Did anyone's cancer spread quickly. I need to find just one living person who had this experience

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Comments

  • Helen321
    Helen321 Member Posts: 1,459 Member
    smokeyjoe said:

    I think we all have the I
    I think we all have the I can't sleep, my brain is racing, I have to find something to get rid of this cancer so I can get back to living my life. When I had my first appointment after surgery with my oncologist I said to him "well colon cancer is slow growing isn't it?" He replied they had evidence mine was very aggressive. I suppose the pathology showed that. I have not had, so far, the rapid progression that they anticipated. I emphasize the SO FAR, all we can do is go scan by scan. Doctors cannot predict how your cancer will respond to chemo. or radiation. What works wonders on one person, may not work at all on another. I always figured radiation went in and fried cancer....I was shocked to find sometimes radiation has absolutely no effect on some cancer cells. I think your oncologist is going after killing the microscopic stuff you absolutely cannot see, along with shrinking the visible cancer.

    Hey Leena, I am having the
    Hey Leena, I am having the rapid progression so I need to know what they're doing and they're not there until Monday, so I can't get answers. I never heard of a hospital that says sorry we can't answer the question about the medication you're taking, you'll have to wait a week for that answer. I'm going there tonight, I'll find someone to answer my question. Heck, I would have taken a resident.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Cancer can spread quickly and you can live ...
    Helen, I know this is an understandably challenging and confusing time for you. You are doing the right thing to question and learn as much about your treatment options as possible. You seem like a very bright and feisty lady; your strong personality and preserving attitude will serve you well on your journey. As others have stated, the statistics you are reading are averages and by the time information is circulated on the web from a study or a paper it is likely outdated.

    Always remember that as you read the experiences and suggestions of others on this message board who has, or cares for someone with, colorectal cancer each individual circumstances is unique. The direction that this disease takes varies ... the progression of the disease, the side effects to the chemotherapy, the responses to treatment, and ultimately longevity. There are so many factors involved in one's individual health both before and after your diagnosis that affect response to treatment. This ambiguity is especially hard to grasp when you are newly diagnosed and are seeking specifics and concrete answers.

    I would encourage you to not take an adversarial role with your medical team. Now, that does not mean you do not question their role, seek answers to your questions, and be feisty when you have to be to advocate for yourself. I am just saying that they are not your enemy. I think they use the tools at their disposable to help you fight your disease the best they know how.

    The doctors want to both fight your disease but also preserve your health. That is confusing but what it means is that chemotherapy and radiation are very strong and powerful treatments which must be used sparingly so as to preserve your health to be able to fight your disease.

    As I understand from reading your messages you were diagnosed stage one and had a resection in March 2012 and then nine weeks later your scan showed reoccurrence and spread. This is not unlike my husband who after initial surgery had a quick recurrence not only in the original area but also had spread to simultaneously to the liver and lungs .... like you, we ask, how could this possibly happen?

    Cancer cells can only be viewed by cat scans or pet scans when they are at a certain size. There can be microscopic cells floating throughout the body both before and after surgery that are not and cannot be removed by the surgery and can cause reoccurrence or mets. It would seem that both in your case, and my husband's, that microscopic cells were present that could be seen and thus not removed that resulted in your reoccurrence. When tissue is resected during surgery the margins are tested until they are clear and this is how they deem they have resected enough. I feel through you research you are undoubtably aware of this and forgive me if I am being too simplistic in this explanation.

    My husband had recurrence after his stage one diagnosis and it quickly became stage four with mets to his liver and lungs after his initial surgery. Has he lived longer than 18 months? YES! He is now in his 31st month since his recurrence and mets. He has been having chemotherapy, with some breaks, the entire 31 months. He is 71 and has worked the entire time just retiring this past month. His blood work and vitals have remained good and so has his quality of life.

    Helen, you can do this. Trust yourself, but also trust your medical team. Hang tough and breathe.

    Thank you, you actually just
    Thank you, you actually just answered my question! Your simplicity was exactly what I needed because all I've been getting from Sloan is "it's very aggressive". Over and over, "It's very aggressive". When I ask questions the answer is always we don't know if it's new or old. They just won't say that it is possible another hospital didn't catch something even if it wasn't their own doing but a scan that couldn't pick it up. I actually feel better. That's two people that have the same issue. I just needed to hear that this happened to someone and they're alive to tell about it. The stats I am reading for aggressive progression are actually very recent and not good. 18 months average. I'm 42 with three kids and about to be a grandma. Those stats blew my mind. Started my chemo. Checking out for the week from the board. My head hurts more than when I signed on this morning=) Thanks for the info and for the actual answer to the question.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Oh gosh, Helen,
    I can hear the fear in your "voice" and I'm so sorry for it. I remember all too well what that felt like. I have a very aggressive cancer, and I'm still here three years out and doing very well, so it can be done! My tumor type is so unusual (esp in the colon) that my doctor had absolutely zero information to go on, not even a single study (there are only about twenty documented cases worldwide). I've had multiple node involvement, as well as several tumors in the small intestine, rectum and uterus. So i guess i just want to reassure you that even with a quickly spreading cancer things can be ok. I do think things will feel more positive once treatment starts (whichever plan you go with) and you are actively fighting this beast. Hugs-Ann

    First fear, now frustration.
    First fear, now frustration. I'm looking for Sloan to give explanations, not just say hey this is what we're doing. Why do I have to come to the board to find out that it can be in your lymphs for a long period of time and not get picked up by scans.They just keep saying over and over "it's very aggressive". That is not answering my question! At our next meeting I will say add a note to your chart, none of you should say the words "it's very aggressive" unless it's followed by "but this could be happening because". Add to that the whole team is on vacation this week and my question has to wait until Monday bc the fill in won't answer it. Well someone here just did. I was just looking for people who had this situation. You make three and you're all past 18 months so now I can relax, get off the boards and eat my soup=) Thank you.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Helen321 said:

    First fear, now frustration.
    First fear, now frustration. I'm looking for Sloan to give explanations, not just say hey this is what we're doing. Why do I have to come to the board to find out that it can be in your lymphs for a long period of time and not get picked up by scans.They just keep saying over and over "it's very aggressive". That is not answering my question! At our next meeting I will say add a note to your chart, none of you should say the words "it's very aggressive" unless it's followed by "but this could be happening because". Add to that the whole team is on vacation this week and my question has to wait until Monday bc the fill in won't answer it. Well someone here just did. I was just looking for people who had this situation. You make three and you're all past 18 months so now I can relax, get off the boards and eat my soup=) Thank you.

    Last summer my oncologist
    Last summer my oncologist was on vacation, another young female onc. saw me, she was quite short with me it's in your lymph nodes so sorry, you'll have to stay on chemo. I think I was asking about a chemo. break or something. But, her attitude was too bad. Actually she brought up about scanning me more often than the three month schedule my onc. was doing. I said, you can do that??? The next set of scans and onc. appt., again my usual oncologist was not there, and I saw again a different oncologist, I was feeling the fatigue and he lowered my chemo. to 75%, what a huge difference it made immediately, not only on the fatigue but also the burning butt issue. Anyhow,3 different oncs., all three within the same facility, treating it differently.
  • Varmint5
    Varmint5 Member Posts: 384 Member
    Helen321 said:

    First fear, now frustration.
    First fear, now frustration. I'm looking for Sloan to give explanations, not just say hey this is what we're doing. Why do I have to come to the board to find out that it can be in your lymphs for a long period of time and not get picked up by scans.They just keep saying over and over "it's very aggressive". That is not answering my question! At our next meeting I will say add a note to your chart, none of you should say the words "it's very aggressive" unless it's followed by "but this could be happening because". Add to that the whole team is on vacation this week and my question has to wait until Monday bc the fill in won't answer it. Well someone here just did. I was just looking for people who had this situation. You make three and you're all past 18 months so now I can relax, get off the boards and eat my soup=) Thank you.

    Helen!
    I feel your panic. Wish I could help. I personally know a woman who had aggressive stage IV colon cancer 14 years ago and she is cancer free now, has been for many years. They are out there - MOST people do not come on these boards, the people here are a small sampling of actual patients. THANK GOD they are all here, but many cancer patients are not, are nowhere to be found on the internet. My daughter certainly isn't on here researching her cancer - I'm the one doing it. Friends of mine were the same way - put their trust in their doctors and thought about the cancer only when forced to.

    One thing to keep in mind as you enter your treatment - rapidly dividing cells ("aggressive," "poorly differentiated," "high grade," etc.) often respond very well to chemo. Rapid cell division = rapid cell death. Happens a lot. One oncologist told me years ago that sometimes the slower growing cancers are more resistant to chemo.

    So try to think of your "aggressive" tumors spending all their energy on reproducing so they'll have none left to resist the chemo and it will be BAM! (as Emeril says) to those nasty cells - instant DEATH - and your bloodstream will wash them out of your body. Visualize that! Can't hurt.

    Best wishes to you.

    Sandy
  • ron50
    ron50 Member Posts: 1,723 Member
    Helen321 said:

    Thank you Ron, you're the
    Thank you Ron, you're the guy I'm looking for. Okay so it has been done. Because EVERYONE on the internet who has aggressive adenocarcinoma can't post for themselves and has a loved one posting the "news". Mine is also being frightfully aggressive. I just took first round of chemo, will have infusion later today. Did they do chemo for you for 5-1/2 months first? I feel like that is begging it to continue spreading. I would rather have done the chemo/rad first like we planned. Doctor says no. Australian study (with a hospital Sloan seems to buddy with in Australia, it would be funny if it is yours) says this is better. The docs were visiting from Australia so I got to meet them. BTW, I officially love you Ron! More than you'll ever know.

    Hi helen
    My cancer was colon . I did not have the option of radiation ,colons are hard to target. I was started on chemo three weeks after I got out of hospital. I had the full incision from sternum to groin. My surgeon said he even felt my liver with his hands he was so sure it would have mets. The chemo I started on ,5fu//leucovorin nearly killed me my reaction to it was so severe,literally non stop diahorreah. I was changed to an old regime of 5fu and levamisole weekly from jan to late nov 98. I have had so many scans since that I glow in the dark and with colonoscopies ,at one stage I suggested they just lay down a track and park the rotten thing somewhere in there. I have had quite a few polyps removed over the years but still remain ca free. For the first time in my life I am out to 3 yearly scopes. I do believe that the more aggressive the ca the higher the impact chemo has on it. Ron.
  • dmj101
    dmj101 Member Posts: 527 Member
    I can relate to your
    I can relate to your thoughts. I am the same way.. you want to be prepared..
    Though Danker is telling you to go with the flow.. I don't think I disagree..
    You could be making yourself sick over this..

    Over analysis causes paralysis..

    I am with you dear .. do all the research you need to do. but please try to weight it with what your docs are saying..

    My cancer was rectum .. I did the chemo/rad then surgery than 12 cycles of FolFox.. my colon is clean- now I have mets and doing Folfiri and Vectibix..

    Was mine agressive.. no one ever used that word but to me it was I had a pet CT in 2009 and there was nothing there.. than a year later in 2010 I had a stage 2/3 rectal cancer hmmm kind of strange..

    Helen, I hope you find your answers and peace.. and please let us know what goes on..

    You were goig to Montefiore for a 3rd opinion.. did you go yet.. what did they say?

    Hugs... Donna
  • taraHK
    taraHK Member Posts: 1,952 Member
    Just a thought
    Others have given very useful comments. Just a thought from me: I think of radiation as zapping an individual tumour -- reducing the size or hopefully completely eliminating. I think of chemo (which is described as 'systemic') as attacking multiple tumours (if one has them) -- and also attacking the micrometasteses (sp?) which may be floating around one's body (unfortunately!). I don't know if that is helpful at all....

    That being said, I think 'enrolling' your family to explore options/do 'research' is a great idea....

    Tara
  • omrhill
    omrhill Member Posts: 125
    Looking for an answer
    Helen - we can feel the frustration in your posts. And your search for answer. Ifi can make a recommendation? Approach your doctors with your list of questions rather than accusations. I suspect that they are not withholding info intentionally but may just not be able to anticipate all the questions you will think of between appointments. I know for me there was so much to learn at first it was impossible for me to even know what to ask. Also ( and i think someone earlieer said it really well) the doctors are your best resource for info about your specific condition. We love you and want to help, but our first response may be to boost you up and tell you only what you want to hear. Having confidence in and trust in my medical team gives me hope and rest. In the end, if you really don't have that, perhaps you should consider finding someone you can trust.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Varmint5 said:

    Helen!
    I feel your panic. Wish I could help. I personally know a woman who had aggressive stage IV colon cancer 14 years ago and she is cancer free now, has been for many years. They are out there - MOST people do not come on these boards, the people here are a small sampling of actual patients. THANK GOD they are all here, but many cancer patients are not, are nowhere to be found on the internet. My daughter certainly isn't on here researching her cancer - I'm the one doing it. Friends of mine were the same way - put their trust in their doctors and thought about the cancer only when forced to.

    One thing to keep in mind as you enter your treatment - rapidly dividing cells ("aggressive," "poorly differentiated," "high grade," etc.) often respond very well to chemo. Rapid cell division = rapid cell death. Happens a lot. One oncologist told me years ago that sometimes the slower growing cancers are more resistant to chemo.

    So try to think of your "aggressive" tumors spending all their energy on reproducing so they'll have none left to resist the chemo and it will be BAM! (as Emeril says) to those nasty cells - instant DEATH - and your bloodstream will wash them out of your body. Visualize that! Can't hurt.

    Best wishes to you.

    Sandy

    Nicely put! I never thought
    Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Varmint5 said:

    Helen!
    I feel your panic. Wish I could help. I personally know a woman who had aggressive stage IV colon cancer 14 years ago and she is cancer free now, has been for many years. They are out there - MOST people do not come on these boards, the people here are a small sampling of actual patients. THANK GOD they are all here, but many cancer patients are not, are nowhere to be found on the internet. My daughter certainly isn't on here researching her cancer - I'm the one doing it. Friends of mine were the same way - put their trust in their doctors and thought about the cancer only when forced to.

    One thing to keep in mind as you enter your treatment - rapidly dividing cells ("aggressive," "poorly differentiated," "high grade," etc.) often respond very well to chemo. Rapid cell division = rapid cell death. Happens a lot. One oncologist told me years ago that sometimes the slower growing cancers are more resistant to chemo.

    So try to think of your "aggressive" tumors spending all their energy on reproducing so they'll have none left to resist the chemo and it will be BAM! (as Emeril says) to those nasty cells - instant DEATH - and your bloodstream will wash them out of your body. Visualize that! Can't hurt.

    Best wishes to you.

    Sandy

    Nicely put! I never thought
    Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Varmint5 said:

    Helen!
    I feel your panic. Wish I could help. I personally know a woman who had aggressive stage IV colon cancer 14 years ago and she is cancer free now, has been for many years. They are out there - MOST people do not come on these boards, the people here are a small sampling of actual patients. THANK GOD they are all here, but many cancer patients are not, are nowhere to be found on the internet. My daughter certainly isn't on here researching her cancer - I'm the one doing it. Friends of mine were the same way - put their trust in their doctors and thought about the cancer only when forced to.

    One thing to keep in mind as you enter your treatment - rapidly dividing cells ("aggressive," "poorly differentiated," "high grade," etc.) often respond very well to chemo. Rapid cell division = rapid cell death. Happens a lot. One oncologist told me years ago that sometimes the slower growing cancers are more resistant to chemo.

    So try to think of your "aggressive" tumors spending all their energy on reproducing so they'll have none left to resist the chemo and it will be BAM! (as Emeril says) to those nasty cells - instant DEATH - and your bloodstream will wash them out of your body. Visualize that! Can't hurt.

    Best wishes to you.

    Sandy

    Nicely put! I never thought
    Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    ok i have had a few late night researching
    so what did i learn, well heaps, but the most important thing for good living for me now is a
    good nights sleep.

    thats asleep before 10pm, what you learn from the net, from us here, from your medical doctors , just sit on it a while and trust your intuition. thats the only advice i can give, its what i am doing.

    its great to get buried in the detail of our cancer, but sometimes its better for me to step back, a few steps and take in the big broad picture of how wonderful our life is, yes its precious and the guarantees well i lost mine when i got dx'd.

    so step back and smell the roses, make your decisions. we all have a lifetime of moments, hopefully heaps of moments with lots of love. make the best decisions you can and be at peace with them, no regrets. i don't and i have made a few mistakes on my treatment path.

    if the study is from australia it must be blooody fantastic, thats all i can say. we are so smart down under.

    many replies here have addressed the details of your question, i however want to point out the obvious. you are the person you are looking for.

    hugs,
    pete

    ps i hope you have your beautiful smile happening when you read this! hugs!