Things just keep getting worse

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wifetojeff69
wifetojeff69 Member Posts: 46 Member
in Colorectal Cancer #1

My husband had his surgery just 2 weeks ago, today we recieved the pathology report with is worse than we thought. They only saw maybe 3 lymph nodes involved but there were 5 of the 17 removed.  Here is what is said: Moderately differentiated adenocarcinoma, invasive through lymphovascular invasion, surgical margins free of tumoroe, Mesenteric lymph nodes, positive for metastatic disease (5/17) Pathologic stagin pT4a pN2a MX

 

I mean he told us that the chemo is important to do and that it is no different than the 3 lymph nodes they first suspected, but I'm curious about the lymphovascular invasion, wht does this mean? If it is in the blood stream what is the likeyhood it will come back? 

Plus my husband has had an autoimmune thing happen to him 15 years ago called CIDP its cronic inflammatory demylenating polyneurapathy. Since his bowel resection he is starting to have tingling and numbness all over in his arm, hands, and spots random but so far mostly affecting arm and hand wrist. I am so worried about the chemo with the neurapahty side effects of this and that he wont be able to do because of this. The last time he had cidp he was unable to walk alone until he finally got the needed treatment. I am so scared right now.He is losing hope so bad and says everything just keeps getting worse. I'm keepting my faith right now and praying hard, but I am so scared, I can only imagine how he feels. I am trying to remain strong for him.

Comments

  • SandiaBuddy
    SandiaBuddy CSN Member Posts: 1,381 Member
    #2
    Overwhelming

    At this point in time, it is likely that everything is overwhelming.  I think we have all experienced that.  His health is no different today than it was yesterday, you only have new information to digest.  I can offer very little help, other than to say take it one day at a time.  Try not to overthink what could happen, and to make the best decisions you can with the help of your research and your medical team.  Perhaps you can both have a good meal, a glass of wine and get out for a walk.  Sometimes a little diversion helps. Sorry, I have little to offer other than a sympathetic ear.  Perhaps others with more similar experiences can offer more.

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #3
    SandiaBuddy said:

    Overwhelming

    At this point in time, it is likely that everything is overwhelming.  I think we have all experienced that.  His health is no different today than it was yesterday, you only have new information to digest.  I can offer very little help, other than to say take it one day at a time.  Try not to overthink what could happen, and to make the best decisions you can with the help of your research and your medical team.  Perhaps you can both have a good meal, a glass of wine and get out for a walk.  Sometimes a little diversion helps. Sorry, I have little to offer other than a sympathetic ear.  Perhaps others with more similar experiences can offer more.

    Thank you, it is hard to

    Thank you, it is hard to digest even though we knew it was at least in one lymph node but now to 5 and lymphvascualr that just sounds bad. Unfortunatley my husband has not wanted to do anything since being home from his surgery, he just doesn't want to be around people. It makes it hard for me because I don't really have much of a support group other than by phone, he even has a hard time if I even leave which has been hard.

  • beaumontdave
    beaumontdave CSN Member Posts: 1,302 Member
    #4
    It's terrifying in the

    It's terrifying in the beginning, wondering what is loose in your body, what may pop up and when, but you have to see it as a marathon, a long fight that may have more than one go-round, but still can leave your man clear or contained in time. I had 2 of 17 nodes at diagnosis, but after chemo, years later it finally showed in my liver. My onc/surgeon said it was likely there from the begining, and it popped up once more as a spot in the liver, but they got it in resection and here I am, clear for 5 years in Sep., doing well 12 years after they found it. Mine was moderately differentiated as well, and though it spread, it was slow enough for them to get it all. Have faith and know it's not a decided thing, and can be caught in the longer run, even though it seems so bad now. This is a long fight, set your mind to dealing with it as you need to, educate yourself on the choices, procedures, and what facilities you may want to go to, if your current team doesn't seem on top of things. One other thing, I have a form of dystrophy called CMT, that involves the myelin sheath constantly degrading and reforming around the peripherial nerves so I always had some neuropathy going on. the Folfox made it somewhat worse for awhile and I didn't get back to where I was before for 16-18 months, but I did get back, and chemo[besides all the usual hot-cold stuff and fatigue] wasn't that bad. I even worked through it and I'm a contractor. Have some faith and help your man believe it can be caught, there's many who came hear with worse prognoses, and are still here to tell their stories, so keep reading........................................Dave

  • Butt
    Butt CSN Member Posts: 352 Member
    #5

    What is very important is to have a cat and pet scan. They will show a possible spread. They usually do them a month after the surgery.

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #6
    beaumontdave said:

    It's terrifying in the

    It's terrifying in the beginning, wondering what is loose in your body, what may pop up and when, but you have to see it as a marathon, a long fight that may have more than one go-round, but still can leave your man clear or contained in time. I had 2 of 17 nodes at diagnosis, but after chemo, years later it finally showed in my liver. My onc/surgeon said it was likely there from the begining, and it popped up once more as a spot in the liver, but they got it in resection and here I am, clear for 5 years in Sep., doing well 12 years after they found it. Mine was moderately differentiated as well, and though it spread, it was slow enough for them to get it all. Have faith and know it's not a decided thing, and can be caught in the longer run, even though it seems so bad now. This is a long fight, set your mind to dealing with it as you need to, educate yourself on the choices, procedures, and what facilities you may want to go to, if your current team doesn't seem on top of things. One other thing, I have a form of dystrophy called CMT, that involves the myelin sheath constantly degrading and reforming around the peripherial nerves so I always had some neuropathy going on. the Folfox made it somewhat worse for awhile and I didn't get back to where I was before for 16-18 months, but I did get back, and chemo[besides all the usual hot-cold stuff and fatigue] wasn't that bad. I even worked through it and I'm a contractor. Have some faith and help your man believe it can be caught, there's many who came hear with worse prognoses, and are still here to tell their stories, so keep reading........................................Dave

    Thank you Dave for your

    Thank you Dave for your encouragement. 

  • Annabelle41415
    Annabelle41415 CSN Member Posts: 6,742 Member
    edited August 2019 #7
    Unknown

    Everything right now is unknown and that is a very scary place to be.  Your husband doesn't know what to think, where the treatment will lead him, and how he is going to deal with everything coming up.  This time ahead is going to be a rollercoaster of "do this, do that, feelings, anxiety, etc." that he is not going to be sure which way to turn or how he is supposed to feel.  It's important that he expresses his thoughts and fears with his doctors so they can try to put this all in perspective for him.  It's a scary time.  You sound like a very wonderful wife who is trying to come on this board and get some type of assurance to help him, and you, deal with this significant blow in your life.  Just remember, we are here to help you and your husband get through this.  It might not always be easy, but remember that you always have someone that will listen to your concerns and help as much as we can right here on this board.  Wishing your husband the best.

    Kim

  • Capox Dude
    Capox Dude CSN Member Posts: 127 Member
    #8
    lymphovascular invasion


    I am sorry you are both going through this. We all got jumped by the news. I would not place an extraordinary emphasis on the 5 versus 3 nodes. Granted, none is better than one, and three (like my DX) are better than 10. But the good news is that the rest were not positive. The fact that your doctor was not overly concerned is something that you can rely on. I can only advise to look at all of the bad news in perspective. No matter when they find it, and no matter what stage, finding it now is better than finding it later.



     



    As to your question, I am not a doctor, and we do not offer medical advice, but here are links you may find helpful.



     




     




     



    Note the use of 'may' in the descriptions about lymphovascular invasion.  'May' does not mean that you are sentenced to a bad result.    Every one of the many factors in cancer staging has some relevance, and that goes both ways, good and maybe not so good. So please talk to the oncologist, and make sure you get a full and satisfactory explanation of your questions. You are owed that, and feel free to politely insist on it. If the doctor will not take the time to reassure you with honest information, then maybe you need to look elsewhere.  But you seem like you are in good hands.  My comment was not meant to criticize your doctor, only to let you know that NONE of us deserve to suffer from extra stress and fear because a provider will not spend the time to answer our questions.   Mine is incredible, and I'm sure that yours is too. 



     


    Best of luck to you both. This board is a Godsend, so feel free to share your thoughts with these incredible people.

     

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #9
    Annabelle41415 said:

    Unknown

    Everything right now is unknown and that is a very scary place to be.  Your husband doesn't know what to think, where the treatment will lead him, and how he is going to deal with everything coming up.  This time ahead is going to be a rollercoaster of "do this, do that, feelings, anxiety, etc." that he is not going to be sure which way to turn or how he is supposed to feel.  It's important that he expresses his thoughts and fears with his doctors so they can try to put this all in perspective for him.  It's a scary time.  You sound like a very wonderful wife who is trying to come on this board and get some type of assurance to help him, and you, deal with this significant blow in your life.  Just remember, we are here to help you and your husband get through this.  It might not always be easy, but remember that you always have someone that will listen to your concerns and help as much as we can right here on this board.  Wishing your husband the best.

    Kim

    Thank you Kim I really

    Thank you Kim I really appreciate having a support place to go, it really helps me talk about it and know ways that I can better comfort my husband, this has been so hard on me watching him in all the emotions but I can't even imagine how he feels through all of it.

    We have our appointment with the oncologist Monday, we really likeher a lot, she is very helpful in answering all of our questions and doesnt ever rush us. Our surgon is excellent as well but we didn't want to ask him all of those questions since he was just the surgeon. 

    Thank you again

  • SandiaBuddy
    SandiaBuddy CSN Member Posts: 1,381 Member
    #10
    wifetojeff69 said:

    Thank you, it is hard to

    Thank you, it is hard to digest even though we knew it was at least in one lymph node but now to 5 and lymphvascualr that just sounds bad. Unfortunatley my husband has not wanted to do anything since being home from his surgery, he just doesn't want to be around people. It makes it hard for me because I don't really have much of a support group other than by phone, he even has a hard time if I even leave which has been hard.

    Count

    My count was three, and I am still alive and thriving 2.5 years later.  I recently read an article about the classification of lymph nodes that said about half the evaluators can make a categorization one way or the other, meaning the exact count from one evaluation to another can be very different.

    I have sat in the seat of not knowing if I would survive for days, weeks, or years.  It is difficult, and it kind of sounds like your husband is being pulled down by it all.  But for me, when I got up on any certain day, I would tell myself, "I am good for another day," and I would get out there and make the best of it.

    For the down times, some on this board have found help in anti-depressents, medical marijuana, and the good old fashioned male medicine, alcohol.  As for me, I tend to like alcohol and exercise. Best of luck in these tough times and please always feel free to come here for a sympathetic ear and sometimes some valuable information.

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #11
    Capox Dude said:

    lymphovascular invasion



    I am sorry you are both going through this. We all got jumped by the news. I would not place an extraordinary emphasis on the 5 versus 3 nodes. Granted, none is better than one, and three (like my DX) are better than 10. But the good news is that the rest were not positive. The fact that your doctor was not overly concerned is something that you can rely on. I can only advise to look at all of the bad news in perspective. No matter when they find it, and no matter what stage, finding it now is better than finding it later.



     



    As to your question, I am not a doctor, and we do not offer medical advice, but here are links you may find helpful.



     




     




     



    Note the use of 'may' in the descriptions about lymphovascular invasion.  'May' does not mean that you are sentenced to a bad result.    Every one of the many factors in cancer staging has some relevance, and that goes both ways, good and maybe not so good. So please talk to the oncologist, and make sure you get a full and satisfactory explanation of your questions. You are owed that, and feel free to politely insist on it. If the doctor will not take the time to reassure you with honest information, then maybe you need to look elsewhere.  But you seem like you are in good hands.  My comment was not meant to criticize your doctor, only to let you know that NONE of us deserve to suffer from extra stress and fear because a provider will not spend the time to answer our questions.   Mine is incredible, and I'm sure that yours is too. 



     


    Best of luck to you both. This board is a Godsend, so feel free to share your thoughts with these incredible people.

     

    Thank you, I do worry that he

    Thank you, I do worry that he has a lot of anxiety from all of this. Plus for the fear that he is now having some nerve issues again. 

    I am really worried about how the chemo will go for him. he will do folfox, we will find out more on Monday.

  • sunbeamtim
    sunbeamtim Member Posts: 4 Member
    edited August 2019 #12
    Neuropathy

    Make the oncologist aware of the neuropathy. After 5fu and oxyliplatin in 2003, I have constant issues with numb hands and feet, altho I find keeping active helps massively, fingerwork on guitar etc, and exersize. Second time around with recurrence last year, the oncologist would not give me the oxyliplatin, just the 5fu. She was happy to make a judgement based on my condition, and I was happy to accept her advice. She asked me if I ever dropped things or tripped over my feet, and I said no, as I didn't really think I was affected that much. Promptly left her office with my sister, dropped a cup of coffee in the waiting room, and tripped up going down the steps of the hospital. Had a giggling fit with sister, went back and told the doc, and she made her decision based on that.

    Best of luck Monday. For the record, I was given 2 years to live in 2003 with D4 colon cancer and metstases in the liver. Still around, recurrence 15 years on a touch annoying , but its not as bad this time, caught it earlier, so should be a walk in the park :)

     

  • sunbeamtim
    sunbeamtim Member Posts: 4 Member
    #13
    sunbeamtim said:

    Neuropathy

    Make the oncologist aware of the neuropathy. After 5fu and oxyliplatin in 2003, I have constant issues with numb hands and feet, altho I find keeping active helps massively, fingerwork on guitar etc, and exersize. Second time around with recurrence last year, the oncologist would not give me the oxyliplatin, just the 5fu. She was happy to make a judgement based on my condition, and I was happy to accept her advice. She asked me if I ever dropped things or tripped over my feet, and I said no, as I didn't really think I was affected that much. Promptly left her office with my sister, dropped a cup of coffee in the waiting room, and tripped up going down the steps of the hospital. Had a giggling fit with sister, went back and told the doc, and she made her decision based on that.

    Best of luck Monday. For the record, I was given 2 years to live in 2003 with D4 colon cancer and metstases in the liver. Still around, recurrence 15 years on a touch annoying , but its not as bad this time, caught it earlier, so should be a walk in the park :)

     

    Meant to mention.

    ps diagnosed as C3 this time, surgery 15 months ago, finished chemo december, still clear, and neuropathy no worse then before.

    All the best.

    Tim

  • Trubrit
    Trubrit CSN Member Posts: 5,805 Member
    #14
    sunbeamtim said:

    Meant to mention.

    ps diagnosed as C3 this time, surgery 15 months ago, finished chemo december, still clear, and neuropathy no worse then before.

    All the best.

    Tim

    Hello Tim

    Were you diagnosed with the same primary Cancer or something different.  

    I think I would clal it allot more than annoying, especially after 15 NED.

    Tru 

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    edited August 2019 #15
    When we originally talked

    When we originally talked with the oncologist and went over the 2 options of chemo treatment he mentioned to her about his nerve issues he had in the past, she said that they will keep a very close eye on iit and if he starts noticing any change they will wither reduce dose or eliminate, I'm afraid that if they eliminate then the chemo will not be as effective. He is already having the nerve issues coming back, we can only assume that it is from the surgery (he had CIDP beofre 15 years ago brought on after a back surgery), it's an automimmune disorder. We see the nuerologist today and the oncologist on Monday. Hopeing for some answers.

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