Advice Needed - not really treatment related

maragib
maragib Member Posts: 5
edited March 2014 in Colorectal Cancer #1
I don't know where to begin. My Father In Law was diagnosed with Colon Cancer in Jan 2009. After what seemed like forever he got surgery and then chemo treatment afterwards. He was "cleared" of cancer in November 09. he went in for his yearly check feb 2010 and after blood work and a Pet scan they found cancer in his lungs - 3 nodes, one somewhere between 1.5 cm to 4cm (we aren't exactly clear because two seperate drs. have told him differently). This is the only scan they have done since his initial scan in Jan '09 - does that seem weird? I would think they would have been monitoring the size and whether it was showing up somewhere else. I am pretty sure it was also found in his lymph nodes at the time. It seems pretty aggresive to me, but I am no doctor.

My husband and our family live over 3000 miles away - we are in Alaska and they are in New York. I guess my question is - how serious should we take this? We began considering moving right around the time we first heard but it hasn't seemed pressing.
It is difficult getting answers 2nd hand from his parents and it is even more difficult for me because my husband and I approach our families so differently. I would be questioning up the wazoo and want to be there with my own parents asking the Drs. questions myself. I *think* my husbands approach is much more trusting that his parents are getting the best care and asking the right questions.

If it were you would you want your son's family to come "home" to help. Or would you think you would be more in the court of wanting space to do it yourself? I feel like we should be far more worried about the seriousness of the situation than they (my husband included) feel. I want to be there to be supportive and helpful, but not in the "way". Should I ask the questions that I think should be asked and give my advice about the situation, or just back off and let them space to deal with it the way they choose? THANK YOU for reading if you got this far.

Mara

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    #2
    Mara
    It seems to me, my opinion only, that your father in law should have been followed closely this last year. After the initial chemo did he have what we refer to as "chemo lite", to "mop up" any cells that may be floating around. A year between scans sounds like a long time to me. From Alaska to New York is a long, expensive flight. Would your in-laws agree to you and/or your husband speaking by phone with the oncologist? They would have to give permission for him to discuss his case with you but perhaps a call with the doctor will give you a better understanding of what is going on and you can base your decision to come home, if only for a visit, on that call. Is mets to the lungs serious, yes. It is treatable, yes. Take care and let us know what you decide and post any questions you may have. Take Care Tina
  • Patteee
    Patteee Member Posts: 945
    #3
    Was your fil dx stage 4 Jan
    Was your fil dx stage 4 Jan 09? The follow ups depend on the stage. I was staged 3B in June 08, had a resection and 6 months of chemo. Then a colonoscopy in Feb (only due to the colorectal surgeon wanted a complete one done as I was obstructed before and they coulddn't) and then nothing until June 09 when I had a CT scan. Then a CEA every 3 months, colonoscopy in Feb 09 and will have another CT scan in June. If your father was stage 4 in Jan 09, then yes, more follow up should have been done.

    Personally, I would wait until more testing is done or a chemo plan of action is given before deciding my next step.
  • maragib
    maragib Member Posts: 5
    #4
    Patteee said:

    Was your fil dx stage 4 Jan
    Was your fil dx stage 4 Jan 09? The follow ups depend on the stage. I was staged 3B in June 08, had a resection and 6 months of chemo. Then a colonoscopy in Feb (only due to the colorectal surgeon wanted a complete one done as I was obstructed before and they coulddn't) and then nothing until June 09 when I had a CT scan. Then a CEA every 3 months, colonoscopy in Feb 09 and will have another CT scan in June. If your father was stage 4 in Jan 09, then yes, more follow up should have been done.

    Personally, I would wait until more testing is done or a chemo plan of action is given before deciding my next step.

    Stage 3/4 then 3 then 4 then 3
    He was 3/4 until after surgery and then I guess when they got it out they decided on 3. Originally when we found out about the lung mets we heard that they decided on stage 4 because they thought it had grown up in the 4 months since he stopped treatment. But the surgeon that they saw this week (his colon surgeon, it was reg scheduled check up - not related to the new lung mets) He said it probably had been growing since the last scan so he knocked it down to stage 3 - this is what is the MOST frustrating, hearing so many different answers.

    His course of treatment sounds like what yours Patteee, so I guess not it doesn't seem too strange. But since they found it in his lymph nodes I figured they would be checking to see if it was growing this past year.
  • maragib
    maragib Member Posts: 5
    #5
    geotina said:

    Mara
    It seems to me, my opinion only, that your father in law should have been followed closely this last year. After the initial chemo did he have what we refer to as "chemo lite", to "mop up" any cells that may be floating around. A year between scans sounds like a long time to me. From Alaska to New York is a long, expensive flight. Would your in-laws agree to you and/or your husband speaking by phone with the oncologist? They would have to give permission for him to discuss his case with you but perhaps a call with the doctor will give you a better understanding of what is going on and you can base your decision to come home, if only for a visit, on that call. Is mets to the lungs serious, yes. It is treatable, yes. Take care and let us know what you decide and post any questions you may have. Take Care Tina

    Tina
    I would like to be able to sit in on a dr call or even call him ourselves, although it seems unlikely. They do not like his bedside manner. I guess he tends to talk over them and not let them get their questions out. I have been trying to find a patient advocate or something of the like, we have one up here at our hospital specifically for cancer and she is great. They don't seem to be willing, or want, to change ONC, they would have to drive about 40 miles to visit that DR.

    I believe he only got the 6 months of treatment and nothing after. I am guessing they did not do another scan because they had removed the found cancer and didn't expect it to po up anywhere else. If it were myself I would not have been comfortable with that, especially after I knew it was found in my lymphs. thanks.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #6
    maragib said:

    Stage 3/4 then 3 then 4 then 3
    He was 3/4 until after surgery and then I guess when they got it out they decided on 3. Originally when we found out about the lung mets we heard that they decided on stage 4 because they thought it had grown up in the 4 months since he stopped treatment. But the surgeon that they saw this week (his colon surgeon, it was reg scheduled check up - not related to the new lung mets) He said it probably had been growing since the last scan so he knocked it down to stage 3 - this is what is the MOST frustrating, hearing so many different answers.

    His course of treatment sounds like what yours Patteee, so I guess not it doesn't seem too strange. But since they found it in his lymph nodes I figured they would be checking to see if it was growing this past year.

    Stage IV
    Your father in law is Stage IV and will not be downgraded. Once colon or rectal cancer has spread past the colon and lymph nodes, it becomes Stage IV.

    FIL is most probably facing many years of treatments. How old is he and your mil? Do they have other family nearby?
  • maragib
    maragib Member Posts: 5
    #7
    dianetavegia said:

    Stage IV
    Your father in law is Stage IV and will not be downgraded. Once colon or rectal cancer has spread past the colon and lymph nodes, it becomes Stage IV.

    FIL is most probably facing many years of treatments. How old is he and your mil? Do they have other family nearby?

    OKay good to know about the staging
    FIL is 58 and they have lots of family around. Both of their duaghters and his mom and sister all live within the same town, and his other brothers all live generally close by, we are the only ones that are far away.

    I am surprised that they are not more concerned, MIL's mother died from colon cancer in 2004. Although she was in very poor health outside of the cancer whereas most people would consider FIL very healthy.

    thanks for all of the advice so far, I hope I am able to use this site for a resource that won't get me into "trouble" for asking with the in-laws.

    Mara
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #8
    Mara
    First let me say I am glad you came here with your questions. The folks here are super about sharing and caring.

    I don't have any opinions regarding the treatment (or lack of) since I am new to Cancer, but I will respond to your other issues abut you and your husband's interaction with the in-laws regarding the situation.

    Cancer is a serious business, no doubt about it. I think before you make any major move decisions, you need to determine what your expectations are from being closer. If you think that you will be able to have more impact regarding his doctors, treatment, etc. you might or might not. It all depends on your FL's decisions. He alone is the one who has the control, unless there is some concern over his mental abilities.

    Your feelings are not unusual for the family and friends of a person with Cancer. When you care about someone, you want to do all in your power to help them. There are some patients (and I include myself) who don't really want to have family involved in the process, any more than necessary. Not because they don't care about your feelings or understand your caring, but because they feel they should be able to handle it. Needing help from your children, in any way, is a tough thing to deal with when you have always been the head of the family.

    I would suggest that you listen carefully to all that you are told by the in-law's, research any issue you have, and then present the information you gather to FL for his consideration.
    I would suggest that they present their issues, questions or needs for clarification in writing. Best case would be able to discuss them at the appointment, but if that can't happen then push for a written response within a few days. It does seem worrisome about the interaction with the doctor. Every patient needs to have a good raport with their medical team and feel they are a part of the process, not just the recipient of whatever the doc says.

    A second opinion is always a good thing to get, no matter how far they have to go to get it.

    Best wishes as you ponder all the advise you will get here, and hopefully things become clearer for all of you.

    Marie

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