• JMS's Avatar

    Was diagnosed with pancreatic cancer last April. Will finish treatments next week and am worried about impact of completing treatments.

    Asked by JMS on Friday, November 23, 2012

    Was diagnosed with pancreatic cancer last April. Will finish treatments next week and am worried about impact of completing treatments.

    I'm seeking advice about how to handle moving from a very active treatment schedule - that provided me a clear mission - into a much more passive role of just waiting for periodic scans to see if the cancer has recurred. Has anyone else experienced anxiety about this type of transition?

    21 Answers from the Community

    21 answers
    • Harry's Avatar

      There's been some discussion that the biggest fear is that first periodic check-up. "Will I pass?"

      The way I look at it is that I won! For now. And, because we know what we are looking for, we can be vigilent and be on top of it faster if it dares poke its head out of its cave again.

      over 7 years ago
    • ticklingcancer's Avatar

      Recurrence is a is a chance with all cancers so I think this is a pretty common concern. You have to stay positive though. If you spend all your time worrying about if your cancer will come back, I think I you will find yourself struggling to "live".

      over 7 years ago
    • nancyjac's Avatar

      The answer is in your perspective. You view this as a transition to "just waiting for periodic scans to see if the cancer has recurred." I was thrilled when I didn't have a doctor's appointment, a test, a treatment day in and day out. I was thrilled that cancer and treatment for it no longer dominated my schedule and my life. Were you "just waiting for periodic scans to see if the cancer has recurred" before your diagnosis? Why would you do that to yourself now? For me it was a transition to getting my life back, to being in control of my schedule, to doing what I WANTED to do, not just what I NEEDED to do. If you are still centering your life around waiting to see if the cancer has recurred, you are defeating the whole purpose of cancer treatment.....to give you back your life, both in terms of quality and quantify. Don't waste it by spending it on just waiting to see if it recurs.

      over 7 years ago
    • Peroll's Avatar

      Congratulations on completing your treatment and being cancer free for now. I can understand the apprhension as you have been focused on beating the cancer, but your nefocus should be in getting your life back to where it was before cancer. Doing this means not focusing on thefact that the cancer mght come back, but focusing on living every day to its fullest. Do everything you can to forget about cancer between check-ups. Enjoy life. take that trip you have aways wanted. You like a lot of us have been given a second lease on life and you never know when or how it might end so live it up.

      over 7 years ago
    • FreeBird's Avatar

      It's a good thing that they were able to detect it at stage 2. Most of the time, they don't detect pancreatic cancer until very late when you can do almost nothing about it. Earlier detection puts you in a better position to maybe manage this thing. Supreme Court Justice Ruth Bader Ginsburg has lived with stage 1 pancreatic cancer since 2009, and is still going as of November 2012. Your body has to be healthy besides the cancer problem. In my non-professional opinion, after seeing what treatments did to my dad, enjoy any little break you can get from treatment at the right times, let the rest of your body recover from the toxins that were dumped in, and enjoy quality time to feel better and do the things you want. You are still moving forward, and watching your opponent carefully to see its next move. Turn down the high beams, and focus on right now. Grab onto every day of your life and make the most of it. Tomorrow will arrive without any effort, and you can deal with things as they come. I understand that waiting while not knowing exactly what to expect is the hardest part. It's amazing that your treatments worked to the point where you can take a break.

      To put your mind at ease that you're doing the right thing, you might consider a second opinion from someone who specializes in gastrointestinal cancers, and sees a lot of pancreatic cancer cases. The Pancreatic Cancer Action Network may be able to help you identify experienced doctors in your area. http://www.pancan.org/section_facing_pancreatic_cancer/oneonone_support/index.php I have used this resource to help identify doctors in our area, in the event that dad wanted a second opinion. They gave me a great list.

      Wait and see is not my favorite thing either!

      over 7 years ago
    • JennyMiller's Avatar

      During the period of surgery, chemo & radiation -- I was able to stay positive because I was actively fighting this evil enemy. When this active treatment ended, I felt like I was laying my weapons down and it scared me. I am learning to be on guard but not to be in constant fear so that I can enjoy a decent quality of life. I am taking a pill for 5 years -- so I am considering that my weapon along with a positive attitude and regular checkups -- and most of all -- Prayer which brought me through this "storm". As time passes, I think less about the cancer -- almost to the point that it was a bad dream and I am awake now. I wish you the best.

      over 7 years ago
    • tombo's Avatar

      yes the transition is not fun,,funny i never thought of that,,going from a very active treatment,,to a passive role,,your a very smart lady!,,i suppose for me,,5 days a week,,chemo and radiation for 5 months,,my brain was on survival mode,,then it all ended,,and heree i am a year later,,getting scanned every 3 months,,the doctors are treating my lung cancer as a chronic disease,,i get chemo every 3 weeks,,and i HATE IT,,hahaha,,but,,i am still here!,,in my humble opinion,,i think its normal to expierience your kind of anxiety,,just try to relax,,have fun,,and laugh laugh laugh,,of course i pray hard,,also remember to reach out to your family and friends,,i promise,,MOST,,will be here to help you,,good luck,,i will be thinking and praying for you!

      over 7 years ago
    • LisaLathrop's Avatar

      I deal with the "waiting" on a regular basis. Have knee infarcts now due to lack of oxygen to the knee....most likely a result of my AML Leukemia. Sometimes I feel like I have bone cancer and every time I have to go in for a recheck...I worry, am nervous, anxiety chimes in, etc. But I try to focus on the FUTURE! Made a "live list" and set some goals for myself....like to lose the weight I gained in 1 year's time, start my business by the end of 2012, etc. Keep moving forward and don't look back! You're very lucky with pancreatic cancer....most times that is hard to detect which means hard to treat....or too late to treat. Good luck to you!

      over 7 years ago
    • kelley_gleason's Avatar

      I've had the cancer come back 3 times since my original diagnosis. I've learned to just live in the moment and not take any moments for granted. Worrying just takes away from living. Try your best to put it off as long as you can. I'm not saying I don't get freaked out the week of each scan, but other than that, I put it away...

      over 7 years ago
    • DebbieJo1950's Avatar

      Hi JMS ~ I finished treatment 3 weeks ago and am living in what oncologists call "the trough". Meaning I am very depressed and anxious over what will happen to me next. I was told that this is very normal to go through. Debbie

      over 7 years ago
    • LauraJo's Avatar

      I think a lot of us go through this. You spend so much time actively doing...treatments, surgery, doctors. And for most of us, once we are diagnosed, it's hurry up, hurry up. When we transition to the "All done now" stage, I think its kind of like slamming your car engine into reverse at 50 mph. It's not at all that we are ungrateful that we are cancer free, and done with treatment, but it takes a while to shift gears. I found myself dealing with depression at a point in time when you would think I would be on top of the world, and ended up doing a couple of months of therapy, which was really helpful in allowing me to work through the transition from "Hurry, hurry" to getting back to my normal life. And yes, the first few rounds of scans will cause some anxiety & sleeplessness, but hopefully, yours will come back cleanly, and eventually, it will get better & become a routine thing. Eventually, with time, you will be able to look back on this as just a "bad year" as my surgeon said.

      over 7 years ago
    • gogolf's Avatar

      I have been going through this for 3 years and my advice is now your mission should be lead a very active full life. Your anxiety is normal and when I learned it was normal I felt so much better about everything I was feeling. My motto I adopted from the University of Oregon Ducks football team and it is "Win The Day". Go Win The Day and Go Ducks

      over 7 years ago
    • geekling's Avatar

      What are you saying?

      You are alive. You do have a mission.

      It is to stay that way in as healthy a state as possible.

      You need to research. You need to figure the best ways to clear the poiusons which were placed inside of you in order to get rid of the cancer. You need to oxygenate your cells so they don't go into wild fermentation again. You need to fuel those cells in the best way humanly possible.

      There is no passivity. You need to move on your very own health.

      Be proactive. When the scans come let them reflect your active participation in (re) building your own healthy body and mind.

      Best wishes for recovered good health.

      over 7 years ago
    • Joy535's Avatar

      Hello JMS,

      Thank you so much for being brave enough to put into words exactly what I think I've been feeling...

      I'm not sure what advice I can give except my own experiences. 7 years ago I was diagnosed with Stage 3 breast cancer. I had a lumpectomy, chemo treatments for 3 months, radiation every day for 6 weeks, and took an Arimidex pill every day for 5 years. I was able to put all of that behind me, and "get on" with living my life happily. In fact, I had to mark the dates on the calendar to remember how many years had gone by because I just didn't remember. It was like remembering the birthday of a very distant relative.

      I had tumor marker tests every 6 months for 2 years until 6 months ago when a tumor marker test was just a little elevated, from a normal for me of 22 to 42. The PA thought it was probably just a difference in the lab they had sent the sample to. A month later I decided to be more pro-active and get another test and send it to the old lab and the new lab. Because both tests were still elevated I had a CT scan that showed (after a biopsy to confirm what kind) a new gallbladder cancer (not breast) that had spread to the lymph nodes and liver. It was caught just by the fluke of the elevated tumor markers for breast cancer!

      I have very recently completed 6 months of chemo, and I'm about to have an unusual procedure of biopsy of a lymph node that was shrunk a great deal by the chemo (as were the lesions on the gallbladder and liver). (The two Drs. that I'm dealing with are the only two Drs. in the state of Montana that are able to do this type of biopsy and surgery; and they both are in my hometown!) That will show if there are any more active cancer cells in the lymph nodes. If there are I will be given choices for how to live "the rest of my life" which my Dr. says will be a very good life for at least a year. If that lymph node biopsy shows no more active cancer the Dr. says he will do a very major, dangerous surgery to remove the gallbladder, parts of the liver that was involved, and the lymph nodes. He tells me that the surgery will have a "miserable" recovery time of at least 6 weeks. I will be having that biopsy next Friday, and will find out the results, and my choices, the following Tuesday (my birthday)...

      So... my advice to you is to do what I have done for the past month between finishing chemo and awaiting this next phase. CELEBRATE finishing chemo and a very active treatment period. ENJOY getting the poisons out of your body and being able to "live your life" again. CHERISH yourself, your family and friends, and each new day. GO outside and enjoy the beauty and peace of nature. BE every and any thing you ever wanted to be. DO as much or as little as you feel like; thank those who have supported you; clean your house; tell your family members and supporters how much they mean to you; make yourself "pretty" again; go for a walk; give back...

      My mantra is "Today is the first day of the rest of my life. Whatever will be, will be. Let it be..."

      Good Luck and God love you, JMS

      over 7 years ago
    • pancrease54's Avatar

      I think we ALL moved to some level of anxiety after active treatment. Don't let it preoccupy your mind, Think positive. I had 8 CT scans in 8 months and the portal at MyHealthatVanderbilt.com let me read the radiologists report so I always knew whether to expect a call. After 8 CT with contrast my onc decided that was more than enough radiation so we moved to annual scans. I think insurance was complaining a bit as well, If it gets bad, ask you onc for a low dose anti-anxiety drug but, they are a real bear to get off of,,

      over 7 years ago
    • NanHope's Avatar

      One of my doctors told me that studies have shown that the two most stressful periods in cancer treatment are right at diagnosis, and when treatment finishes. I totally experienced a, "Now what?!" period when treatment ended. It did help me to know that it was a normal and expected reaction, and to just try my best to live in the moment...each and every day. Each one is a gift - life is good - enjoy it! Blessings for your journey :)

      over 7 years ago
    • Russ' Avatar

      Dear JMS,
      You and every other person who has ever had cancer have the same fear after they finish treatments, because we believe that the chemo or radiation is taking care of the cancer, and what if we stop treatments...what will keep the cancer away? I belong to an organization called Gilda's Club, and one time the question was asked of all of us..."what is your biggest fear?" Almost everyone said.."that the cancer will return." My biggest fear however is not that the cancer will return, but if it does will I be able to fight it as hard as I did the first time. While you are in the process of fin ishing your treatments, start to reach out to those who are newly diagnosed with cancer. Become a support person for others...it will make a whole lot of difference. You will be pre-occupied with helping others that you will not have the time to worry. One of the things we come to realize over time is that this disease will be with us forever. There is not a day that goes by that we don't think about cancer. As a cancer survivor our lives are not the same anymore. All cancer survivors have a life that we call…“our new normal.” So many things have changed, but the memory of what I went through will be with me for the rest of my life. I will never forget the day I heard the words… “you have pancreatic cancer.” Even though I am in remission I do at times allow myself the time to reflect, and feel the sorrow of that day. This is why it is so important for me to be able to tell my story to others who have cancer. It is great therapy for me and it gives hope to others that this disease can be beat!

      Best to all of you...

      over 7 years ago
    • kacy's Avatar

      Yes. I am on the wait and see plan. I have blood drawn every three months to check for a rise in my CEA levels. It is nerve wracking. I wake up each morning and remind myself that I am feeling okay and have the day to live fully. I am scheduled to go to the lab this next Tuesday....yikes....Hoping for the best outcome and preparing for the worst.
      I had an adverse reaction to chemo so nixed that after the first infusion. Stage 2 colon cancer with open margin dx last April.

      over 7 years ago
    • mgm48's Avatar

      I experienced the anxiety. But not for long. My sincere wish is that you experience years of anxiety until you no longer notice. May your scans be clear and your life full and long.

      Keep it positive and smile :)

      over 7 years ago
    • geekling's Avatar

      I must be different.

      When the docs were finished torturing, er, treating me, I was quite sure I was "clean". I was, however, in a very debilitated state, a weak little kitten being able to run circles around me in 2002.

      I rested a lot. I bought a better juicer and had fresh made juice every day. I bought a better dehydrator and began to learn more about food to nourish myself. I became an active participant in the "raw & living food movement". I went out with friends. Sometimes I fell asleep before I got home. Because of the type of cancer I'd had, I had to make sure I was always near a bathroom and cried my eyes out when I missed one that time and had to race home. Race isn't the right word because I was very slow moving back then .. let's say I backed out of the fun and sat on a plastic bag on the ride home. But I did not quit. I did not wait passively.

      After 5 months I went to the gym and began the long road to recover my strength completely. Sometime (don't actually remember when) by the sixth month after treatment, I got retested and the test determined that I was clear of cancer. I continued to eat food as fresh and clean as possible. I went from being weaker than a kitten to being a very strong chicken.

      I made little goals for myself. When I reached one, I made another. I began at the gym with 2 whole minutes and wound up, by the third month, spending nearly 2 hours before I was done.

      I still did not feel up to par. I went back to the docs and insisted I was not getting well. Another health challenge popped up its ugly head. I still did not quit. I kept up trying to improve myself and to take back my life. I started taking all sorts of supplements and did massive amounts of research into solving my challenges. Things very slowly got better.

      Then there was a storm which, again, damaged my house and the requisite fight with the insurer followed. Things got worse again. Much worse.

      In 2007 I was both murdered and saved. My health or lack of health had reached a point where I could no longer continue. My finances were decimated and I was unable to figure out even how to get in and out of a shower, nevermind feed myself or hold a conversation. An acquaintance who was a public adjuster came to my home to try to convince me to leave it.

      Without going into the miracle of how he got me to leave, I did pack up a weekend bag and exit that house. Everything I'd ever owned was gone, lost to mold intrusion.

      It was mold which caused the cancer (a squamous cell carcinoma is a skin type of cancer) by depriving me of oxygen. It was mold which caused the blood disease by compromising my immune system. It was mold which drove me insane and it was my food methodology which kept me alive to tell you about this.

      Now it is 2012, nearly 2013 and I write this letter to you. I've come a long way. I've written a book about how the food kept me alive and how it can oxygenate and get others revitalized too. I am still ridiculously allergic to mold but I no longer think I am dying or totally insane and better understand the allergy and the symptoms which come with it. I am also beating the allergy in that my reaction is lessening.

      If I'd simply waited for my next test, if I'd taken the happy pills the docs offered for my depression, if I'd kicked back and simply waited for my next test, clearly, I'd not be writing anything to you if I had kicked back and simply waited for my next test. Figure out your wants, desires, and needs and go after them. Be proactive. Take baby steps, just little bites at a time toward gaining your health and claiming your life as your own.

      over 7 years ago
    • Kitsaplakegirl's Avatar

      congrats with finishing treatment. I too was experiencing anxiety-sitting around waiting for the other shoe to drop. So when it did,I wasn't so surprised.I went in for my surgery to have my butt sewn up,colostomy,etc. Then ,after healing up enough to get around,I was very depressed,near suicidal and I lucked into "HARMONY HILL". A place on Hood Canal that offers FREE cancer clinics for cancer patients and/or anyone affected by cancer(including caregivers). I attended a free weekend workshop,all inclusive -organic ,gluten free foods,many grown on site.To say the weekend was lifechanging is a gross understatement.Maybe there are some places in your area that offer something similar .Been There-Kitsaplakegirl. HARMONY HILL .ORG (Union, Washington)

      over 7 years ago

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