• All done and NOW I get scared?

    Asked by JamieInWyoming on Wednesday, June 17, 2015

    All done and NOW I get scared?

    I am wondering who else got through chemo with flying colors and THEN fell apart? I had every doctor and nurse telling me how they wish everyone was as positive and upbeat as I am, but now that the chemo is over (they actually let me go early because I was doing so well) are feeling upset, scared, tearful, etc? I had a basketball sized tumor on my ovary, it was only stage 1A (I don't even know what that means), it didn't spread, and they said it was all taken out. They asked me to do 6 rounds of chemo and let me go after 5 because my CA125 # was so good. I am having nightmares of it coming back. People feel like it's their job to tell me about how "Aunt So n So" was in remission and then she died 3 years later of leukemia. I am so afraid it's going to come back, and I KNOW this is not a good outlook. I wish I could find a group that met in my area, but I cannot seem to find anything.

    26 Answers from the Community

    26 answers
    • Ejourneys' Avatar
      Ejourneys

      First, your reaction is not unusual in the least.

      "After experiencing cancer and its allopathic treatments, most people are often left wondering, 'What just happened?'" writes Dr. Regina Huelsenbeck. "Most of the survivors I have worked with actually report the time immediately following completion of cancer treatments to be the most psychologically difficult."
      Source: http://ritualsofhealing.com/psychological-intervention-reduces-risk-of-cancer-recurrence/

      "I know of others who experience this same post cancer, post treatment collapse," writes Belinda Hawkins. "A time and space when we sort of implode, re-evaluating what's important, our relationships, our work, our life in general....That post treatment lull, that feeling of 's**t, what just happened?'. And while some people feel angry, or numb, others feel abandoned and rudderless on a sea of disbelief and despair."
      Source: http://embracingchemo.com.au/all-over-bar-the-shouting

      "The world seems different now, in so many ways," writes Jo Hilder. "How can you just go back to normal? What the h e l l is normal? For many folks, the worst and most stressful part of having cancer isn't having cancer -- it's what happens when successful cancer treatment ends. It’s that anxiety-producing 'drop-off', when the specialist gives you an all-clear and sends you back to your life again with a smile and a follow-up appointment in a few months. This gap can seem just like the edge of a cliff. What happens now? Who will be taking care of me? Who can I talk to about my fears and anxieties about the cancer returning?"
      Source: http://www.johilder.com/the-great-post-treatment-drop-off-sometimes-the-worst-part-of-cancer-isnt-the-cancer/

      When I was finishing chemo, even with 33 rounds of radiation ahead of me, I saw that void coming. I met with the LCSW at my radiation center and am active in that center's programs. That helps.

      The American Cancer Society has patient services in WY, with an office in Cheyenne:
      http://www.cancer.org/myacs/greatwest/programsandservices/patient-services-in-wyoming-gw

      Even if there's no group specific to ovarian cancer, a general cancer group can also help. I hope you can find something. And WhatNext is a great place to vent. We get it.

      about 5 years ago
    • geekling's Avatar
      geekling

      If you are up to it, yoga & guided meditation.

      about 5 years ago
    • wife2elliot's Avatar
      wife2elliot

      Hi! This feeling is SO normal! I have it too! I was diagnosed with fallopian tube carcinoma stage 2, had an encapsulating tumor that was cancerous but didn't spread to lymph nodes. Even though I had an anaphylactic reaction to the Taxol week 4 and had to switch to Taxotere with the Carboplatin for the remainder of my chemo treatments, I was/am a very positive person and felt that if I could do this chemo with all the troubles it gave me then I could encourage another person in spite of the affects..all that to say, that after the surgery, chemo, and doctor visits, it seems like we always have in the back of our minds not 'if' it returns but rather, 'when will it return'...Does your chemo center/hospital have a general cancer support group? My cancer center I received treatment at has a support group for anyone that's had any type of cancer. I've not been yet but am thinking about going.

      about 5 years ago
    • banditwalker's Avatar
      banditwalker

      I too had feelings of dread, anxiousness, and despair, all coming about nearly a year after treatment stopped. My onc. mentioned PTSD. We all hear of this when we speak of veterans but it can occur with anyone who has been through a traumatic experience. Car wrecks, losing a loved one, etc.... I was the one who was upbeat through the whole treatment plan and wondered why all of a sudden I was having these feelings, I became miserable. I have been getting at least 30 minutes of strenuous excercise at least 5 days a week and already feel better. Am sleeping better also which I am sure I was lacking before. You are not alone in these feelings. And yes, I still get worried everytime I have an ache or pain, is it coming back?

      about 5 years ago
    • meyati's Avatar
      meyati

      Honey, I was scared of everything for a while. Thursday, I start my rounds of specialists, scans, consultations, labs, ans more labs. Mine is labeled incurable. I've been in remission a while, I think that I'm getting the hang of it, less tense, but I know that every 6 months increases the chance of it coming back.

      I want you to congratulate you on your successful treatment. While you had a really awful experience, stage I means that the cancer didn't break up and start spreading to other tissue. It didn't go to your lymph nodes, it didn't go to your liver, it's not going through your blood. I wish that I was so lucky.

      I'm not sure that if it's just this area, but person to person support groups aren't always that great. Around here, breast cancer seems to be considered the only real cancer. Because of the medical procedures they have a high survival rate. I went to one meeting where a woman has throat cancer caused by a type of herpes virus. She indignantly said that she didn't want to hear any snide remarks from breast cancer patients that she could have prevented this, as she never sucked on any man, so shut up. She was a nice white lady. I'm saying this so you don't automatically assume a racial stereotype. Sailors with Mesothelioma in the lungs from spending years on old warships are told that they caused their lung cancer. I read a comment on the AMA MedPage Today site, where an oncologist ranted how he was sick and tired of treating face cancer patients, because they caused their own cancers by smoking. I never smoked. I've had nurses and oncology counselors tell me that I should just leave, because I was wasting financial resources and wasting the time of doctors and staff that could be used on people with 'real cancers' that they didn't cause.

      I got an Email invite to a cancer support group for mid-August. This is the desert and it will probably be a 100 to a 110 degrees. Then the time is set for noon to 3:30, out doors, with minimal shade- hiking, horse shoes, etc. To make it worse, it's on the treeless west side of a solid rock mountain range. We're also a mile high, where the UV rays are much more intense than in lower altitudes. I decided this site is enough- we don't accuse each other..

      about 5 years ago
    • Asanayogini's Avatar
      Asanayogini

      I've been feeling the same way too, I did well through chemo and radiation , now that it is over. I fell very anxious and freaked out most of the time.mi just don't want to go through that again. Do not know whether I could. I am on Ativan to help with anxiety, but how long can I do that. Some days are good and some not. I try to enjoy the good day. Hope you can too

      about 5 years ago
    • TXHills' Avatar
      TXHills

      As you can tell, your feelings are normal and to be expected, although they can be mighty uncomfortable. During treatment, we are often focused on the treatment and getting through it. Afterwards, we have time to process what happened. There is a period of grieving and mourning for our old life, before cancer. Then, we gradually come to accept it all and find our "new normal", which does include the possibililty of recurrence. Now we know, it really can happen to us, and not just theoretically.
      Counseling can help, as can yoga, exercise, support groups and this site. CancerConnect has free phone counseling sessions available and other resources, as well.
      I'm glad you are through with your chemo. That is a victory, in itself.
      Here's what I figured out, that helped me feel less alone: Nobody knows the future and nobody gets out of this game alive. We all have to accept our mortality sometime, cancer just forces our hand on that.
      Try to let yourself feel what you feel, knowing it will pass, even though it can seem overwhelming at the time. Find ways to have some joy each day. You will learn what works for you and what doesn't. We have to learn to live with uncertainty, letting go of lots of control, and just be in today. Cultivating gratitude can help you feel more centered and less anxious. Since none of us can know what tomorrow will bring, we may as well be joyful about what we get today.
      I wish you the best.

      about 5 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      When we are in active treatment, we have a schedule and a game plan. I always had posted my next chemo date & my next appt w/my surgical oncologist. When that schedule goes out the window, I, at least, was left at lose ends. How do I fight now? Where are all my oncology nurses who fussed over me? How will I know if I'm still doing well (except every 3 or 4 months when I go in for a check up)? What do you mean my nurse case manager is closing my file? It's hard to go from being part of a whole team to almost being on your end, except for those check ups. And I get the fear of recurrence, too. I was stage IV (panic!), but mine was a very non-aggressive cancer that my surgeon was surprised moved as far as it did -- the joys of no symptoms. I agree w/the suggestion of meditation. I've been a part of a meditation class/workshop/group for bereavement after my Mom died last year. It's helped w/my fears about my cancer, too. Ironic thing is -- we've all been touched by cancer, even though it's not a cancer support group. Almost everyone else lost someone to cancer, whereas Mom had a stroke, and I'm the cancer survivor.

      about 5 years ago
    • IronMom45's Avatar
      IronMom45

      Normal normal normal. I'm trying to live in the moment. If means walking the dog I realizing what she is actually doing. Sniffs at every bush, what does the bush look like. What is pretty about it? My kids what is it they are saying not just uh huh to the endless girl talk of teenagers. Enjoining the first crushes, the beauty of the first dance dress and the excitement of the boy with the flowers. The details of my son expanding his career and the details he shares. My mother as she makes tea. How she wraps the string around the tea bag on the spoon. Details the small details of everyone and thing around me that let's me know I'm alive today. And this moment all anyone has cancer or not. This is helping me bridge this gap 4 months after chemo. July 1, I'm going to try to ease back into one of previous skills by assisting another. Not being in charge just helping, not paid just being in the environment the moment. One step. I'm hoping by doing so I will look up one day and see 5 years, 10 years etc. but if not I didn't miss anything along the way. Find a joy, keep a focus and know you are not alone.

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      Since I was 8 years old, I had been terrified of cancer. My fear was increased soon after graduation when my classmates were beginning to be diagnosed with cancer. I spent 60 years obsessing about cancer, before I got it. Did all that worry help when I got cancer? Not at all. After I got cancer I decided that I would not worry about it at all. So I made up my mind, I would never fear cancer again.
      You must be as proactive in your survivorship as you have been in your battle with cancer.
      Here is a brief article on steps you can take to have a healthy survivorship http://www.livestrong.org/we-can-help/healthy-living-after-treatment/planning-for-healthy-living/
      Also my local YMCA has five programs for cancer survivors.
      Also my PCP recommends that her cancer survivors have 2 general physicals a year rather than just one.

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      By the way watch your cholesterol and drive safely.

      about 5 years ago
    • TXHills' Avatar
      TXHills

      BoiseB has some great points. I think more breast cancer survivors actually die of heart disease than of breast cancer.
      If you are ready, start planning for survivorship and how you will care for yourself now. Any things you'd like to change? Any new practices you'd like to try? This can be a time for experimentation and playful exploration, to counter the anxiety. It's still your life and you still get to choose many things.

      about 5 years ago
    • lilcat's Avatar
      lilcat

      I had a very similar experience. Went in for endometriosis and cyst, then learned I had stage IA ovarian cancer. I sailed through debulking and chemo for the most part. Then about 1 month after my last treatment I became very fearful. I believe that is how I deal with tough situations--in order to get through it I am positive and brave, then when the coast is clear I allow myself to 'fall apart' as you put it. I am now 8 months from the last one and so far the last two scans were clean and CA-125 was 6. I am building up my confidence and positive outlook with each day, reminding myself to live in the present and not worry about the future. May your positive outlook and strength grow with each passing day.

      about 5 years ago
    • barryboomer's Avatar
      barryboomer

      Maybe YOU can start a Group.

      about 5 years ago
    • JamieInWyoming's Avatar
      JamieInWyoming

      What a blessing to wake up to all of your answers and ideas. I am glad to know this is typical. I am usually a VERY positive person, so this is even harder on me because I feel like I am beating myself up for NOT being positive. A friend who works at the hospital in town is going to get me in touch with the cancer support group, and I will give it a try. I always fall asleep when I try to meditate, lol! Thankfully, I have many things that make me joyful, but right now my biggest problem is that they are all outside and strenuous activities. (We have a farm and raise all kinds of animals) I am frustrated at not being able to do the things I want to yet, but I realize that 6 weeks since my last chemo, I am not "well" yet, lol. God bless you all, thank you so much for taking the time to write to me. Love, Jamie

      about 5 years ago
    • Ejourneys' Avatar
      Ejourneys

      I identify with your frustration re outdoor activities. One of my biggest adjustments during treatment was having to hire outside help for yard work because I am used to being self-sufficient. After a 10-month gap I was *thrilled* to return to light yard work. Two months after that I was back to baseline intensity.

      It does get better. I was a few weeks past the end of chemo when I had to set the clocks back, and with my vertigo I had to be very careful using my step stool to change the kitchen clock. By the time we had to "spring forward," I almost didn't have to think about it.

      about 5 years ago
    • Pambsky's Avatar
      Pambsky

      Jamie, I am 11 years out from Stage IIIC fallopian tube cancer. Now is the time to take really good care of yourself. Eat a healthy diet, exercise, get plenty of rest, reduce stress in your life. Maintain a healthy weight. Do everything you can to help yourself stay clean. Right now though, also give yourself a break. You've been through a tremendous ordeal. Cut yourself some slack. Your normal life will come back slowly. Just take good care of you now. Put yourself first and be nice to you.

      about 5 years ago
    • kalindria's Avatar
      kalindria

      I've felt the same. I think, after some reflection, it's because while we were in treatment, we had a huge job to do - get through treatment and get well. Now that our scans are clear and our CA 125 is under control, our focus is gone.

      So I found a new focus and that may help you too. Whether it's work or family or something else, find it. Embrace it. So far, it's really helping me. I hope it will do the same for you.

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      Jamie I might say don't worry about that "positive" attitude. Trying to always have a positive attitude can drain you of energy that could be used to get healthy.
      My cancer did come back and in the same spot as a new cancer. But I had 2 worry free years (except for super volcanoes) I had become very healthy so round two has been a much easier battle. I have been cancer free for two years now and I am now back to worrying about super volcanoes, near earth objects and global warming,

      about 5 years ago
    • Patriciaa1963's Avatar
      Patriciaa1963

      It really is normal to feel that way. I felt totally lost after I was done. I got so used to being so closely monitored, then your done. You are set free to go about your life. The thing is, you don't know what or where to return to being normal. It does get better I promise! I was so afraid that it was coming back immediately. I have now had 3 of my 3 month follow up appointments, coming up on a year since my last chemo & everything is looking great! I do get anxious as my appointments approach & am on pins & needles until I get my results.
      Regarding people feeling the need to tell you how their relative did, I think they are trying the best they know how to relate. They don't realize that what they say isn't helping. One of my favorite sayings I found was: "If I tell you I have cancer, don't tell me that your grandma dies from cancer, it isn't helping". I know I wanted to say that so many times to people. I did hold my tongue. Keep your chin up!!

      Patty

      about 5 years ago
    • Pambsky's Avatar
      Pambsky

      They really should give us some counseling about "being set free." One minute you are being so closely monitored and the next minute it's. "See you in a month." Huh? It's a major game changer and we aren't prepared for it.

      about 5 years ago
    • barryboomer's Avatar
      barryboomer

      Why do you think there isn't some intermediary place to go to get help.

      about 5 years ago
    • jackspivey123's Avatar
      jackspivey123

      frankley i was XXX off at my onclo.after completion of chemo and radiation treatment,she simply said we are done see you in three months,cut off my pain meds whitch had to be liquid and XXX caned me like a bad apple,well ,there went my suport group,that left me feeling lost and helpless,just so you know,hope shes reading,that was tree months ago,

      about 5 years ago
    • Pheonix's Avatar
      Pheonix

      Yes I agree. It's scary when you're set free!! I sort of had the opposite reaction. I felt totally safe after I finished treatment. And although I still keep positive, as time goes on, I am more afraid of a recurrence & the possibility of a bad outcome. Maybe it's because after we go through something life threatening we realize how fragile life can be & also how precious.

      about 5 years ago
    • Pheonix's Avatar
      Pheonix

      BTW I think BoiseB's answer is so very on point. I'm going to adopt (steal) her attitude.

      about 5 years ago
    • MyahsMom's Avatar
      MyahsMom

      Jamie, I read your question and sort of chuckled. I never had the type of cancer you had - I had breast cancer. I went through sort of the same thing. I didn't go through that long round of radiation - I had radiation twice a day for five days. Then I heard the horror stories of an aunt/cousin/uncle/acquaintance who had that type of cancer and did well for so many years and then it came back and finally when they would get towards the end of the story I'd ruin it and fill in the "punch line" and say "and they died". The person telling this story would look at me with their mouth dropped open and look like all the blood had drained from their face. Finally, the word got around and the stories came to an abrupt halt. We don't need to hear those stories. I heard horror stories when I was pregnant. We need to think positively. I am now five years out. I don't think about the cancer every day. If it comes back, it comes back, I can't stop it. I'll just have to deal with it. Before, my husband was here to hold my hand. He has passed with lung cancer (Stage IV) just a little over a year after I was diagnosed with breast cancer. We have to do what we have to do. Hugs to you. Keep us posted.

      almost 5 years ago

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