
- 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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Dec. 15, 2012
Watch and wait cancers — monitoring has benefits
By Sheryl M. Ness, R.N.
Watchful waiting, active monitoring and surveillance are words to describe a monitoring strategy used for types of lymphomas and cancers.
If a cancer is discovered that's slow growing, as can be the case with some lymphomas as well as prostate cancer, many times active treatment is not the first recommendation.
When the doctor says you have cancer and the best thing to do is to watch and wait — instead of describing an active treatment plan, such as surgery, chemotherapy or radiation, it can bring on feelings of anxiety.
We're so used to the idea that cancer needs to be treated — as soon as it's discovered — that it seems strange to just watch for something to happen. However, in some cases, ongoing monitoring is the best strategy.
Even though it may seem contrary to what we might think, active monitoring can have good benefits. If a cancer is slow growing, it may be best to wait until the cancer is at a stage where treatment would be more effective. Or, it may be that the cancer is monitored and never needs active treatment — such as in slow growing prostate cancer.
You may want to also consider these active steps if you are in a watch and wait situation:
- Be physically active — get in aerobic exercise at least 3 days each week
- Eat healthy foods — leafy greens, fish, lean meats, fruits and vegetables
- Reduce stress levels — incorporate yoga or meditation
- Be aware of any changes in your body — report any new symptoms to your doctor
- Get your blood tests and scans on schedule — outline your monitoring plan together with your doctor
- Understand next steps if active treatment is necessary — being well informed will help with your sense of control over the situation
Watchful waiting should be considered an active strategy, as close monitoring can give you reassurance that your cancer is stable, and not aggressively growing. If a cancer is found to be progressing during the monitoring stage — then additional treatment strategies can be started.
Follow me on Twitter at @SherylNess1. Join the discussion at #livingwithcancer.
30 comments posted
March 20, 2013 12:05 p.m.
A little over a year.. trying to figure out what do do(partly because of the doctor's speciality and because the once a month injection did not work it made my diarrhea worst so I stopped taking it which a eliminate the diarrhea but what about the growth of tumors that are creeping around inside. I am not at all happy with living one day at a time. Don't have much choice now I have been put out to pasture so to speak. I really do wish they never did surgery and pass me along from one friend to another...We really need to find a way to educate the on the ins and outs of what to do once they are diagnosed with any kind of diseased. In my case, it was surgery first instead of an oncologist to explain and give me options. After the fact for anyone is unacceptable.
- Elizabeth
March 20, 2013 11:26 a.m.
I was diagnosed with carcinoid tumors in October 2010. I had a CAT done. The test showed a tumor on my lower intestine which mastitis to the right lobe of my liver. Biopsy confirmed carcinoid tumor. My Prime Doc said you have a rare type of cancer but you are lucky because they grow slowly. He passed me on to a local surgeon who wouldn't touch me with a ten foot pole and advised me not to let any one else in town do surgery. He passed me on to a friend Birmingham AL who does surgeries, who told me he didn't do liver surgeries and passed me on to another surgeon. This next surgeon did liver transplants. Said he wanted to do surgery the Thursday after Thanksgiving.(This was Monday before Thanksgiving). I wanted to wait until after the first of the year being it was slow growing. No 's. Wilson you have Cancer. We will do surgery the first Thursday after Thanksgiving. One of sons was with me so there was no turning. It turns out that there were two tumors on my small intestine,two in my liver which built up and penetrated my diaphragm. Then there were multiple in the omentum. Surgery should have never been done (unless it is an isolated tumor surgery is not recommended). Then this surgery sent me one of his oncologist friends where I live. After several several visits with him it turns out his speciality is breast cancer. A little over a year.. trying to figure out what do do(partly because of the doctor's speciality and because the once a month injection did not n
- Elizabeth
March 18, 2013 10:33 a.m.
Hi Diane! I also have Lynch Syndrome and was diagnosed with Stage 2A colon cancer in June 2012. They are just watching and monitoring as they feel that chemo does not help with Stage 2 cancers in people with Lynch Syndrome. I am also struggling to find others with Lynch Syndrome to talk to. I would like to get in touch with you. I go to Huntsman Cancer Institute and I have had a difficult time finding anyone with Lynch Syndrome to talk with and what directions to take as far as support or support groups. I would love to talk to others with Lynch Syndrome and know that it is rare in that only 2-5% with colon cancer have this genetic condition.
- Karon
February 14, 2013 5:24 p.m.
I don't know which blog to join. I have "Lynch Syndrome." That means I can (not necessarily WILL) develop about 10 different types of cancers. I've already had 4 cancers; it's been almost 4 years since my last bout so that does make me somewhat hopeful. Nonetheless I also continue to wonder when will it show up again and will it be Stage 4 with no possibility of remission... My question, anyone else out there who lives with Lynch Syndrome? AJxpfl
- Diane
January 20, 2013 2:42 p.m.
Nancy, Toward the end of your post I noticed that you said that your sister also has CLL and how unusual for siblings to have the same thing. Well, I had asked my doctor, who is highly specialized in cancer, about how common it is for my brother and I to both have a non-Hodgkin Lymphoma. She said it is not. Hereditary thing, but it really makes me wonder. What are the odds? Granted, he got his at 19 and needed treatment immediately, where as I have Mantle cell (originally diagnosed as CLL) and was diagnosed at 38. I am still at stage zero, (watch and wait, no other symptoms except for WBC). Plus, my father died of brain cancer. You can't tell me that there isn't a biological connection. There has to be.
- Debbie
January 12, 2013 12:27 a.m.
Hello, My mom has been diagnosed with colon cancer and blocked intestines. The Drs have sent her home under hospice care. They said that she could have less than a week left, but It has been almost a month since then. At the time she was diagnosed, she was throwing up a lot without any bowel movements/sounds. At this point we have seen a lot of changes. She has stopped trhowing up, she's tolerating more liquids/nutrition down in her stomach. We put a suppository over a week ago since she felt like passing gas and having a bowel movement. At first it was very painful for her to go, but now she is having less trouble going. She is having BM several times a day. The few first days her stool was black, but now it is getting dark brown. We have asked hospice to try some IV's, but they don't seem to approve it. We would like to know if these are signs of improvement and if we can take her back to the hospital. She still feels weak and feels like sleeping a lot. We believe that if she gets more nutrients, she wouldn't be that weak.. Thank you!
- Karina
January 11, 2013 1:59 p.m.
As cancers are detected at an earlier stage, we will probably see more patients in a "watch and wait" status. All of your comments are so helpful for us to understand the common emotions that are tied in with this type of monitoring. Anxiety and living with uncertainty are not easy emotions to deal with. However, your insight into this can help. Recognizing that you have these feelings can help you actively seek out ways to deal with the emotions. Chrystal, I love how you reworded this to "smile and wave"...great attitude!
- Sheryl Ness
January 3, 2013 10:31 p.m.
I was Dx with CLL in Sept 2004 at age 65 I am now 73 My white count is elevated in the hi 70,000 It has taken 8 yrs to get there All other blood work is normal.I am on the watch & wait regime My Specialist said that because the tx is only good for a certain period of time it is now prudent not to tx until necessary Not broke don't fix. I get the occasional nite sweat but no other symptoms I too use to worry but the last couple of years I have been more relaxed about it From what I have read the changes will be subtle so just pay attention ie changes in blood work Swollen glands Increase in nite sweats Fever without illness These are all signs that the cancer has changed Other than the blood work all the other signs can be monitored by the patient Be your own best advocate The most important thing I do is avoid people who are obviously ill & those than think they may be coming down with something The hardest thing I have found is to educate the people around me To them it is "just a cold" or "just the flu" Don't be afraid to speak up & ask them to stay away or let you know when they suspect they are coming down with something or have an illness so that you can choose to avoid contact Eventually they get it Well most of them Good luck & keep positive My elder sister was dx 3 yrs ago at age 73 It is apparently unusual to have two people in the same family with CLL We are both in a study as well as our siblings & our children Maybe they
- NANCY
December 30, 2012 6:49 p.m.
The initial diagnosis of CLL can be very distressing. I know! I was diagnosed with CLL in 2007. A couple months after the diagnosis I went to an oncologist specializing in CLL. This helped lower my anxiety a little. At first I thought about it everyday. After living with CLL over 5 years, learning about the cancer, trusting my doctor & the rest of the team my thoughts of CLL are not so distressing. Everything mentioned in this article is so true. Keeping doing what you enjoy doing, as long as it isn't high risk for CLL. I give thanks for my quality care.
- Evie
December 28, 2012 11:23 a.m.
I was diagnosed with CLL after routine blood work for an annual physical in November 2012. I am now waiting to see if I need treatment or will be watchful waiting. Since that day the cancer is the first thing I think of when I get up in the morning and the last thing I think of before going to sleep at night. The waiting for all the test results and Doctors meetings are stressful beyond anything I can describe. I am thankful I am not feeling sick yet but beyond that I am feeling down. I hope the feeling of uncertainty improves soon and I can once again sleep restfully without this awful knot in my stomach all the time.
- Pat
December 28, 2012 9:41 a.m.
I was diagnosed with CLL and small bcell lymphoma 3 years ago. The watch and wait theory took me completely by surprise and I was terrified. How can they just watch....this is cancer..get it out...but it was still watch and wait. I decided to read all the information I could I contacted the Canadian Leukemia Society, Canadian Cancer Society and yes The Mayo Clinic all the information I received fully supports a watch and wait respoinse to my condition. Since diagnosis I was going every 3 months for blood work.....sooo stressful now however since my numbers were not changing I have been switched to every 6 months. I don't think about my cancer until "that time" but I work hard everyday to have a healthy diet, exercise, and control my stress and anxiety levels. I also try and keep the most positive attitude possible when I do think about my cancers, it is not always easy but I do my best. It is what it is and I can't change it so I do what I can that gets me through this. One thing I did do was change it from the clinical name of Watch and Wait(which to me says ...wait for it wait for it ....BAM here it is) I have decided to call this period my Smile and Wave time. Smile cause I am still in control and I won't let this control my life....and Wave because I wave everyday and say thank you for another healthy day. Smile and Wave....try it .....it might help. Best wishes to all of you. Wish me luck I go in 3 days for bloodwork.
- Chrystal
December 26, 2012 11:27 p.m.
I was first diagnosed with NHL in 2000. Had the chemo. Relapse in 2009. Had surgery. Now in the watch and wait mode. I rather like it. Makes me feel normal, and yes, I know cancer could rear its ugly head once again, but it could just as easily not. I am grateful each day to be alive ....attitude is everything
- jackie
December 26, 2012 5:20 p.m.
I feel the cures are out there for cancers, diabetes, etc.... The profit to the medical community and to the pharmaceutical companies is in NOT curing all of these horrible diseases. Our best weapons as cancer patients is to research for ourselves and have as much knowledge of our diseases as we can when we go to our Dr. I keep an ongoing list and will be taking it to my Dr on my next visit. If I don't ask the questions, then I won't get the answers I need to make important decisions concerning my health. Don't be intimidated by your Dr...educate yourself on your issues.
- Shar
December 26, 2012 1:39 p.m.
Diagnosed 9 years ago with prostate cancer after surgery to reduce the prostate (HOLEP). The urologist who did the surgery recommended watchful waiting. My hometown urologist was adamant to remove the prostate. Two docs, total opposite strategy. Sent to Solomon, the chief of urology at a large university sponsored hospital and he recommended watchful waiting. PSA and DRE every 6 months. So far, the correct choice.
- George
December 26, 2012 10:56 a.m.
I was diagnosed with vulvar cancer in April 2012 and in consultation with my gyn-oncologist, we decided to do nothing but watch and wait. I will see my gyn-oncologist again in February, Last time I saw her, nothing much had changed altho the cancer seemed to have grown a little.
- Elsie
December 23, 2012 1:09 a.m.
I hadlower left lobe removed 14 mo. ago have been ok i guess .My fear they say all is well just halft to wait. My whole experence is I felt like they thought I would not make it no one ever got me up out of bed I had to first bath I had to do it first walk I had to do it no one ever talked to me realy talked I mean on the 4th day got to go home, come back one month . I had great dr. they knew what the were doing , I just always have a feeling am able to do small things back and sholders are healed.age 68 my lung cancer was found when I broke 6 ribs from a bush hog. I thing things will be ok Ted
- ted
December 23, 2012 12:04 a.m.
In 2004 I was diagnosed with CLL at the same time I found out that I was expecting my third child. The doctor discovered it because I was extremely exhausted. They told me. That they would watch and wait. I see 2 different oncologists 4 times a year for my sanity. One did further testing on my blood and discovered that I had Mantle cell lymphoma. My brother died of a non-Hodgkin lymphoma at 19, my father a brain tumor at 66. I saw what chemo did to them and I have already decided that if I ever need treatment I will NOT participate in chemo. Too destructive. My father told me not to let the cancer rule my life. It's difficult when going into the drs for a blood drawl and seeing the blood that has betrayed me. I keep wondering when the shoe will drop, if it will. It's scary not knowing if and when, but it is what it is.
- Debbie
December 22, 2012 9:20 a.m.
I don't know how scientific I am being here-but very recently,I came across this book on Acupressure,which asserted that this kind of treatment can detect cancers in its early stages,by merely feeling some pressure points on the palm.
- sanjit
December 22, 2012 8:50 a.m.
Everyone deals with there illness ,cancer, differently. I have a rare slow moving leukemia. Being a Type A personality, my wife taught me when first diagnosed and receiving 12 treatments of a harsh chemo over (7) months that I needed to take a day at a time and not worry about beyond that. I counted down the treatments as , Ok, only 9 left or 8 left.. That was in 1995. I relapsed again in 2008 and started chemo at the same time as having pneumonia. I survived the cure,(chemo), pneumonia, and the disease again. In remission, but the cancer is always there, with the long term side effects from the chemo and or the disease. I will relapse again and I will try an alternative to chemo due to its desructive affects its had om my body. That's Ok. I'm lucky, its chronic, the disease didn't pick me out, it's not personal it just is what it is. It has taught me alot about life and perspective about life. It is a learning experience that is part of my life. I go through the anxiety of checkups, blood work, etc. but have resigned myself over time that it is what it is and I will try to not deal with it when I must to attempt to enjoy as much as I can while I'm able. Take small bites and enjoy the monments when they are good. Try to control your fears with God, religion, loved ones, friends or your pets.We each own our birth, life & death and that's all part of our life. I wish you the ability to enjoy the moment with those you love, care about and care for. Be well..
- Jeff
December 22, 2012 8:22 a.m.
First I would like to wish everyone to have a happy and blessed Christmas as much as you can. Try to put the word Cancer out of mind for a day. It has been hard for me as I do not know if I will be here next year. However, I am going thru the motions and actually enjoying some of it. Now to watchful waiting. My oncologist said that to me and I cringed. It was like a death sentence. I agree better wording could be used. All the watchful waiting did for me was to reveal metasis of my breast cancer four years later. Now I am on oral chemo with no guarantee and no cure just possible remission. In my opinion whatever watchful waiting means needs to be clarified and the tests should be done regularly. I agree with the lady that says it sucks. However, it is too late to have remorse. Perhaps a second opinion should have been sought at that time. I wake each morning now and say to myself "Let us rejoice and be glad in the day the Lord has made" Merry Christmas and Happy New Year with new research discovered to help us all. New discoveries and cures are all miracles given to us from God thru gifts of knowledge to the dedicated researches.
- Anna
December 20, 2012 6:05 p.m.
Six yrs. ago I was told I had a spot on my lung and the dr. wanted to do surgery. I went to a different dr. and we decided to wait to see if anything changed. Went for a CT every couple months and finally a 4 yrs after the fact, I was told that because there was no change in the size that it was not cancer. I still think about it, but am so very glad I took the chance and waited instead of having that drastic surgery.
- Joann
December 20, 2012 5:54 p.m.
I have MDS and am in watch and wait. The anxiety usually hits me a few days before a Dr. appointment. The active steps you give are excellent, they are things that have helped me. I also attend a support group. The Aplastic Anemia & MDS Intl. Foundation sponsors Community of Hope support groups. Talking with others in my situation really helps. To find a Community of Hope check the Foundation's website, aamds.org.
- Linda
December 20, 2012 3:51 p.m.
My husband was told in May 2009 in had CLL ,told to wait & watch since the numbers were so low it may be many months or years until chemo is needed...5 months later he needed chemo and went once a week for 6 weeks..since then we have never gone more than 2 months without blood work...yes his numbers are going up again,and his fatigue has worsen, we know that day will come again. But until it does , we live our lives to the best we can, and appreciate what we do have, each other, our children , family and friends, a positive outlook helps more than my words can say......
- Cat
December 20, 2012 2:21 p.m.
I was diagnosed with Stage 1B non small cell lung cancer on 1-15-08 and was treated with surgical removal of my right lower lobe and 4 sessions of carboplatin and taxol. A second nodule was discovered and removed from my left upper lobe 18 months later. Then the big debate began. The PET scans showed NED re:further spread...was is metastatic or a new lesion???? The pathology came back metastatic. THe redo pathology came back metastatic. However, my second opinion oncologist strongly recommended watchful waiting...keep the second tier of chemo in your back pocket, so to speak. Such a hard decision...you don't feel comfortable not treating, but you so much don't want to go through unnecessary chemo! I chose the watchful waiting after much debate, and tho' each CAT scan/blood test causes anxiety, I am NED still to this day!!!!!
- Sheryl
December 20, 2012 12:29 p.m.
I think they should change it to “Watch and Worry”. I’m coming up on my 2nd anniversary of being diagnosed with CLL. There is nothing worse than going in every 4 months to get my blood checked and seeing my WBC rise each time. It reinforces the fact that my life is going downhill quickly and I’m going to end up on chemo at some point. I rue that day that my doctor found an elevated WBC. I wish he never told me anything and just kept me in the dark till I had some symptoms. Living with this has been Hell.
- Don
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30 comments posted