• Has your cancer journey gone as you expected it would go?

    Asked by PhillieG on Tuesday, August 30, 2011

    Has your cancer journey gone as you expected it would go?

    Did it go better than expected or worse than you expected?
    Did you stay on chemo (if you chose chemo) longer than first expected or were you able to finish sooner or was it just as you thought it would be.

    15 Answers from the Community

    15 answers
    • karenglowacki's Avatar

      Hi PhillieG,

      I am writing as a family member. My FIL is wrapping up his radiation and chemo treatments soon - only 6 more to go, yay! As far as I know, his journey seems to have gone the way the doctors predicted it would. They said he may need a feeding tube - he thought he wouldn't..but he did. They said he could lose his sense of taste and he did.

      It's strange. We hear how things are expected to go, and you don't think they could be as bad, but then they get bad. And it's still surprising, somehow. Even though it shouldn't be a surprise. I know I'm rambling. The only real surprise is that I am pretty certain that we had expected only radiation after the chemo. But he has been getting weekly chemo along with the radiation. But he stayed on chemo and radiation generally as expected.

      This is just my perspective as a long-distance family member.


      about 5 years ago
    • lovekitties' Avatar

      Hi Phil, I guess I have to say I didn't really know what to expect about this journey. I am 18 months out from surgery and my stoma and I are doing fine. I have to say, having a stoma has been easier than I originally expected. Once I got past the worries about how to deal with it, it has all become mostly routine. I guess the biggest surprise has been the folks who are walking the same journey who have offered their support. It helps to know that you are not alone in your feelings, concerns and experiences. So that has been a good surprise.

      about 5 years ago
    • CherylHutch's Avatar

      I have to admit, I didn't know what to expect either. I had no idea this ongoing ache in my left side that was more annoying than anything else, was going to turn into this huge, life-changing/shattering event. It was so unreal that when doctors would look at me very seriously and explain how serious it was, it was like they were talking to someone else. It couldn't possibly be me that was going through this major, serious illness!!

      I was given plenty of talk about what to expect as far as treatment goes, but it was while I was in the hospital when first diagnosed that shocked the heck out of me. My surgeon (who saved my life because he insisted on doing a scope himself and not relying on other doctors thinking I had Divurticulitis) found the tumour... and that it had already perforated through my intestinal wall and attached itself to my abdominal wall (no wonder I was complaining of an "ache" on my left side ;) ) Anywho, to explain the gravity of the situation, he did say that they first had to clear up the perotonitis that had developed (infection within the abdomen) that could be fatal on it's own, and THEN he would go in after the tumour, cut out as much of the intestine as would be needed and hopefully sew me back up. BUT (there's always a BUT), if he went in and they found the cancer had spread throughout my abdomen and stomach, then he would just be sewing me back up because there wouldn't be much that could be done from a surgery point of view. That is when it struck me that I might be in some serious deep water here!!

      Well, to make a long story somewhat short... that will have been 5 years ago this coming Dec. I have "lived with cancer" ever since and I'm still around, alive and kicking up a storm. I may be on chemo for the rest of my life, but so be it... I much prefer being on chemo than lying six feet under!

      In answer to your question... the chemo treatments don't surprise me. I'm still always surprised that it's me that is going through them, after all, other than a weight problem I'm healthy, no???? :D


      about 5 years ago
    • Jane's Avatar

      I have had 5 recurrences of cancer. It started out (and still is) colon cancer but I have had it 2x in the liver and 2x in the lung. I have had all the chemo drugs and no longer do chemo. I either have shaped beam radiation or surgery this point. I seem to have a new brush with cancer every two years.

      about 5 years ago
    • EskimoDoll's Avatar

      I was originally going for 8 rounds of chemo. On the 6th round I was told that it was back in my liver and would be switching to pallative care.

      I was hoping for a cure, remission.. Even at stage 4, I didn't think it would be such a battle. My optimisim is still hoping for a cure, I still think I am a survivor.

      I have a new grandbaby. He just turned one, I told him I'd like to see him graduate college, get married and have a family of his own. At 45, I am optimistic there will be a cure in my lifetime. I still pray for the cure.

      Last month I decided to take a break from chemo. Mentally I was tired of chemo and I cried. I was tired of being strong and I cried. I cried. I cried. I cried. I'm hoping that with this break I will be stronger and will be able to go back on chemo.

      almost 5 years ago
    • ttisme's Avatar

      Since the newest post is 3 months old, I guess venting is the only option.

      I went for a year with pain in right side, first diverticulitis, then gall bladder removal, then colonoscopy....they found a large tumor at the same site my bowel had preforated a year before. Stage 3 colon cancer was not what i was expecting.
      (DUH guys, you missed something the past year, with all my complaining!)
      I went from colonoscopy, to surgery/resection to chemo within in a month. NO time to digest the diagnosis, no time to get your stuff straight, no time to heal. OH and let me add no paycheck, no significant other at home to support me and total dependence on family, when I am the independant one in the group!

      I love my surgeon, he's worked on me several times, so him sharing the diagnosis, was personable. I was still in the hospital and alone. My decision to go with a large onc group, was tough. I was afraid of getting lost in the numbers. That did not happen.

      Chemo has been interesting. Adjusting to tingles in fingers and toes, hair thinning out, loss of appetite, are all just obstacles I need to clear in order to be here for my grand daughters.

      I just finished 6/12 treatments. Only one set back, with blood counts, then allergic reaction to chemo drug in the office...
      what impact will this have on my prognosis? will they add another drug? And the ultimate question- why am I going through all this, if you removed all lymph nodes and got clear margins on the resection? and all scans have been clear....

      (please note-i did not share which drug i developed an allergy to, because I don't want to scare another newbie)

      over 4 years ago
    • roselind63's Avatar

      Hi phil,
      My first battle with colon cancer was what was expected.

      My second has been much tougher. I expect the same. Six months later , I was thinkin I would be done. To my surprise , I had to ask , didn't feel was getting any information. He tells me , the treatment stopped working. So, then we try a different drug.

      One year later still no change, or the tumor growing:( feeling frustrated, wanted to stop treatment. Which he did because of damage to my bile duct. It's been a month since my last treatment. In search of a second opinion. Cancer Treatment of America. Planning a trip , they sound more positive.

      over 4 years ago
    • abrub's Avatar

      Did my cancer journey go as expected?

      Not at all. After my appendix cancer was found unexpectedly during a “routine” hysterectomy, I was scheduled for follow-up surgery with a specialist. He was going to perform an exploratory laparascopy, placing a belly port for IP chemo if no further cancer was found. Predicted best case scenario was 4 days in the hospital, for the surgery and my first round of IP chemo (as I was coming from a long distance. Otherwise, it might have been outpatient, with me returning for chemo.) The worst case scenario predicted by my surgeon was that he’d find more tumor, have to do an open laparotomy, remove all tumor, and then place the belly port for IP chemo, with a maximum 10 day hospital stay. I was there for 28 days with multiple unusual complications following my laparatomy (more tumor was found.) I was sent home too weak to lift my head with an open wound in my belly from an incisional infection.

      IP chemo – supposedly just uncomfortable, bloating, but minimal side effects because it wasn’t in the bloodstream. In my case, blinding pain uncontrolled by high doses of narcotics. Dr stopped IP chemo after 5 of my planned 8 cycles because of concern of chemical peritonitis.

      Systemic chemo – port placement – normally a routine outpatient procedure. However, rare complications with the port, became an overnight stay in the hospital with a repeat placement in the morning.

      Also systemic chemo – my dr assured me that they could control the side effects. However, I had many of the rare side effects that are so uncommon dr’s don’t tell you about them. I stopped systemic after 7 of 12 cycles – I couldn’t tolerate it any longer.

      Side effects from chemo never completely resolved (4 years later) tho I was told that they usually disappear within 2 years. I developed an incisional hernia, and got to spend 5 more days at MSK for surgery – this time uneventful for a change.

      And yet, despite all the unexpected detours I took in my cancer journey, at 5 years post-diagnosis, I am doing great. I just came back from an evening kayaking. I bicycle. I curl (on ice.) I travel. I do everything, and am living a great life. I also didn’t expect this great a recovery. Yes, I had the worst 1 ½ years of my life after my diagnosis, but all is great now.

      over 4 years ago
    • PPaseka's Avatar

      So far my wife's journey has been a little better than we expected. We started out expecting them to do a full radical vulvectomy and they only did a partial on one side due to the tumor being deeper than anticipated. She never lost the hair on her head as we expected from first round of chemo. The radiation burns weren't near as bad as expected however she had bowel issues far worse than we ever imagined. Nearly five weeks of non stop diarehha. We really expected her to lose her hair from the second round of chemo being that they were giving her a full dose. We ended the iv chemo on April 5. She finishes her oral chemo (Xeloda) tomorrow without any of the expected side effects. We have her first post diagnosis scan sometime toward the end of June. Praying...

      over 4 years ago
    • steve70x7's Avatar

      I had a good laugh when I read your question. I wasn't laughing at the question as much as I was laughing at myself.

      Has your cancer journey gone as you expected it would go?

      Not once in my life did I ever ask myself, "I wonder how it will be if I get cancer?" It just happened! And there I was asking things like I have read others ask here on this site like:

      How am I suppose to be feeling?
      Am I handling this well or not?

      Mostly, I have been asking, "How's my wife handling this?"

      Now that I'm five months into the journey I can say, it hasn't been as bad as I expected. That is a great blessing!

      I thank God every day that my pain has been minimal, I'm not on chemo (yet) and I have great doctors (for the most part).

      One of the things that has really helped is that I started blogging about my experience, at: www.faithfulinthemeantime.wordpress.com It helps to get it out, even if no one else reads about it, but I hope someone does, because I truly want to comfort others with that same comfort I have received.

      Thanks for your question!

      over 4 years ago
    • jfahr's Avatar

      I would like to share with you the very challenging and sometimes hopeful journey we all took with our daughter who was diagnosed very unexpectedly at age 25 with colon cancer and then fought it for five years until it returned and was in her lungs to the point that she could not fight anymore and she passed away at age 31...these were years of learning, supporting, caring, and worrying about her but we were so appreciative of the resources she had, including very valuable health insurance...

      over 4 years ago
    • Effiemae's Avatar

      That's a good one. Since I never expected to get cancer in the first place (no history on either side of my family for generations back), my first reaction was total disbelief. Then came the anger, and boy did it come! I have never known many people who have had to fight this battle, but I did feel intense sympathy for them when I found out. How stupid I was, and how absolutely clueless I was to what they were feeling. And I am ashamed to admit I was glad that I wasn't the one who had it.

      I don't see how anyone can anticipate how fighting cancer will go. My main reaction has been that it is something you have to take day by day. There are good days, bad days, wretched days, and I still go through periods of denial. My oncologist told me that my there are two types of the cancer I have: Type 1 and Type 2. Type 1 usually does not metastasize, whereas Type 2 does and it's usually to the liver. I had my left eye removed two weeks ago, but the pathology and genetic reports haven't come back yet. I know for a fact that I will have to have scans every 6 months for the rest of my life, but other than that I do not want to know what type I have. Sometimes ignorance is bliss, and I figure if it is going to metastasize there is not one thing I can do to stop it. My doctor's advice to me was "Live life with gusto," and that's exactly what I am going to try to do. I know my journey is not over, and the unknown is the most frightening thing to me.

      about 4 years ago
    • LauraJo's Avatar

      My surgeon & oncologists told me that if everything went according to plan, this would just be a "bad year." Due to blood clot issues from my medi-port, it was actually a bad 13 months, but other than that, everything went pretty much according to plan. Side effects from the chemo & radiation were short-lived, and manageable, other than the continuing neuropathy in my feet.

      about 4 years ago
    • catherinemarr's Avatar

      My journey has been a nightmare,,,due to complications from surgury,,peritonitis,two months in hoospital,june-aug 2012,,,still not recovered may never recover muscle strength,,,but the good news is,nodes and polpys were all clean...just monitoring now

      almost 4 years ago
    • CHRISTINA71's Avatar

      Reading this has been helpful to try and explain where we are in my husband's journey. He found out at the age of 35 and has been fighting this terrible disease since 2009. This year has been the hardest. Originally we were told that he would do 5 wks of radiation, get an ileostomy, 5 weeks of chemo and would be done. We were even told at one point he was cancer free.... come to find out there were some nodes affected and one was not taken out but the surgeon said "they were not happy with how it looked" but could not remove it (not sure why) well that node has been an issue and the cancer has metastisized (there are lesions on the liver and lungs) he has done just about every chemo out there but none is removing that tumor. His ileostomy surgery was a nightmare... He was in the hospital for 30 days during Thanksgiving and Christmas. The reversal went well and we thought all was well but his dr just kept saying he did not like that one lymph node.. he did chemo for almost 2 years while the tumor just kept growing.. We switched doctors and has been doing more of the same. This October he had a blood clot in his right leg and was unable to walk until December and was recovering from that when the tumor grew and is now pinching a nerve causing him to not be able to walk again. My husband is one of the strongest people i know, he worked through chemo, radiation and as soon as he was recovered from the ileostomy he went back to work, he was always tinkering around the house... it pains me to see him in so much pain and alot of times i feel so helpless but i keep the faith. I have read several reports and quite honestly i dont care much what the doctors say i know its not in his or our hands. I just pray for the strength to help him through this. This has most definitely not been what we thought it would be actually like most people we never thought we would be going through this.. but here we are..I hope this new chemo works and he will be able to get some relief from his pain.

      over 3 years ago

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