25 years cancer free but now....?

joet2018
joet2018 Member Posts: 3
edited February 2022 in Long-Term Survivors #1

Hi all, I am a 56-yr-old male and this goes out to all cancer survivors. I had Hodgkin's lymphoma in the late 80s/early 90s, with surgery, radiation and chemo treatments. Then I was in remission/cure for 25 years. Last year, on the actual month of my 25th anniversary of being cancer free, a scan being done for something else turned up lymph nodes in my pelvis and abdomen. Since then, I have been monitored with scans at 6 month intervals. My latest scan was a couple of weeks ago, and showed absolutely no change, the lymph nodes, which are about one centimeter, have not gotten larger and no new ones. The oncologist has gone back and forth on recommending a biopsy, now she says we can continue to monitor. She says its either nothing, or a very slow-growing, very non-aggressive, form of lymphoma.
I believe what they are seeing could be scar tissue or some other remnant from my previous treatment, but they can't seem to find any of my older scans from after my chemo was finished.
This has been very stressful to me, as bad or worse than when I first went through cancer diagnosis, or when I had my recurrence of Hodgkin's 25 plus years ago. I had always thought that if I ever got cancer again, I would handle it better because of my "experience." But no, its actually worse.
I am incredibly grateful for the 25 cancer free years, and hopeful this is just a blip. But it has been very difficult, leading to insomnia, anxiety, etc. I have felt very isolated and alone since this has been going on, even though I have wonderful family and friends. 
I thought it might be helpful to hear from other long-term survivors about how they may have handled similar issues, or just to talk it out with others who have been through some of the same things as me.
Sorry for the long-winded post....

Comments

  • ron50
    ron50 Member Posts: 1,723 Member
    #2
    Hi Joe

       I can relate, I am out over twenty years post stage 3 colon cancer. I had surgery and 48 sessions of chemotherapy. I was scheduled to have a colonoscopy in November 2016. I aeemed to get lost in the system and I eventually had my scope in april 2017. The gastro doctor asked why are you bothering anymore , you have had no sign of cancer for over 19 years. I just said check me CAREFULLY. when I woke up he looked like he did not even want to talk  to me. He had removed four tubular adenoma polyps from my colon , the largest 11mm. Iwas lucky again , although they all had some degree of displaysia none were cancerous. The fear of recurrence never goes away and I believe that we survivors should never let their guard down. I think I would be asking for a biopsy, Best wishes Ron.

  • joet2018
    joet2018 Member Posts: 3
    #3
    ron50 said:

    Hi Joe

       I can relate, I am out over twenty years post stage 3 colon cancer. I had surgery and 48 sessions of chemotherapy. I was scheduled to have a colonoscopy in November 2016. I aeemed to get lost in the system and I eventually had my scope in april 2017. The gastro doctor asked why are you bothering anymore , you have had no sign of cancer for over 19 years. I just said check me CAREFULLY. when I woke up he looked like he did not even want to talk  to me. He had removed four tubular adenoma polyps from my colon , the largest 11mm. Iwas lucky again , although they all had some degree of displaysia none were cancerous. The fear of recurrence never goes away and I believe that we survivors should never let their guard down. I think I would be asking for a biopsy, Best wishes Ron.

    Hi Ron

    I may end up getting the biopsy, but I really don't want to have a large needle stuck in my body unless I really have to.  Right now, I am focused on being better able to deal with my medical issues without getting so stressed out.  You are so right that the fear of recurrence never goes away, you think it would over 20 or 25 years, but no.  I am really happy for you having 20 years cancer free and that your latest colonoscopy showed no cancer.  That must be a huge relief. How often will you continue to be checked out?  Sounds like the doctor you saw was not very supportive.  Maybe find another? Thanks for responding to my post, and good luck to you.  Joe

  • ron50
    ron50 Member Posts: 1,723 Member
    #4
    Hi Joe

                Sometimes after bouts of serious illness you you come to conclusions that doctors don't agree with. The surgeon who removed my original cancer told me that it was a very nasty one ,frightfully aggressive was how he described it. He told me straight out that it would kill me and that I had a max of three years. I said he was wrong. I don't die from cancer. He thought that was quite funny and said I hope you are right but I fear you are wrong. My april scope, I knew there was something amiss. We had a long talk when the GI discharged me and he said I would never go beyond two years again for scopes.  Survival has not been easy for me. One of the chemo agents I ws on ,levamisole, was banned a few years after I was on it for often fatal side effects. I have auto immune nephrotic syndrome of the kidneys. Untreated I lose up yo 8 grams a day of protein thru my urine . I take cyclosporine twice a day to keep it in check. Talking about big needles , I have had three kidney biopsies. All have shown problems but none that relate to any known kidney disease. My first nephrologist just guessed a dx and had me on high dose steroids for over two years. It did not help the protein loss but did put me into type two diabetes. I have since been dxed with sronegative  poly arthritis (auto immune) auto immune hepatitis . I have also had acute pancreatitis and lost my gallbladder. I am 67 now and still work four days a week. When they ask my profession I just answer SURVIVOR. Ron.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #5
    ron50 said:

    Hi Joe

                Sometimes after bouts of serious illness you you come to conclusions that doctors don't agree with. The surgeon who removed my original cancer told me that it was a very nasty one ,frightfully aggressive was how he described it. He told me straight out that it would kill me and that I had a max of three years. I said he was wrong. I don't die from cancer. He thought that was quite funny and said I hope you are right but I fear you are wrong. My april scope, I knew there was something amiss. We had a long talk when the GI discharged me and he said I would never go beyond two years again for scopes.  Survival has not been easy for me. One of the chemo agents I ws on ,levamisole, was banned a few years after I was on it for often fatal side effects. I have auto immune nephrotic syndrome of the kidneys. Untreated I lose up yo 8 grams a day of protein thru my urine . I take cyclosporine twice a day to keep it in check. Talking about big needles , I have had three kidney biopsies. All have shown problems but none that relate to any known kidney disease. My first nephrologist just guessed a dx and had me on high dose steroids for over two years. It did not help the protein loss but did put me into type two diabetes. I have since been dxed with sronegative  poly arthritis (auto immune) auto immune hepatitis . I have also had acute pancreatitis and lost my gallbladder. I am 67 now and still work four days a week. When they ask my profession I just answer SURVIVOR. Ron.

    ron50, I have read your posts

    ron50, I have read your posts for the years I have been on the board and wanted to say how good it is to hear you share your experiences.  This journey is not easy, you are one who has had a difficult road, but you are still here to tell us how to fight.  Still working four days a week?  Wow.  Good for you.  I hope you still get to enjoy your fishing - which your picture shows you are quite the fisherman.  God bless you and thank you for continuing to be a support to those newbies who, no doubt, are overwhelmed and lost.

  • wetmittens
    wetmittens Member Posts: 2
    edited September 2018 #6
    Hi Joe.  I am a 37 year

    Hi Joe.  I am a 37 year survivor of Hodgkins Disease.  I have calcified lymph nodes in my neck from the treatment.  I am hoping the same for you.  Good luck

  • jennerrator
    jennerrator Member Posts: 10
    edited April 2019 #7
    Wow....Amazing what we can go through!

    I just joined today..I thought this would be a busy board but then I had to remember it's not a great part of life...but it's survivorsSmile

     

    I had type 1A of small-cell lung cancer that was found by accident..but thank God it was..I had it removed only and went on with life. Until 4 years later, January 30, 2018...I ended up having brain cancer stage 4 removed and I'm over a year since. The lung sent a red blood cell to my brain and here we are. I am still dealing with things but, I'm back at work and staretd back towards my degree. Life has changed quite a bit but I stay nothing but positive...as in my eyes, I got tons of life left!

     

    I hope everyone that's been through this in life just stay positive and enjoy life no matter what!

  • rrandy75
    rrandy75 Member Posts: 2 *
    #8

    "we'll just deal with it again"

    a friend once said that to me over a bus trip during our treatment. She was a brain cancer survivor, and was taking care of her husband who was a lymphoma survivor and then having leukemia. We just had to set our mind to fight this new war, and it was in some aspects different from the previous ones, especially with extra burdens left by previous treatments, physically, mentally, financially..

    anyway we just carried a mindset of fighting a new fight, see where we stood and fight from our new standpoints, just accepted it as another stage of our lives, trying to stay focused on healing, trying to stay positive, count our blessings and enjoy what's left for us to enjoy

    best wishes for you and we hope you have the best outcome possible

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