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How do you feel when it's time for the next scan?
If you're a cancer survivor, you've probably experienced the worry and anxiety that comes along with having a follow-up scan after your treatment is complete. Many of you have mentioned this in our discussions.
Every little symptom may bring thoughts of worry and fear — has the cancer returned? Researchers at Mayo Clinic have studied this aspect of survivorship and found that it can be an issue for most people.
The researchers from Mayo Clinic and other cancer centers studied how people react emotionally during the time just prior to a surveillance scan after treatment has completed.
They found that most survivors report worry and anxiety most intensely during the period just prior to their scan, peak leading up to the scan and then drop off just after the results are known. Some survivors have coined the term "scanitis" related to this worry ... a real concern.
Knowing that this feeling is normal, there are a few things you can try to help yourself through these periods of anxiety. Here are a few ideas I've collected from survivors:
Fear of recurrence, anxiety and depression can be made worse because of frequent scans. Cancer specialists are beginning to look at this and decide if frequent scanning is really the best option for patients who aren't experiencing new or worrisome symptoms.
You may see changes in your follow-up scan schedule because of this — especially if you're doing well and have no symptoms of concern.
I'd love to hear your thoughts on scanitis. What helps you get through this time?
Follow me on Twitter at @SherylNess1. Join the discussion at #livingwithcancer.
Sheryl M. Ness, R.N.
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Join the discussion at #livingwithcancer.
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I'm 4 years past robotic surgery for prostate cancer-gleason 9. The lab I go for psa follow-up allows patients to get results the next day. I love that I don't have to wait for the dr. apptment
and sit while he shuffles papers before I get results. Scanitis is nasty.
During recent CT scans the technician (bless her) told me that she was not allowed to say anything, but she saw no "hot spots". I believe scans and results could be handled better if the patients' anxiety were considered. My doctor is inconsiderate, but otherwise very good and busy, of course.
Many of you are religious and talk to God. Please tell Him I am pissed-off.
This is an interesting topic - I have vaginal cancer and I am scheduled for my x-ray visit in a couple weeks. I am like climbing walls as I have had PET scans the past couple years and thanks to PET my cancer was detected, now they are not doing the PET scans anymore and instead having CT scans done. I'm not comfortable with this at all and I know my peace of mind will be demolished. What makes it worse is vaginal cancer is like only 2-3% of the population and not much written about this type of cancer.
I know tis is off the subject Sheryl but is the information Carole has posted accurate.? It is disturbing to me if so. Makes me kind of anxious as myHBWYP oncologist depends on PET to check if the medicine is working.
I would like one PET scan per year. I had stage II breast cancer with lymphnodes involved. I had a PET scan after chemo and radiation; then once a year until 2013 when my oncologist told me we are only allowed to get 3 PET scans total per life from now on. She is upset about this, and so am I. Although I did get very nervous before the PET scan each year, I worry more now since I can only have a mammogram and ultra sound from now on. I have no way of know what is happening in the rest of my body, and I never will know until I have symptoms - by then, it's usually too late.
I've had so many scans,every 6 months or less, /c.T that is last one results was I now have bone and blood cancer. New breast cancer, spread to bones. I had about 7 bladder tumors. No help now cause it is in my blood.
This is true for me. Increased anxiety and worry around breast MRI time each year. My doctor and I have chosen not to do any other scans primarily because I am concerned about increased radiation exposure. Down the road I am concerned about a secondary cancer occurring from all the radiation tx plus radiation from scans.
CT scans come with a lot of radiation. Don't let them kid you. However, the use of CT's and PET scans should be weighed out for each person's individual situation. I am seeing a top notch naturalist doctor, who is also and MD, which is allowing me to strengthen by immune system and detox my lymphatic system so my body will be better able to identify and get rid of cancer cells.
I was diagnosed with ovarian cancer, stage 1C, Grade 3, clear cell carcinoma, in November 2012. I had 6 chemos, and my CT scan in July was clean. CA125 and exams have been good until now.
I have my 2nd CT scan coming up on January 30....and I am so stressed. I do find that I am too focused on my body, and phantom symptoms are creeping up on me.
I am usually an easy going person, but will be so happy when this scan is done, and results are good.
I am happy to have survived cancer, but I accept whatever comes or goes, and I find that keeps me going, and happy.Acceptance and thankfulness everyday to Him.
It is very easy to let anxiety get a tight hold as scan time approaches. No one wants to jump back into the cancer patient mode. You really need to enlist strong mental control to stay in control. Stress is not helpful for cancer patients......have to keep the cortisol levels down!
I have decided (one month short of 75), that there will be no more scans or cancer treatment for my Islet Cell of the Pancreas. With Tuberous Sclerosis on the brain and calcifications affecting cognition and dementia; my concern is to live as much a quality of life while I can and have done to the present.
I note this is a repeat from 2013. I was surprised when I read one of the comments and got to the end and realized it was mine just about a year ago in Jan. 2013. However, the discussion will never go away. Personally, I am glad when my doctor tells me it is time for scans even though I wonder what they will find. My last scan showed a new spot when it has been inactive for over two years and some improvement in other places. If I had not had a scan how would she have known. Does this mean it has been caught at an early stage and time to change medicine. That is her plan. She is going to do a PET scan and make a decision. Anxiety and depression goes along with this disease. We just have to accept it. Of course, now I have been concerned about the new spot and waiting anxiously for the next scan She said we needed to wait at least two months before repeating. The spot was found with a CT. This time it will be PET. Those are very tiring to me Everyone is different in beliefs and do not feel Mayo should be blamed for people's opinions. That is what this is all about. Expressing yourself. I give God Glory every day and find comfort if some of you do not that is your choice. I try to handle the anxiety by contacting friends. Not to talk about cancer but just trivia. I make a special recipe and must admit I watch a lot more TV than I used to but so be it. It helps. We do have a wonderful Friends Togther group that meets but have not used it yet and probably should. I sure had fun checking out the 75 perTTDCE cent sales after Christmas.
This issue is so accurately described! Even when I know I have had no new symptoms or indicators, the anxiety is palpable. A related concern is not wanting to reveal my worry because that just spreads to family and friends. Mostly I rely on prayer.
Wife diagnosed with stage II TNBC in Oct. 2012, double mastectomy in Dec. 2012, chemo and radiation spring and summer of 2013. Asked her oncologist about a follow up PET scan in Dec. 2013. Doctor told her it was unnecessary, costly and there was nothing they could do if the cancer reoccurred. Doctor told her you could only have so many PET scans in your lifetime. My wife is a worrier.
Hello everyone, My grandmother died of lung cancer in 2003 sadly my family was to late to find the help she needed. Recently, my grandfather was diagnosed with colon cancer and doing more each day to help him my aunt and uncle found the mayo clinic and how wonderful they have been, so nice and patient in dealing with my big family. Lately its been hard affording all my grandfathers doctors appointments and medication, when I had past by a gentalman while leaving his appointment and he had told us to google up Cancer Benefits because my grandfather was in the service. confused by the gentalmans suggestion i looked it up anyway and i would like to thank him because my grandfather qualified for this benefit and we all are so excited to now able to continue with his appointments with the Mayo Clinic because how wonderful they have been to us. our family is so thankful to run across such a greatful man that we like to share the generousity with all of you!
I am a 3 year lung cancer survivor. The cancer we found early and the tumor was in the left lung only. The removed the entire left lung. I had scans every 3 months the first year, then every 6 months and the once a year. The last one I had in December showed that the spots I had on the right lung has grown slightly so next week I go for another scan. I am sick with worry. The last report they used the word adinocarcinoma. My oncologist said they over-reacted but... I know the scans increase your risk of reoccurrence but what are the alternatives. Also I meet with the oncologist the same day as the scan and immediately get the results, which is great. Please pray for me.
in re scans..... "scanitis" may affect some but isn't it more reassuring to believe that cancer is less likely to be an unknown, lurking in the dark, only to be discovered because of scans ?
I don't find Margaret's post offensive......I just think that everyone has a different way of dealing with cancer. BUT, I do not think that anyone should tell anyone else that their way is the WRONG way......yes, we all have to be educated patients and be part of the decision process..........don't just say "yes doctor" to everything they suggest. I am also what I consider to be "chronic", as my doctor says my stage IV ovarian cancer is not "curable", but is "treatable". I'm not at all religious, but if someone wants to "praise the lord", they can do it as long as they don't think that I agree with them.
By the way, there really are patients out there that "don't want to know about it, hear about it"....my Mother was one of those breast cancer patients that didn't want to know anything, and she didn't last too long :(
I am sorry to say that I find your post offensive. You sound like my sister-in-law who refused to listen to medical advice and decided to take over her own care with diet,vitamins, and a natural alternative holistic care option. She just entered hospice and is expected to be with us only days or perhaps weeks. We are all coping the best we can and should respect everyone's decisions about how they want to live their life and in whatever way they find joy and peace. I have been in treatment for 5 years and my cancer is considered a chronic condition. My strong faith, family and friends continue to give me peace, hope and joy.
Reading all this religious crap really bothers me. I look to the Mayo Clinic for science and evidence based info, not religious extremists. I know you don't have control over what people write, but can't you please edit it?
I've had Stage IV Breast Cancer for 5 years, and I KNOW that God has nothing to do with it. It's the way that we humans have polluted our earth, and the way that we eat that leads to cancer. I am spending my time learning how to better care for myself in this regard, and NOT having scans. I've refused mammograms outright, as the overwhelming evidence is that they are ineffective and harmful. Other scans I have when I feel the need to know, NOT when my doctor tells me to. He's only interested in prescribing chemo to pay back the corrupt pharmaceutical companies. I've done very well without chemo and radiation, thank you very much.
People - EDUCATE yourselves and DON'T really on religion and doctors to tell you what to do!
I'm usually okay with scans. Three months after my first round of chemo, I had a recurrence of ovarian cancer. I have PET scans every 3-4 months to check to see how well chemo is working (i've been back in treatment for 19 months). About 6 months ago, my scan showed that I had developed new areas of cancer activity and my chemo treatment was immediately adjusted. Since then, the scans have been "clean".
It helps that my neighbor is the technologist doing the scan. And when I have my mammograms, they tell me right away if everything is normal. And my doctor will call as soon as he gets any significant changes.
I agree that at times it seems all a bit too much, I get scans every 6 months because that is the way it is done in my country through an obligatory protocol.And I wonder , is not there a better test to ascertain what your cancer situation is in order to evaluate risk? I have heard of a new one, and wonder if Mayo does it or not.
I find that anxiety is with me most of the time in spite of the fact that I am functioning in a pretty active life. My oncologist asked me if I were depressed because I am so tired all the time. I suppose that is true but I believe a greater factor in this scenario is the medicine. The discussion is focused on scans this time. Personally, I am grateful for the scans. Yes, I get anxious prior to them. However, in my own way I am glad for them as they help the doctor and myself know what is going on inside my body. She has re assured me that if they show the medicine is not working she has others she can try. That is comforting to me. She also schedules before the scans a daate to see her after the scans. It is two days after the scan. That is no unreasonable to wait. I go to see her by myself on the regular visits but my husband goes with me on the day of reports for support. So far after a year each scan has shown some improvement. I am a person of faith and neer forget to thank God not only for the good news but for the gift of knowledge given to doctors, nurses and researchers who work diligently on new machinnes to diagnosis as well as improve on medicines available to us. So I look at scans as a positive part of my treatmment even though my blood pressure usuall jumps up prior to the news. Have a good day everyyone.
My anxiety is created by the numerous exposures. I want to know what is happening in my body but there is a huge cost for these images.
My major concern is whether the cat-scan can cause the cancer to return.
Let me tell you, I was so relieved to read all of the comments posted......I thought that I was the only one that starts feeling this crazy. 4 years ago diagnosed with stage IV ovarian cancer, 6 months chemo, hysterectomy, 6 more months of chemo. Everything has been clear, I have "graduated" to ct scan once a year, I'm due in May. Yes, I have been dwelling on it way too much, wondering IF I should make any summer plans, etc. Stressing myself out, when I know better, I enjoy living in the moment and make sure I don't waste time being depressed....oh, and I survived breast cancer, over 20 years ago, and remember too many times when I closed myself off from everyone and concentrated on being MISERABLE..which makes me aware of how the "what ifs" can cripple your life.......I read A LOT, fiction and non, takes me away from the "what ifs"...I still don't know what the signs of reoccurences are, went to my gp with a laundry list of things that didn't seem "right", he thinks I am anxious for the ct, told me to get a colonoscopy to ease my mind (!)Anyone else run into this solution? I'm thinking, what the oncologist answered me once before, that anything that would show up in a colonoscopy would show up in a ct...
I am now almost 6 years out from my first chemo treatment for breast cancer mets. to the stomach lining. I started with CT scans every 3 months, then 4, then six for a total of about 14 now. I will admit that I do have some concern with having so many but the peace of mind at least partly provided by the scans, has allowed me to develop some confidence in my body again. I get my results from the records office several days after my scan so I don't have to wait the week when the oncologist will discuss them.This really eases the stress of waiting.If I feel a twitch or slight discomfort over several weeks before the scan, I joke with the techs to take an especially good picture of the area "just in case". I find I have gradually gone from very stressed weeks before a scan and almost a dependency on them to tell me things are at least stable to a more accepting attitude of what will be will be.Mine is inoperable so I know it's not leaving! There was a point where every 3 months felt too frequent but I was fearful to go to six. I'm fortunate to have an oncologist who has let me gradually move to the six month span. Every night before I fall asleep I give thanks for the day, and yes, in the 2 weeks before the next scan, I will be "busy" as the time comes closer. It's a gradual movement to some confidence and there is a little period to relax and almost forget.
I'm a 3x survivor of stage 4 lung cancer. I'm very aware of the damaging affects of stress and the studies that support this, especially for those of us touched by cancer and under treatment. My strong faith and my active involvement in my treatment plan relieve any stress I have with scans. I am very engaged in my treatment planning and communicate frequently with my medical team regarding my condition so I fully understand my options. Because of that, I know that as long as I'm doing everything possible to help me face this disease, there is really nothing to worry about. Nothing else can be done so why worry? If it's time for God to bring me home, he will. In the mean time, I'm not going to waste a single second of my blessed life and all the opportunities ahead of me because I'm worrying about something I have no control over. Just live and LIVE STRONG my friends!
I am a stage 4 breast cancer and am on my 6th year. Yes, indeed, the many scans that one has to go through (CT scan, CT sonogram, bonescan) and add to this MRI, ultrasound, x-rays, etc. on a more than regular basis can bring thoughts of anxiety. To cope, I talked to God and I tell Him my fears, anxieties, etc. He has never left me nor forsaken me. During the most trying moments He makes his presence felt.
I worry about the CT contrast ruining my remaining quarter kidney. Early detection versus risk of ruining a normal-functioning piece of kidney...I had renal cell carcinoma 10 yrs ago in one kidney and then the other kidney got it 18 months ago...
I am a real bear to be around before scans, and I've known this, but in the end and as I get closer to a scan, I turn to a deeper type of prayer and trust knowing HE has a plan. Prayer is where is it for me. The suggesting of knowing "exactly" when the results are in is a great idea.
I think scans are far to frequent-5-6 times per year--I have breast cancer mets to my right lung in the form of a 19 mm lung nodule--it is coming from an auxiliary lymph node in my armpit--the rest were removed with the right breast in 1984, I was on Tamoxifen for 9 years, in 2000 in left breast and had flat polyps in colon which they thought were cancer and were not but 8 1/4 of colon was also remove at same time as left breast. 5 & 6 times per year on scans started in late 2008, prior to that up until 2008 had chest x-rays every year--that is way too much radiation and can cause you to have cancer in your lungs. So by scanning all the time they keep you in too much stress and I believe stress can cause cancer! 4 times per year is more than adequate!
I am soon to complete 8 doses of chemo for grade 3 breast cancer..with a lumpectomy first.. Will i need to have yearly scans to check or will bloodwork suffice??? Are both sometimes used???
One of my friends who also was a survivor aptly used the term " scanxiety" to describe how we feel the two weeks prior to a scan!
I have scanitis for sure, which kicks in just before I have to go to UPenn for CT/MRI scans in morning followed by bloodwork and Onc appointment in afternoon. What I love best about UPenn, is that the results are posted within the day. Last time, I was able to get my MRI results at the appointment and my CT results were available just after I left my appointment. Also at UPenn, you can access your reports online.
I am 11 years out from cancer diagnosis. Any test, scan or surgery after cancer certainly brings out my fear and vulnerability to death. Everyone will die.
The good news is the docs and technicians are there to serve me and I believe God uses the medical team to comfort me in His place. Prayer and Scripture reading, and talking with friends who love me helps, but yes, I feel anxious before my exams and yearly scans. My feelings, vulnerability and actions show the faith and courage I have to live in human skin before heaven.
Sometimes people will die after many scans and treatment, like my husband last year. Medical treatment has not advanced to cure or extend life of some cancer patients. He fought through 9 near death experiences over 21 months. He was smiling after he died, I believe as he met Jesus his Savior. How powerful to have such a memory of a courageous man of faith I love and respect!
EVERYTIME MY HUSBAND HAS A SCAN IT IS A WEEK BEFORE WE SEE THE DR FOR RESULTS ..I GET SICK WITH ANXIETY AS A WEEK FEELS LIKE A YEAR AND THE FEAR OF BAD NEWS IS ALWAYS JUST TOO MUCH.
I agree with some of these other comments....I'm actually LESS anxious when I know a scan is scheduled. I get more and more nervous the further APART the scans become (I'm now at 9-month scans.) I know there's a risk/danger that goes hand-in-hand with scans, but honestly I'd prefer more frequent scans. Call me crazy, but they comfort me. I want to know as soon as possible if the disease strikes again, so I can fight it right away....
I am currently a 3 year survivor of S3C colon cancer. I am also an RN of 30+ years. Sometimes that works for me & sometimes it works against me. I am also a worrier by nature. My smart & kind oncologist knows all this. He calls with the scan results either the evening of, or the very next day ( scans have been every 3 months until lately).I use prayer .... and a mild sedative the day of... to help with the intense anxiety running up to the scan. My oncologist & I have had a little running joke over the years that resulted from his first post scan call.
" How are you ?" he asks in hushed tones.
"How the heck to I know ", I reply " you're the one looking at the scans !!" We both laugh. I hope we always will, but it is only minimally within our control. Like stepping off a curb to cross the street. I try & accept that what will be , will be.
Have just read all yr comments. I found non-hodgkins lymphoma 5 years ago. After chemio, two years of 'peace' it has reappeared again. I have just finished a cycle of biological therapy hoping it will have made a positive effect and will find out in a month's time after the pet scan. Not fun waiting but on the other hand thank goodness we have this possibility of verifying the situation. Otherwise....no doubt positive thinking, deep breathing and smiling help. And exercise - that's a good start and good luck to all!
Actually, I look forward to my scans..If there is any cancer detected, its probably in its early, treatable stage.. if they don't find anything glowing, I'm one of the few people in the world at that moment that can be assured that I am cancer free...that's the little mindset I use to get through the stress..I've also gotten to know the healthcare folks and view them as friends and I am glad to see and talk to them before, during and after my scans..I keep very busy during the in between time (between scan and reading of scan) so, I find it hard to dwell on the outcome..I've had "concerned" readings followed by second scans.. I think those are the most stressful.. but I just keep telling myself that if they have found something,it is early and hopefully it can be destroyed...
Approximately every 3 to 4 years of my 74 years I would have to get an MRI after the age of 13, due to epilepsy and Tuberous Sclerosis on the brain. So when Islet Cell cancer struck 4 years ago, I had a practice to remain calm and unworried by silently singing to myself America the Beautiful, followed by The Lord's Prayer. No problems, anxiety, worry ever came with this practice.
I was diagnosed with Lymphoma in 2010 proceeded with treatments and have had no sign of reoccurances. I agree with having anxiety before my check-ups and scans, but I feel that the positives outweigh the negatives when having routine scans. I want to stay on top of my health and any tests or scans that will inform my doctors and me about any issues before it is to late is perfectly ok with me. I also like that reassurance and ease of mind after the tests and Drs. appointment are all good and I get a clean bill of health.
I feel relieved and worry free knowing that a Scan is coming up whether it is a PET or A CT. If I don't have one scheduled, I am always afraid that the Cancer will return before the next scan if it is a long ways off. I am currently being scanned every three months.
I'm with Shirley. I do my best to worry only when I know I have something to worry about. I've had two unrelated cancers in the past three years-- four surgeries, and two rounds of radiation. One of the cancers was late stage. I'm GLAD my doctors scan as often as they think is right. As one doctor said, "You've had two aggressive cancers. So our job is to look at you carefully and test when something looks suspicious. Your job is not to assume every test is a dire warning." I can live with that (in more ways than one!)
I found that My hospital has many sites that I can get my Cat Scans but one is more private and comfortable. The staff are particularly nice and remember me. That helps take some of the dread out of it because I enjoy seeing them. I also tell myself, at least I'll know what's going on like "spying on the enemy (cancer)".
My first husband had CA of the prostate and then Lou Gehrigs.And husband number 2 had massive hemorrhaging (37 units of blood) two codes and 4 surgeries. (10 yrs ago) In May I was diagnosed with colorectal CA after a long 2 year hunt (lost 46#s.) Many complications and was on TPN for 6 months. 2 weeks ago I got word that I am stage 4 with lesions on my liver and bladder. I see the oncologist this Wed. 3 weeks is too long to NOT worry...which gets me to the way I handle the waiting period. It is the doctors job to worry and when he worries, he can tell me and I will decide if I am going to worry. I am an RN and know too much and can not afford to do any "what ifs" So I live in the present (one day at a time is too long). I am completely hooked on machine embroidery.Still taking classes and working on projects and in 2 days time I will find out what my options are and then I can "worry" constructively.
Hello, my husband was told he has stage 4 lung cancer in both lungs,a large tumor in his right upper lob... He has had over 30 radiation treatments and several chemo treatments he is to be scanned Mar 1st.He also has a heart condition and two years ago had bladder cancer. He can't breathe with out oxygen 24/7 and getting worse. my thoughts are is he can't exercise and he eats fair, i a, afarid he is just one day stop breathing??? or the treatments damage his heart? He doesn't want to give up because he wants to live. Are we doing the right thing? He has a wonderful cancer doctor, and i know she can only do what she can to help him.I am asking is there anything else we can do for my husband???Thank you, alabama
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