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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...
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.
Sheryl M. Ness, R.N.
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Join the discussion at #livingwithcancer.
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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!
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.
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
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.
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...
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!
(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.
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
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.
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.
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
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.
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.
I have reoccurence breast and I want to know why it came back after ten years.
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.
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..
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!!!!
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.
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.
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.
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.
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.
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.
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.
During a routine mammogram cancer was found in my left armpit. I have been in the diagnostic stage for over 2 months now. I get a lot of kindness and support from friends, family and co-workers. What I'd like to say about comments being "cliche" or annoying is that it doesn't matter. Honestly, whether the well-wisher says the wrong thing or not, you have to know that they are just trying to be supportive. I am never annoyed by that. I have thus far been able to remain happy and hopeful because of all the support.
This Dec. I will be a 9 year survivor following surg/chemo/rad. I find that I do not worry what the future will bring, as until it happens (as it will) I am on "free time". Throughout the entire medical nightmare that was my treatment (not going there)and the years after, I found my slogan of no news is good news made waiting easy. I do not wait in dread. I'm ok with whatever happens. Just enjoying my borrowed time and not freaking over what may come my way in the future. Having worked 7 days a week through the whole ordeal my heart goes out to all of you going through it. Hang in and know there is life after cancer!
I can understand that when you are told you have poor survival odds regarding your cancer that one could feel a sense of relief to be told that it's back. I will not find it to be a relief if i recurr or find it a relief if i'm told that my cancer metastasized becasue the chemo treatment didn't work. I have 1 year behind me with Triple Neg Breast Cancer Stage III and I am concerned more about metasteses than local recurrence for obvious reasons. I truley don't think others around me who have not had cancer understand what they are doing when they continually give the advise to be positive, talk positive. It gets annoying. I just want to tell them so and walk away at times. Also, when others constantly tell me I look good when I feel lousey every day from fibromyalgia pain and fatigue--that gets frustrating as well. I know they probably don't know what else to say. I wish they would be more personal and not "cliche".
Diagnosed w/ stage IIIA Triple Neg. breast cancer August of 2010.Finished tx May 2011. Not sure how to proceed with imaging & also worry about results. I think about recurrence. I'm afraid to do PET and CAT scans because they are high in radiation & can contribute or cause secondary cancers. If i recurr my oncologist tells me i have on average a 2 year survival. Why should i expose myself to the radiation of PET scans and CT scans? If they find something & start chemo I will feel worse sooner than later. Marilyn, I too struggle with not feeling well each day as I have severe fibromyalgia & fagtigue which got much worse after chemo. I can not sit or stand for long without pain and am 52 yrs old. I also have thyroid concerns. It's been an arduos process to apply for long term disability. I pray I get long term disability as we are financially challenged. I lost my job as they could not hold it any longer. I too tell others I don't feel well and am unable to do things because i don't feel well.I have 2 children 12 and 13 and spend a lot of my time tending to them. I too am told "You look good" but physically i don't feel well and tohers do not understand. Yes, cancer can come back even many years down the road like Susan. Just because the first 3-5 years go by doesn't mean you are scott free. Although, many women do not have breast cancer return. Andrea cudo's to you - you are an inspiration. It will not come as a relief to be told my cancer has
I've forgotten that after transplant surgery cancer is still a possibility as well as others. I'm grateful for the newsletter which gently reminds me to eat well and to exercise and to take care of the gift of life.
I loved your note but I would ask doctors to check periodically without us having to ask for scans and other tests. For example, pet scans every so often. I am sure if we support to the insurance companies that they would save money by detecting early the recurrences they would agree to this too. Many thanks for allowing us to comment and your wonderful and wise notes!!
Thanks for being honest and sharing your experiences and feeling. First I find it very helpful to read others thoughts that mirror mine. I am scared of recurrence, it sometimes totally freaks me out. I agree that when the check up approach (mine is in 2 weeks) it is with severe trepidation. I think I have mentally bought into the fact that this will happen, I will have it again. I am not even that scared of what will happen if it does, it is this limbo place of fear.
I admit that sometimes I wish I could see my doctors every month just for reassurance. It makes it harder that my 50 year old brother died in August from cancer. I could really relate to many of you saying it would be easier to just have it come back and get it done with.
Thanks for all your posts. Good book suggestions and other ideas.
Ginny, I just completed my 3 month checkup. While my results werell negative, I too was somewhat anxious. But I'm reminded that God tells us do not be anxious for ANyTHING. We must remember that as we go through this journey. Go into your next session as I say "prayed up" it works. Read the word Ginny often.I pry for God to give you peace as you move into the next phase. It's okay to talk about it with those who have walked or are walking in your shoes. I to had been reluctant to share but when I began I found it to be healing as well. I'm 64 , a widow(husband of 43yrs died of ALS) so it's been challenging. But refuse to let this disease rule my life. I have varying symptoms from stge 3 TRIPLE NEGAtIVE BC. Hd a radical mastectomy. Know that many are praying for you AND claim the victory over this diease for you. God bless you. Keep n touch.
Erin, I am so with you. I have sclc and there no boubt that this will return, it is just the matter of when? Everyone says how great I look, they have no idea how worn out I am. I finish my treatment 3 months ago and I am still so tired.
Thanks for these comments...so helpful and it helps me to pray for you as I read --Ginny I'm glad you are reaching out...
These comments and the article were lovely to read...normalizing feelings, giving good thoughts and ideas and it helps me to pray for those who wrote here..I am especially praying for Ginny and so glad you reached out...a good reminder for me was the following note -gave me hope that my state of mind will improve over time: I find that with my faith and with time, my state of mind has improved. The fear never leaves, but I think of those in the world who are less fortunate and thank God for each beautiful day.
Thanks to all you have posted here. I have recurrent breast cancer with postive lymph nodes and will start Chemo on Tuesday so as you can imagine I'm scared as I know the effects will be terrible and debilitating but also know I will survive it and move on.
Your posts are not only an inspiration but uplifting and positive as well.
We can give each other hope knowing we are not alone but have a vast network of both men and women who are experiencing the same thing which unites us.
Thanks once again.
GOD before us
GOD behind us
GOD above us
GOD beneath us
GOD beside us
GOD within us
My sister in law sent me this card and I read it everyday to comfort me. Hope it helps you also.
It is a good feeling when you realize you are not alone in your fight with cancer. I was diagnosed with Multiple Myeloma in 2008, had a Bone Marrow transplant in 2009, and was cancer-free for 18 mths when after my birthday, I was told by my Medical team that 2% of the cancer had come back. It was very heartbreaking, but I cried and then moved on to what I need to do next. However it had progressed while I waited to take a repeat lab test, so I ended up in the hospital having spine surgery to remove the tumors that had appeared on my spine, and came out with a steel cage, cement and listed as a T6 incomplete paraplegic. Not knowning if I would walk again, I went through PT/OT and with prayers, support of family & friends, I have progressed to walking with a walker and sometimes I still use my WC, but not as often.
So shoulder on people, with GOD or however you seek guidance, you will make it through until you are called home.
Have just read the other comments, and am very appreciative of so many sharing their feelings. It does help one to not feel "so alone", in dealing with this situation.
One thing I'm having trouble with, and didn't see addressed, is feeling too ill to "enjoy each day", as almost everyone wants to do. Psychologically, I'm geared to do just that, but due to effects of some of the treatment I had (two surgeries; chemo; high doses of radiation for recurrence), plus an ongoing and increasingly "bad back" (severe osteoarthritis) and a chronically inflamed thyroid, I'm finding it difficult, and sometimes impossible to do the things I enjoy. Have always been active - running, hiking, gardening, travel, etc. - but am gradually finding difficult, and/or impossible to do these things. Am unable to sit, stand or walk, for more than very short periods. For that reason (and severe fatigue) had to opt out of a camping trip with my grown kids this weekend. Am terribly disappointed, but still thankful for the things I can do.
My question is: Does anyone else find it difficult, or impossible, to "live each day to the fullest", even while in remission?
I'm 67, invasive breast cancer (Stage III, Grade III,) in 2005; recurrence in 2007. Two surgeries; chemo and radiation. Am putting off having a follow-up CT scan for a small "nodule" found in my lung, as I don't plan to have any further treatment, but would like to enjoy whatever time I h
as the spouse of an esophageal cancer survior.4 years this november.it's an ongoing fear everyday of it returning.also being a registered nurse and seeing cancer each day doesn't make it easier.but we no longer worry about the little things.we enjoy our new grandchildren and evry morning we wake up together and give thanks.when we no longer have our 6 month check ups that'll be a new fear we'll tackle together.it's important to talk openly to your spouses.i know my husband worries about me all the time but he's the one that had the cancer,but he says we both had it.appreciate each day !
I find all your comments so true. The fare,the worry,the uncertainty and the suffering. As a young women I was diagnosed with breast cancer two years ago and I'm well now.At the beginning I was very positive and still I'm but often I think about death; my own mortality. Will I have the strength to cope with cancer for a second time? I hope I won't find out. Wish you all to be able to cope with your illness.
I was diagnosed with stage 11 Multiple Myeloma, had 4 cycles of chemo and steroids, and was then sent to a major CA center to discuss having a stem cell transplant. Much to my surprise ( shock really ) I was told that I most likely have smoldering myeloma, and did not need treatment at this time, nor did I need treatment when I had it! I cannot tell you how strange that was, to have " adjusted" my thoughts, emotions and life to having a lethal CA and now to be told that the risk of the meds I was on was unnecessary, and that now we would "simply wait for the disease to progress" to start treatment again. I know there is no cure for this disease, and the watchful waiting, when the outcome of it progressing is certain, is taking its toll. I am trying to have a positive outlook, what ever that means, and I try not to think about it, but I just don't know how to cope with this.
Does anyone else out there have Multiple Myeloma?
Here are the names of some books and cd's that have sustained me through very difficult times. I hope they help you all as well: The three books of Rabbi Naomi Levy "Talking to God" "To Begin Again" and "Hope Will Find You" I am Jewish but Believe me you don't have to be Jewish to find help and sustenance from these 3 very personal accounts of Rabbi Levy's own personal journey through very tough times. The second recommendation are all the meditation CD's of Jon Kabat-Zinn. Espec. useful prior to those 6-mo ct scans!
Thank you all so very much. May God be with you all and may you find comefort in Him.Health and Healing for you all.9cykap
It is always a GREAT feeling of relief after every 6 mo ck up. Then there isnt much worry until I make an appointment for the next ck up. That month is so full of anxiety that i even start to get ghost symptoms. Tomorrow is the day to make the next appointment. It does get better with every clean check up
I am 41 stage 4 non hodgkin lymphoma. Just finished tx's and in remission. It is frightening to think about the future and the thought of the monster awakening again. It is comforting to hear people in the same situation than me, with the same fears, trying to "stay positive". About a year ago I went back to school, before this cancer thing. I'm obviously confused if its worth to continue knowing that at any given moment it will comeback, but life is about taking chances and about doing what you really want to do. enjoy life to the MAX !!!
Thank you, Linda, for the website. I went to it and decided to be more pro-active to make sure I get checked because I have several ovarian cancer symptoms. Even if we think it's nothing, it is always better to check. I admire everyone's courage and your desire to be positive for yourself and your family. Take time to do something for yourself each day. Ask for what you need or wish for because sometimes family members or others don't know what to do. Maybe a foot or back massage? I will pray for all.
When I saw the comment made about feeling better when it finally came back, I feel the same way! Mine has not come back yet but I find myself almost wishing it would. Then the guilt starts! What kind of person would want the Cancer back? The thing is that I know it will return that is the nature of the beast I have and the waiting is getting unbearable. I can not discuss this with family or friends, I mean they are all praying for it to stay away right? I love my life and try to live a positive life, am told how great I look, but underneath I have this secret fear and if I ever even try to give it a voice I am told to be more positive. Does anyone else feel like screaming when you hear these catch phrases?
For Nonie and other ovarian and related cancers, I would recommend a most valuable resource, the Foundation for Women's Cancer at http://www.foundationforwomenscancer.org/
This organization sponsors four great Survivors Courses each year in various parts of the US. These are FREE and so very professional. I attended the one last April in Albuquerque sponsored by the Southwest Cancer group there and met over 250 friends I didn't know I had--survivors or friends of in every manner of health--some thriving, some not so. On one side of me was a 20+ year survivor, on the other side was a woman whose sister was just beginning treatment. Me, I was operated on for Stage IIIA in January 2010 and finished chemo in August 2010. This April event came at just the right time--fabulous doctors, load of information, wonderfully upbeat AND the whole last session was about recurrence. I look careful notes and the information helped me know what "might be" but also connected me with the FWC resources and new people in my life.
In August 2011, my CA 125 went up and a CT scan revealed the cancer has recurred. In deciding to go with an aggressive approach and more chemo I feel that I'm "in charge" based on the knowledge base that I had about what could/might/would likely happen.
It's said that "Knowledge is power." I agree. I am sure other research groups have resources, but this is a great one for those of us with ovarian, fallopian tube, etc. cancer.
i enjoy getting the newsletter and reading what other people have to say about surviving, dying, going thru TX's, worrying about the results of whatever test you are taking, feeling good, feeling bad.....I'm a breast cancer survivor of 11 years and had it return last October. I felt that it would come again - just too much cancer in my family and it was almost a relief when I was diagnosed again w/cancer - at least I wouldn't have to wonder wif I was gonna get i. This time the cancer mestastisized (sp) in my left ischium and my doc said maybe I have five yrs. Like someone else mentioned i am enjoying my life as much as I can on a day to day basis. Ican't tell u how many chemo txs I've had since last thanksgiving - most of the time It's the only place i feel good is in the tx room. All the nurses are wonderful and we laugh alot. i had radiation this time to my breast and to my hip. I've only recenlty noticed that my left breast is at least 3X smaller than my rt breast. i stuffed my bras this morning with a pair of underwear so the size of my breast wouldn't be so noticeable. I tried toilet paper and I couldn't get it to look natural. I always try to hide my breast and am so afriad someone is going to notice that it is considerably smaller. I wish I would have both of my breast removed. I went thru extensive re-constructive surgery and would not do that again. It's too bad our breasts are so available for comments, looks from others and are so important in society.
Debbie is correct; it is comjforting to know that cancer survivors are here to face this together. I had stage two, grade three breast cancer and had the cancer and thirty-one lymjph nodes removed one and a half years ago at Jacksonville Mayo. I was allergic to Taxotere (chemo) and developed organiziong pneumonia which I am currently battling. It is frightening, but I find that with my faith and with time, my state of mind has improved. The fear never leaves, but I think of those in the world who are less fortunate and thank God for each beautiful day.
it is so very comforting to all to know that all of you are here today to recognize all the life issues we all face. cancer is probably scarier than most illnesses- but to be here to tslk about it makes me very grateful.
there is no easy path to deal with anxiety over facing mortality every time we take a test or face a birthday-- but this is true for so many aspects of all of our lives.
i had a fake sense of security concerning my health prior to cancer, but now i listen to my body. sometimes i'm right and sometimes i am wrong but i always check it out. i have "freq flier" visits with some of my docs.it's ok. and its ok to say it out loud to any one who cares about you.how we live our lives is the only legacy we give to ourselves,spouses and children.
I have been in remission from CLL for over 1 1/2 yrs. The thoughts of it returning are always there. You live with them and go on living. My faith has always been strong. This was a real test of faith and trusting God's will in all of this. I prayed for ways I could help others and God immediately answered that prayer. I work for an ambulance service as a non-emergency transported. I have shared my testimony both on and off the job with a number of patients and others and prayed with some; one being completely healed. I would encourage others to seek ways to turn their cancer into a positive. My faith and trust in God and His son Jesus Christ has been mine but can be yours also.
God's Blessings, Love & Healing,
Revelation 3:20 NASB
"Behold, I stand at the door and knock; if anyone hears My voice and opens the door, I will come in to him and will dine with him, and he with Me."
I'm in remission from stage 3A ovarian cancer. At first, I was very positive that I could beat this. As time goes by, I get more and more scared. It is a lonely disease because there are so few survivors and no support group in the local area. I go from reading everything I can about the disease to ignoring it.
I have been cancer-free for five years. I had stage 2 Non-Hodgkins Lymphoma. I still live in fear of its return. My CAT scans are very stressful just because we are looking for cancer. I am so glad to know that others feel this way too. I had decided that I might just be a paranoid fool for my fears. Thanks for making me feel normal.
Approaching one year out of chemo soon and got the dreaded call today. Had my normal 3 months oncology visit yesterday, labs came back with bad results. Need to get back in for a pet scan. As a cancer patient in remission since Feb, we all know what the #'s mean. Trying to stay positive, I was so positive first trip, not feeling so energetic this trip. Wait and see game. Have never read blogs or talked with others much, kept my diagnosis as quiet as possible but feeling a little down and need to reach out. Thanks for the blog. God Bless
I have read all the posted comments and I feel a better that their are survivers out their that have the same feelings I have. I enjoy reading the articles because they help my frame of mind.
Intelectually, I know these feelings are normal but tey are very tough psychologically. I am 13 months post-treatment for a squamos cell tumor in my throat. My first post treatment PET scan showed no signs of cancer; 90-day follow up visits with my oncology team were all "thumbs up." Two weeks ago I began having a sore throat again and was getting hoarse frequently. I began getting this very uneasy feeling as those were the symptoms when they found my tumor at stage 3. Finally I made an appointment with my ENT and he put an endoscope down my throat and cconfirmed that there are no signs of any cancer or tumor; I am suffering from post-nasal drip. The shadow of cancer never leaves our minds but we should go on living life to the fullest. I don't know if I learned a lesson today, but I certainly feel relieved and realize how fragile our mind is when it comes to survival.
Thank you for bringing this up. It is a fear we have to live with, no way out. The good side of the fear is it keeps us vigilant, makes us do aerobics, eat well, manage stress, as well as we can. It's just plain awful to have to live with the fear, but we can't do anything about it. Being positive to me means doing what we should, not thinking I will be OK. I never thought that my body betrayed me. Rather maybe I betrayed it, by not weighing what i should, for not having exercised much, by not consuming foods and beverages that were organic and healthy. My best motto is to think kindly with my body, myself and with others. I have to remind myself though all the time. Stage 3 grade 3 double negative breast cancer is not for the weak, nor many of the cancers and other illnesses the other writers have mentioned. Good to be with others and get new ideas to handle it.
Sometimes that harder you try to put
unpleasant things out of your mind, the
more they come to surface. The good advice
already given is to enjoy the moment and life
is a fleeting experience for almost everyone.
I'm nearly 6 months into remission, non-Hodgkin lymphoma. I have a PET scan in 2 weeks. Meanwhile, like Amylyn, I have been feeling the same back aches and pains in my side that I had originally ignored but that finally lead to discovery of a large tumor, but they are mild and intermediate. At 3 months in remission my doctor called it phantom pains. I'm very apprehensive about the coming scan, fearful of the worst but hoping for the best. Though difficult to get to, I find a positive attitude and confidence in my doctor, modern medicine, and Rochester Mayo helps. It served me well through the original treatment.
5 years out of treatment and suddenly worried that my time is limited(was given a 10yr survival rate) Dont know how to shake this feeling, it is very unlike me and how I dealt with cancer. I exercise eat good but constantly think my life will be over in a flash. I think my 53rd birthday somehow triggered this. I'm just hoping to get out of this funk soon.
I've beaten back cancer three times in four years. The first time I went into remission the fear of recurrence was a constant dark cloud over my life. There was an ever-present feeling of waiting for the "other shoe to drop." At about a year post-chemo my blood markers suggested a recurrence was coming and my anxiety rose to life-sucking levels. I sought counseling. In retrospect this was the smartest thing I could do for myself beyond just getting more treatment. I've since gone into remission, recurred again, and am now back in remission. I've learned to live well with the uncertainties of cancer and I have a life full of joy.
I overcame 4 stages of epilepsy, have Tuberous Sclerosis on the brain, emphysema and Islet Cell joined the crowd 2 years ago. Radiation, adriamyacin, streptozocin and 5 cycles of Sutent before we took a chemo holiday. In less than 14 days I'll have to decide if I want to live like today, or almost like a zombie due to the chemo. I'm 72+ and with the chemo didn't care to live another day.
Having cancer 4x means my body has betrayed me. There's nothing I can do to change that...and I can live a healthy lifestyle but if there's going to be a 5th time, I can't change that...so...what I do is live in the moment...and love everything about that moment. When I find myself getting anxious, I force myself to go back to the current moment and appreciate everything about it. I save the anxiety for awaiting test results, but in-between testing times, I live a totally normal life and revel in it.
It's been a few years and I still wonder occasionally if it's back. The good thing is that it's a constant reminder to do the things that i want to do, now instead of later, because you never know.
Good article...nice to know the feelings are normal...I find the more I exercise, the better I feel..but it is damn hard to get started after chemo..
I survived cancer as well as a dear friend of mine. There have been several others who did not that we knew quite well. We've been pondering the question about survival. We made it but they didn't and there is an element of guilt present in our discussion. I know there are lots of factors to consider, 1. type of cancer 2. stage 3. treatment option choice 4. lymph node involvement- any ideas would be appreciated.
It's comforting ton see this, because I have been struggling with this myself. I am 29, and a recent cancer survivor...Hodgkins. I have been feeling those familiar "sick" feelings again, and can't tell if it's justifiable or just paranoia. Its reassuring to hear that these thoughts of "could it be back?" are normal. We do have to find a way to breath in and move on!
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