiations treatments later, I was deemed cancer free. You guessed it, 6 months later, a sore shoulder determined a lesion in my scapula! No I'm a stage 4 having radiation treatments. a couple weeks in to that, they deeded I needed a follow up MRI of my brain. There as a tiny (5mm) spot on my cerebellum. I immediately had a Gamma Knife procedure which everyone feels went well and no other spots were found, thank God! I have 5 more radiation treatments for my shoulder. All this and never smoked or had any symptoms, except for the sore shoulder!! Talk about terrified of recurrences!! My faith is being tested like never before. I spend a lot of time in prayer as do all my friends and church. I don't know what I'd do without them. I'm headed to Duke today to talk to them about treatments options. Where else is good for lung cancer. All I ever see is so doom and gloom. I'm realistic, but I need to be positive, not weighted down by so much negativity. My youngest is getting married next summer and I plan to be there!!! I just don't see many lung cancer patients shari
- Julie
June 29, 2012 3:45 a.m.
7 yrs post breast cancer chemo, radio and Tamoxefin. and finding all the above to be true. Being an exercise instructor has given me an insight into the importance of physical activity. There is now a Pink Ribbon Exercise, a pilates based programme for rehabilitation which I would recommend. Look up their website for a national register of instructors in your area or contact the National Osteoporosis Society for information on physical activity.
- Robbie
May 10, 2012 7:30 p.m.
First, I consider myself very lucky. I was diagnosed in 1995 with a rare form of chronic leukemia. It's not a question of if I will relapse but a matter of when. It's a slow mover when I do relapse. I say I'm lucky because its not acute and they say "it's treatable". But the facts are everytime they treat me when I relapse, parts of my body don't recover from the harsh chemo..Parts of my immune system have been compromised etc. Now, the good news is there are many new discoveries like the pill that blocks the mutant gene for melanoma.. and more. Yes we have cancer and know one really understand what it is to walk into a place to have chemo pumped into us knowing the side efeects. A n 8 year survivor with Oat cell lung cancer told me when we were getting chemo together that she would let them give her chemo until she said stop. She would build herself backup and start it again. She was in control and was the most wonderful optimistic person I have ever met. I'm lucky I have the kind leukemia I have. Except for the discrimination by the insurance companies I'm stronger for it. I can live with it until it kills me or one of it's side effects. Keep as positive an attitude as you can.. Enjoy being around the ones you love...
- Jeff
May 4, 2012 6:20 a.m.
I had Stage IV ovarian cancer. Healthy all of my life up until the last few years when this cancer came about. I beat it once, then it came back and I had to beat it the second time. I am a fighter, have a strong positive attitude and lots of support. I now take each day as it comes and am thankful every day I wake up. The "Big C" has in a crazy way, encouraged me to enjoy my life more on the good days and appreciate every moment with my family and friends. Not that I ever wanted to have cancer... but each day of life is more precious. I am hoping to make it six months cancer free this month. One day at a time!
- Deb
April 25, 2012 6:42 p.m.
(continued) She had already determined that she wasn’t willing to undergo the treatment that was being suggested. We continued to go around the room but there was a stillness that was palpable, realizing that there were two women in our little group that were approaching the end of the line. When I shared with my daughter that I was almost in tears on the trip home and actually felt worse for these other women than I did for myself, her response was “Just don’t go when you’re in a really good mood.” But the truth is, I’m blessed to be in remission and able to have a really good day and will continue to attend these support group meetings, even on days when my mood’s not so great. If these women can show up, it’s the very least I can do.
- Sheila
April 25, 2012 6:40 p.m.
Today marks 18 months since surgery and a diagnosis of stage 3C ovarian cancer. I’ll be 70 years old next month and I’ve always been someone who never got sick, not even flu or a cold. So this completely overwhelmed me and I’m only now coming to terms with what has happened to me. Last Thursday, I was in an exceptionally good mood as I headed out to my cancer support group meeting. Spring had finally arrived and I was enjoying the short drive with windows down and a great CD playing. When I arrived, there were a few new women and a couple regulars, both with stage 4 melanoma. As we began introductions, the first woman to speak (one of the regulars) told how her tests came back clear after undergoing the knife procedure on tumors in her lung. The next woman to speak was new to the group and obviously very distraught. She was diagnosed with stage 1 breast cancer in 2008; she had 33 doses of radiation. The cancer returned as stage 3 last year; she again had 33 doses of radiation and chemotherapy. At the beginning of this year, the cancer was back and now stage 4; she was getting ready to go to Utah and meet with doctors who would help decide the next step for her. Throughout, it was everything she could do to hold back her tears. The next woman to speak was the other regular with melanoma; although she had been on the same medication as the first woman, treatment wasn’t working for her and she was leaving for San Francisco to meet with doctors the next day. She had already deter
- Sheila
April 13, 2012 9:09 p.m.
I have Esophageal cancer anf finished Chemo and Radiation 10 weeks ago. I have just had a PET scan and an endoscapy the doctors have found it to be in remission. Our only son died 5 years ago at age 23 we were devistated and with thecancer we are both scared. I worry a lot about it as my wife has gone through so much and now I am putting her through more. Iknow I need to stay positive but it is hard. I don't want to leave her all alone. We try to live each day to the fullest but it hard when to feel so lousy.
- Bill
April 12, 2012 10:36 a.m.
My thoughts and fears echo so many of all of yours. Not a day goes by that I don't think about recurrence. My work, my family, and my faith keep me going. I have found that singing in the choir and playing handbells eally clears the brain of all other thoughts - can't think about cancer when you're trying to sing or play the handbells! Every day I wear a silver necklace with interlocked hearts that my daughter gave me when I was diagnosed. It is my daily reminder and prayer for continued good health.
- Siri
April 12, 2012 10:34 a.m.
My thoughts and fears echo so many of all of yours. Not a day goes by that I don't think about recurrence. My work, my family, and my faith keep me going. I have found that singing in the choir and playing handbells eally clears the brain of all other thoughts - can't think about cancer when you're trying to sing or play the handbells! Every day I wear a silver necklace with interlocked hearts that my daughter gave me when I was diagnosed. It is my daily reminder and prayer for continued good health.
- Siri
April 11, 2012 11:27 p.m.
I had my check- up on the 10th. Thank you God. My Ca 125 was 8 and now can I rest for another 6 month. I have 3 more years to go for checkups every 6 month. Just going to enjoy every day and appreciate life with my family and friends.M
- Mona
April 5, 2012 11:23 p.m.
I have now been free of cancer for 3 years. I like to tell people I am free from cancer instead of in remission. I had stage 3C ovarian cancer and are going back to the doc. on the 10th of April. Hope to still get a good report but of course the fear is always there. I try to stay busy. My husband, children and grandchildren have been very supportive and keep me going. I try to rest on bad days and read, watch lot of TV, get on my I-pad, cook etc. Otherwise I am busy running around doing errands, shopping and babysitting grandkids. Life is good but the fear of the cancer returning is always there. I am 69 year old and when I feel bad I always think it could be just old age. So I still thank God every day for all the blessings around me and I will keep smiling.
- Mona
March 29, 2012 12:10 p.m.
I am a cancer survivor of a very rare form of lung cancer (bronchiolo-alveolar carcinoma. I was diagnosed in October of 2010. I had no symptoms and a routine chest x-ray found a 3mm shadow.PET scan showed nothing lit up like they expected it to.My type of cancer doesn't usually show up on PET scans they told me. (wonderful)In November 1/3 of my lung was removed (couldn't remove the entire lung because it wouldn't deflate completely) and I was referred to Dana Farber in Boston. Chemo was started in December through April of 2011. My last CT scan showed all cells completely gone and I am so grateful. I have a continuous cough, my mind is NOT as sharp as it use to be, I am almost always depressed (hide it well from family)I am constantly achy and just feel like crap most days. I am prettified that this cancer will come back or that I have cancer somewhere else. I have diabetes and a fatty liver. Family and friends don't know how much the fear is so real, they just tell me I'm so lucky and I should be thankful. Well I am, but....... Just being able to type this helps a little knowing that there are many of you reading this and bobbing your heads up and down and saying yes I know. I did the same thing when I read all of yours.I need a support group for survivors.Where do I (we) go from here?I am a very positive person usually but this has knocked me down pretty hard.My faith has been knocked down a bit but it's still there somewhere, I just know it.
- Eva
March 5, 2012 3:51 p.m.
I have reoccurence breast and I want to know why it came back after ten years.
- Vera
January 20, 2012 5:55 a.m.
Good attitude, Jeff! My husband Joe also has lingering side effects from chemo and also bowel issues from surgery and radiation from Rectal ca. Good days are a treasure to draw on in the bad ones.
- Alayne
January 19, 2012 2:39 p.m.
I have a rare form of Chronic Leukemia.. It's not a question of if I relapse, it's a question of when. Why I will relapse is unknown. Have been doing it for 16 years. Had 12 treatments of chemo over 7 months the first time . One contiuous chemo for 7 days 24/7 another time. Possibly beginning of a relapse at this time. Hope not. Have had side effects from the chemo that have never gone away.( despite the insurance comp. & drug comp. montra of, it leaves your system, no side effects.. Ha. Ha.) Except for my fear of financial failure( which has caught up with me) and lack of being able to get a job in my profession due to corporate discrimination because they fear my future medical costs, I try to keep busy doing things and live mentally one day at a time. My wonderful wife of 35 years taught me this when I was first diagnosed. It is what it is. It's not personnal.. We all have something. When you are having a good day, you will appreciate it much more then the people who have never had a bad day with cancer. I am stronger and better for the trials I have endured and will endure. Try to apprecite the good moments and be gratful when those bad days have passed. Wish I could give you the answer to make it better. I hope this helps at least alittle. May you all go into remission quickly..
- Jeff
January 18, 2012 12:02 p.m.
Way to go, Arlene. Now you have a purpose for living!! Good luck with Jasper. Just to mention, my husband of 49 years(Anniversary) was the one diagnosed with Ca. Stage III Rectal on his initial colonoscopy. Believe me when I say God IS good!! As his caregiver, I also think about recurrence. He had radiation & chemo, followed by surgery and more chemo. If his next cat scan is good he will be able to have the port cath removed. To all the other survivors on this blog, keep the faith & keep fighting!!!!
- Alayne
November 10, 2011 2:12 a.m.
I HAVE KIDNEY CANCER. LEFT KIDNEY WITH ADRENAL WAS REMOVED IN 2008.IT HAS METASTASIS IN ADRENAL(RIGHT) THERE WERE NUMBER OF OTHERS. I WAS PUT ON ORAL CHEMOTHERAPY IN 2011 JAN. ALL TUMOURS EXCEPT ONE IN ADRENAL HAVE BEEN DESTYOED. BUT IT IS BIG AND VERY COMPLICATED. DOCTORS(UROLOGISTS) DONOT RECOMMEND OPERATION.ANY ADVICE WHAT SHOULD I DO.
- SAROJ(ROSE)
October 14, 2011 11:18 a.m.
I so appreciate this blog. I have experienced such anxiety about recurrence! I think it is a fear that can only be understood by someone that has actually already received the news that you (yes you)have cancer. People want to hear you're doing well, that you are "fighting". Sometimes we are! Other times we are anxious, alone and tired. It feels good to be able to just say that.
- Nancy
October 13, 2011 3:06 p.m.
I had stage two, grade three invasive breast cancer in 2010. I was allergic to chemo and developed organizing pneumonia from which I now have permanent lung damage and am still suffering. If you cough or feel like passing out while undergoing chemo, please insist on further testing before continuing the chemo.
- Mary
October 12, 2011 12:59 p.m.
I have Stage III lung cancer. Had chemo, and 28 days of rad. last yr. Cyberknife the end of July this year 2011, because doctor and radiologist stated tumor appeared looked not as cavitated. I just know I asked my doctor if she was me would she do it and she said yes so I did. Since this treatment I've had chest pain from fidicuals placed around my tumor as well cough, spitting up mucus, most of the times plan, waking up from coughing, have to set up sometimes through the night it has been 2 1/2 months. I get PET scan in mid Nov. I like to read about everyones faith and at this second I pray for your healing. Pray me for me as well please. I thank God each day to be alive and know I'm so much luckier then many other people. Thanks for letting me talk. At least I'm told I look better then before. I told a friend of mine that 3 yrs. ago and she died thereafter. It haunts me, she was sweet and had two teenagers. I feel like doctors are tired of me already! In the beginning I felt more empathy from the nurses and team. I don't call or complain to them but I do ask a lot of questions when I go for my visits. Maybe I'm a pest! I think I've ran out of treatment if it's not gone. Not sure I want more. Feel worse after treatments.
- Linda
October 9, 2011 5:57 p.m.
In November of 2007, I was diagnosied with ovarian cancer 3B. I felt positive during and after chemo. I have had a lot of pain during and after chemo. I was in remission until recently. I cannot have chemo because the cells are too small. It is now a "wait and see" situation. This time I feel fear and I am worried that I won't be so lucky. Most important, I will not give up. I do not want to die and will not give in. I Love my Grandkids and Son and Daughter with all the Love a Mother can give. They are my life. I have a lot of faith in God. I know he will be there for me all of the way. I don't want to waste a day of my life wondering if I am going to be sick. I thank God everyday because he gave me another day. I try to pay it forward with other people and do things for them that are unexpected. It makes me feel good to reach out to someone else. Having cancer made me appreciate life more and not take it for granted. My advice to everyone on this page would be to try not let your illiness control your life.I hope and pray that someday we can destroy this terrible disease.
- Arlene
October 6, 2011 8:21 a.m.
I was 62.....Looked great....Felt some tummy pain in my oh-so distended belly. Never being sick, I thought it was some kind of gastro thingy. Guess what.....it turned out to be level 3C Ovarian cancer. Doc. totally gutted me. I was 99% cancer free....except for the cels...Those little buggers. Went thru Chemo and was cancer free for 1 year....till last month. The cancer cells came back, so, I'm back on Chemo. After my first session, I am again cancer free. When I refer to Chemo, I say "The enemy of my enemy is my friend". No nausea. Imagine that. I still feel and look great, except for my hair (there lack of) But with my black hat and ear cuff, I'm still striking. I have a real positive attitude, which really helps me get thru. I am hopeful that these cells will someday die (before I do) L0L. Gotta think positive. I decided to rescue a 10 week old Lab mix puppy, that was going to be gassed in Alabama. I HAVE THE WILL AND STRENGTH TO LIVE... Now puppy.Jasper is my PURPOSE !!!!!!!!! Love to all reading my thoughts. Ar
- Arlene
October 5, 2011 11:48 p.m.
I was a 37 years stomach cancer survivor. Yes, one never gets free of cancer. Sept. 2010, I was diagnosed with cancer of the gallbladder - a rare cancer. I went through treatment of chemo and radiation therapy. My treatment was successful but most recently this week, my Oncologist, found a mass right below my incision on the right side of my abdomen. Again I went through another Pet Scan - it showed that the area I mentioned above lit up. So now I have to probably go through a biopsy. I will know after tomorrow, Thursday, after my case is presented to the Tumor Board on what they would recommend for my treatment. I went through a very difficult time during my hospitalization in Sept-October and November. But by the grace of God, I pulled through the most critical times of my illness. I know and believe that prayers work. Even now I firmly believe that the Jesus will pull me through this time b/c He promised: " Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in Heaven. For where two or three are gathered in my Name, there AM I in the midst of them." _ Matthew 18:19-20. God is in control of my life. I totally surrender my whole being to Him. God's divine mercy calls us to trust in Jesus. The love and prayer support of my family and friends sustained through it all. May the healing grace of God with the guidance and protection of the Holy Spirit be with you all.
- Adia
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70 comments posted