Understanding lab and pathology results better

Options

Hello everyone;

 

My wife had a small orange size mass removed from her colon a month ago, the pathology came back saying the tumor was cancer (20 of the 24 lymph nodes came back cancerous as well).  The Oncologist stated she has stage 4 cancer and once she heals from her surgery we would start chemo.  His plan was to approach the cancer with very aggressive chemo treatment.  At the time he stated the cancer most likely has spread to other organs but we will have a better clue once a PET scan is done.  Before I get to the PET Scan I need to go back to her surgery, the surgeon advised us when she removed the tumor which was located where the Large Intestine meets the small intestine at the caecum, she noticed the following.  One my wife had numerous cysts on her liver but felt they were benign; she had a white lining on her stomach, not sure if it was cancerous and she removed 24 lymph nodes to be tested.  One last thing she felt she got the entire tumor around the intestine.  Now we have moved up to the Pet Scan, when the results came back the oncologist said it was very positive, it appears her cancer was localized and it did not spread, the liver had 21 cysts and they were all benign, she had to unknown masses one in the upper chest the other in her intestine, the results came back could be cancer or nothing, the PET Scan could determine what they are, the doctor stated most likely nothing.  He stated she still had some cancer in the lining of her intestine and small cancer around her aorta, but felt chemo will handle what she has.  I asked since she received such a great PET Scan, why are you still saying she has stage 4 cancer, He said because the size of her tumor and there is a small patch in her intestine lining.  He said she will still have the same chemo treatment.  Her treatment is every other week for 6 months.  She has had one treatment.  It last about 3 and half hours with 3 different types of drugs, but one of them was more of a steroid.  She also had to wear a fanny pack with a pump which pumped more chemo in her for 48 extra hours.  Just went to doctor today for follow up and blood work.  My wife had her first treatment last Monday and she has had very little side effects, only minor fatigue.  Her blood today came back with WBC at 15.2, which the DR said not to bad, Neut% was 67.4 and Neut# was 10.3, lymph% was 14.3, mono% was 14.8 and mono# was 2.26.  Now I only listed what came back outside the normal limits.  I do not know what these mean, except the doctor says they are fine and nothing to worry about.  I just wish I knew what these mean and if I should be alarmed. He said she is doing very well and after 6 months she will beat this and will be 100% cancer free.  One, I love his enthusiasm but I do not think any of us know yet, but I hope he is right.  Two what I have read and talking to many people who have been diagnosed with stage 4 colon cancer it is not as rosy as the oncologist is making this sound.  Please don't take this wrong I love my wife and I want her around another 30 years ( I forgot to say she is 66 years old) but I just want to make sure we are being told the truth and if there is anything else I need to be looking out for.  Please help me understand what I am looking at and maybe I am not asking the right questions to the Oncologist.  I hate my feelings and I want to get them under control.  I need to work but I do not want to leave her side but I know I will have to.  But some days I am sad and cry, somedays I am mad, others I am depressed, and others I am just worn out.  I think if I had a better understanding I may eliminate some of these feelings.  I hope someone has an answer to help me…

Comments

  • John23
    John23 Member Posts: 2,122 Member
    Options
    Scans and tests...

    Scans and tests...

    You will be better off taking things as they are explained to you and not attempting to "read into" any if it.

    The initial diagnosis and resultant staging does not change with the condition as time progresses. If you are a stage one and have a recurrence with cancer spread throughout the body you are a stage one with metastases. If you are a stage four at the start, you remain a stage four. After ten years of a clean, cancer free life, they may classify you as "cured". That does not happen often; it is rare.

    A stage four can see a long life, depending on many variables, and no variable is conclusive.

    It appears that the treatments and attention she is receiving is well attended to, and much better than most receive.

    Try to live in the moment and make the very best of life you can, while you can. Try not to read into data that you do not understand; it will be a lesson in futility and bring nothing but needless worry.

    Be well, she need you to be well.

    My best wishes for you both,

    John

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited May 2016 #3
    Options
    I lost my long response to

    I lost my long response to typing in the dark, my bad. In essense I agreed with John's viewpoint. Stay in the moment, and be what your wife needs you to be, positive and strong. Your doctor expects the best outcome, and I'd have no reason to doubt him. I wish I had him instead of some of the pokerfaces I've dealt with, trying to figure by every little gesture, what they were thinking. You're a month into this, and it's a scary, fast moving time, my mind and emotions were all over the place. Xanax helped me settle down a bit, others could do it with forms of meditation, but things do calm down with time. Go to work, I've done both sides of this, and my wife and I needed alone time, even from each other. You'll learn what you need to know, forget statistics and charts, they're worse than useless, and lab results can mess with your head, unnecessarily. This journey goes on and on, up and down, so try to slow your mind, and find the things you two like to do, and do them, do more of them. And let us know how things go..........................................Dave

  • malbin0259
    malbin0259 Member Posts: 6
    Options
    John23 said:

    Scans and tests...

    Scans and tests...

    You will be better off taking things as they are explained to you and not attempting to "read into" any if it.

    The initial diagnosis and resultant staging does not change with the condition as time progresses. If you are a stage one and have a recurrence with cancer spread throughout the body you are a stage one with metastases. If you are a stage four at the start, you remain a stage four. After ten years of a clean, cancer free life, they may classify you as "cured". That does not happen often; it is rare.

    A stage four can see a long life, depending on many variables, and no variable is conclusive.

    It appears that the treatments and attention she is receiving is well attended to, and much better than most receive.

    Try to live in the moment and make the very best of life you can, while you can. Try not to read into data that you do not understand; it will be a lesson in futility and bring nothing but needless worry.

    Be well, she need you to be well.

    My best wishes for you both,

    John

    Thanks John for your input and insight. I just keeping feeling I can do more.  Also I hate to appear to be negative, I do not want to, but many things run through my mind, and cancer runs in her family.  Yes they died from this but they were in their 80's and 90's when they attracted cancer so most likely not a good comparison.  I saw both of my parents and 4 aunts and uncles die from cancer as well as my old boss and 3 clients. Cancer does not leave a pretty vision in my mind.  I guess what I am saying to me cancer has only meant death and it is hard for me to get this out of mind and it scares me every day that I can lose my wife who is so full of life and is my glue.

     

    Again thank you for writing to me and I am most likely overly cautious or maybe downright ridiculous on how I feel  but I do not know how to relax and say everything will be fine... 

  • malbin0259
    malbin0259 Member Posts: 6
    Options

    I lost my long response to

    I lost my long response to typing in the dark, my bad. In essense I agreed with John's viewpoint. Stay in the moment, and be what your wife needs you to be, positive and strong. Your doctor expects the best outcome, and I'd have no reason to doubt him. I wish I had him instead of some of the pokerfaces I've dealt with, trying to figure by every little gesture, what they were thinking. You're a month into this, and it's a scary, fast moving time, my mind and emotions were all over the place. Xanax helped me settle down a bit, others could do it with forms of meditation, but things do calm down with time. Go to work, I've done both sides of this, and my wife and I needed alone time, even from each other. You'll learn what you need to know, forget statistics and charts, they're worse than useless, and lab results can mess with your head, unnecessarily. This journey goes on and on, up and down, so try to slow your mind, and find the things you two like to do, and do them, do more of them. And let us know how things go..........................................Dave

    Dave:

     

    Thank you for getting back to me and letting me know what to expect.  One thing we did was plan a cruise in December to celebrate as her chemo ends at the end of September. One bit of advice we continue to get is to live today and in the moment which we are trying to do, but some days I wonder.  What is hard, my wife retired and 2 weeks later her retirement gift was cancer.  Once she retired our plan was for her to travel and see her friends and our kids and if I had a business trip close to where she was visiting we would meet up.  Since the cancer is new she does not feel up to doing this as I guess the biggest side effect is she gets worn out around mid-day and needs to take a nap.  I am trying to stay positive but sometimes it is hard when there is no one to talk to about how I am feeling.

    Mike

  • John23
    John23 Member Posts: 2,122 Member
    Options

    Thanks John for your input and insight. I just keeping feeling I can do more.  Also I hate to appear to be negative, I do not want to, but many things run through my mind, and cancer runs in her family.  Yes they died from this but they were in their 80's and 90's when they attracted cancer so most likely not a good comparison.  I saw both of my parents and 4 aunts and uncles die from cancer as well as my old boss and 3 clients. Cancer does not leave a pretty vision in my mind.  I guess what I am saying to me cancer has only meant death and it is hard for me to get this out of mind and it scares me every day that I can lose my wife who is so full of life and is my glue.

     

    Again thank you for writing to me and I am most likely overly cautious or maybe downright ridiculous on how I feel  but I do not know how to relax and say everything will be fine... 

    Mel....

    Mel....

    Re:
    "I am most likely overly cautious or maybe downright ridiculous on how I feel  but I do not know how to relax and say everything will be fine... "

    You are never ridiculous when it comes to feelings, or love.

    And you can't relax with a thought that "every thing will be fine", because it rarely works out that way. Cancer is tough; it's tough to beat and not many do.

    There's a long standing world-wide statistic that indicates that with all cancer types combined, there is a 2% lifetime survival rate. That's bleak. But there are many that live years with cancer, long into old age, and well beyond any prognosis. My Mother had lung cancer and survived almost 18years beyond her prognosis; the cancer recurred during her geriatric years, most life spans run short of hers...

    Reason to worry about losing a loved one? Of course. But worry doesn't fix anything. And denying that there can be a bad ending isn't going to hack it either. It's not easy to face, not for the patient, and not for ourselves when we're the one carrying the expiration date. Cancer is the pits; it is akin to watching a 911 video in slow motion, only we're in it.

    The best thing, is to accept the worst case possibility, and hope for the best.

    Your wife appears to be getting great care, much better than what most of us have received (or are getting). There are many diets and holistic remedies available, but of no proven benefit. As long as it's not expensive and a drain on the wallet, if it sounds like something to try, try it. But never go crazy with the hyperbole of the market, there is no known "cure".

    Never believe that drinking some treated water, or ingesting some mistletoe oil at $90 a ml is going to be of great use. Worry, and do what you feel you need to, but never allow fear to steer you.

    Click on the various members moniker here and read their profile, it might shed some light and be of help.

    It's a tough road, but you'll make it. Your wife sounds like she's in good hands.

    I'm not a religious guy, but I have my moments, and pleading isn't out of the question.

    Be well; my best to you both.

    John

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Options

    Dave:

     

    Thank you for getting back to me and letting me know what to expect.  One thing we did was plan a cruise in December to celebrate as her chemo ends at the end of September. One bit of advice we continue to get is to live today and in the moment which we are trying to do, but some days I wonder.  What is hard, my wife retired and 2 weeks later her retirement gift was cancer.  Once she retired our plan was for her to travel and see her friends and our kids and if I had a business trip close to where she was visiting we would meet up.  Since the cancer is new she does not feel up to doing this as I guess the biggest side effect is she gets worn out around mid-day and needs to take a nap.  I am trying to stay positive but sometimes it is hard when there is no one to talk to about how I am feeling.

    Mike

    I get it. My wife's reward

    I get it. My wife's reward for working hard, raising 5 kids, and caring for me for 16 months after my crc was discovered, was a stage 4 Glioma above her left ear. What ever dreams of travel or any kind of retirement, went out the window and into our $5000 a month co-pay. The prognosis for her tumour was terrifying, survival averaged 11 months then, Ted Kennedy got it around the same time and lasted about the average. She was 47, and strong enough to last 6 1/2 good years, and 1 really rough one. So I do know the horror of watching the love of your life fight this awful crap, and then not even being able to tell anyone what your going through, because you can't stay composed long enough to get the words out. That's why this blog works so well for me, I can type and cry at the same time. Anyway, with time and treatment, hopefully your wife will find the energy to join you on those trips. Cindy and I had to work around some tough obstacles, but we did get out, had some trips, enjoyed the kids and grandkids, and especially each other. The upside of this awfulness was the closeness we shared, whether in a hospital room or on the wharf in San Fran, being together was what mattered. Hang in there, Mike, and share whatever you feel, nobody here is going to have anything but empathy and understanding.......................................Dave

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited May 2016 #8
    Options
    Mike, I honestly think inmany

    Mike, I honestly think inmany ways it's harder on the caregiver than the patient. One of the things I'm grateful for is that it was me that got the cancer, not my husband. I could not have been as strong and supportive as he has been. He's not perfect, he's had his moments, but he's been amazing through the last two and a half years we've been dealing with this. You can do it, too, but it's really hard. You're going to have to be compassionate about her feelings and the things she's going through without collapsing into despair. It's a hard balance to make. You need to be strong enough to be the positive one but at the same time not sound dismissive. I don't envy you.

    Regarding your history of cancer in the family please remember a few things. One is that they've actually made great strides in many cancer treatments. Many cancers that were fatal years ago are not necessarily so now. Another is to listen to people who know, don't read about it on line. The information is often old or biased. The members on here tend to be very pragmatic and helpful and can easily talk you down when you think everything is going to hell. Trust her doctors. If the doctor sounds like he/she is pretty confident, go with that unless you're really questioning a treatment. But if they think things will be okay, trust in that as much as you can. I say this because while we don't want to have blind faith, stress is the enemy for a person fighting cancer and they need all the positive thoughts they can get.

    I have a wishy washy oncologist that I hate going to see because of this and a confident surgeon that I love going to see. Some people think he's arrogant. He said he was going to go in and take my cancer out and he did. That's what I want.

    Try to live in the moment. It will get easier as time goes by. At the beginning I think most people can think of nothing else. Eventually you learn to live with the diagnosis and how it affects your life. Like anything else.

    Jan

     

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited May 2016 #9
    Options
    Welcome to the forum

    But some days I am sad and cry, somedays I am mad, others I am depressed, and others I am just worn out.  I think if I had a better understanding I may eliminate some of these feelings.  I hope someone has an answer to help me…

    Hello, and welcome to the forum. 

    It sounds to me like you have a pretty good understanding already, its just that you are looking for more undrestanding. At this point in the game, I think you have to have faith in your wife's Oncologist, or find a new one.  All of the other feeling you expressed are normal. They will ease as time progresses, but they will always be there. 

    I am pretty sure that the Oncologist would be truthful to both you and your wife, though saying she will be 100% cured in six months it probably not a good idea. I don't think they are in the habit of beating around the bush. Nothing gets solved that way.

    They are fighting it aggressivly because of the large number of lymph nodes involved and the spread to the aorta. Any time the cancer moves out from the colon and into another organ, it is classified as stage IV. 

    The chemo she is recieving sounds allot like mine was.  I am glad they are watching her closely. I had my chemo set back three times, once for low red cell count, once for low white and once for low platelets. 

    That really is allot of cysts in the liver. They will keep a keen eye on them, I am sure. 

    Having such a supportive, loving husband will carry your wife a long, long way. Be strong for her, be strong for yourself. 

    SUE

  • Phil64
    Phil64 Member Posts: 838 Member
    edited May 2016 #10
    Options
    Mike, it sounds like you are

    Mike, it sounds like you are learning quickly and you have found a good forum for continued learning and support. I am a stage IV colon cancer patient four going on five years. When I first posted to this site I remember feeling overwhelmed and experiencing all kinds of emotion. And someone wise (Craig for you old timers) told me that a cancer battle is like running a marathon. You have to pace yourself. i think this mindset has given me a rythum. It helps me to continue to forge ahead through the bad times and not get too high during the good times. I know I need to manage the pace. And then to resolve to continue. To be persistent. And to have faith that all will be well.

    i do think it is important to trust your doctors. I am lucky to have had good doctors and surgeons. And I FEEL like they have my best interest and that they have dedicated their career to battling cancer. If you don't trust your doctors than examine that. And consider finding ones you do. I think that is the most sensible thing I can do.

    i consider myself a pretty smart person and I was tempted to try and learn everything I could about this disease and curing it and surviving it. I don't think that is a bad thing to do. But I always try to remember that my knowledge on this formidable vast domain is a tiny fraction of the knowledge my doctors and surgeons have. And therefore I'm quick to ask them about their intuition my case and about their thoughts on the best course of action...

    I also try and remember that, in the end, we all will die. And for me I am a spiritual person. But putting that aside. I believe my focus should always be on enjoying the here and now. Taking time to smell the roses. And taking time to Love the ones that have been put into my life. So I wake up in the morning,  grateful to see the day and have some energy to get up. And then I try to fit as much love as I can into the day. 

    Love and Liget to you and your wife. 

    Phil

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Options
    Phil64 said:

    Mike, it sounds like you are

    Mike, it sounds like you are learning quickly and you have found a good forum for continued learning and support. I am a stage IV colon cancer patient four going on five years. When I first posted to this site I remember feeling overwhelmed and experiencing all kinds of emotion. And someone wise (Craig for you old timers) told me that a cancer battle is like running a marathon. You have to pace yourself. i think this mindset has given me a rythum. It helps me to continue to forge ahead through the bad times and not get too high during the good times. I know I need to manage the pace. And then to resolve to continue. To be persistent. And to have faith that all will be well.

    i do think it is important to trust your doctors. I am lucky to have had good doctors and surgeons. And I FEEL like they have my best interest and that they have dedicated their career to battling cancer. If you don't trust your doctors than examine that. And consider finding ones you do. I think that is the most sensible thing I can do.

    i consider myself a pretty smart person and I was tempted to try and learn everything I could about this disease and curing it and surviving it. I don't think that is a bad thing to do. But I always try to remember that my knowledge on this formidable vast domain is a tiny fraction of the knowledge my doctors and surgeons have. And therefore I'm quick to ask them about their intuition my case and about their thoughts on the best course of action...

    I also try and remember that, in the end, we all will die. And for me I am a spiritual person. But putting that aside. I believe my focus should always be on enjoying the here and now. Taking time to smell the roses. And taking time to Love the ones that have been put into my life. So I wake up in the morning,  grateful to see the day and have some energy to get up. And then I try to fit as much love as I can into the day. 

    Love and Liget to you and your wife. 

    Phil

    JanJan's post

    I love this reply, Phil.

    I know you have replied to JanJans post in Panic Attacks? Anxiety. But this would be so fitting in there. Maybe you could tag it onto your post there.  It is worded so perferctly. 

    SUE