My 45 year old daughter just had a cancer tumor removed. Doctors say stage IV

Keystone Mom
Keystone Mom Member Posts: 1
in Colorectal Cancer #1

Feeling helpless I stumbled on this website.  I am here to see what we have install for all of the family.  They removed a soccer ball size tumor from her.  It wrapped around her kidney and part of her colon.  The kidney and part colon were removed as well as 13 lymph nodes.  They don't know if they got them all yet.  She went from 140 lbs to 90 within a short period.  She was diagnosed with cirrohsis of the liver in 2010 on only has 20% functioning so Chemo is not an option right now.  Radiation is also not an option due to the fact the doctors say the location is too dangerous and could damage other organs.  Right now she is still from the surgery performed 2/7/2013.  She is doing very well.  Back in her apartment and driving short trips.  However we will not know anything till June when we have a scan and if something looks active then a Pet scan and then we will discuss options as the doctors say.  I am not sure how to proceed.  The doctors say it will come back.  When and where they don't know.  I am debating whether to find a new home with a small in law apt so she is close or remodeling my home with a in law unit.  We have very different lifestyles and time zones so we need to be separate.  another problem is we are trying to get disability from SS and since she hasn't worked in many years does not have the credits left.  She could get SSI but has a settlement from her husband in the divorce and being honest people it shows.  She can put it into a home or renovation but then would need to wait another 6 mos to reapply and I was told it takes another 3 mos to approve and another 6  mos to start to receive it.  I have no idea if she has that much time left.  Another avenue is to sue the liver doctor for not following up on many red flags in the past 2 years.  So far no attorney wants the case because they think she will die before it is settled and therefore no settlement and no money to them.  What is wrong with society.  I guess we forget about people and just think about the almighty $$$.  Anyway just venting.  Any feedback is appreciated.  Thanks

Comments

  • KayeKay
    KayeKay Member Posts: 122
    #2
    You need 2nd and 3rd

    You need 2nd and 3rd opinions. I was dx stage 4 in 2011 and told by my 1st onc I would live 2 yrs max. I was 2 yrs in Feb and now dealing with a recurrence. Top cancer research hospitals. google the top 100. find one close to u. find an attorney that will take the case. there is one out there im sure. Sending prayers your way...

  • devotion10
    devotion10 Member Posts: 623 Member
    #3
    Keystone Mom: Well, it sounds as if things are very difficult

    for you and your family right now.  I am sorry you have to be here, but you will find a good deal of support from many kind individuals on this forum ... some have cancer and some care for those who have cancer. Feeling helpless seems reasonable given all that has changed for your daughter and your family as a result of her cancer diagnosis. It is a positive sign though that you say she is healing well after her surgery.

    Chemo: You mentioned that chemo was not offered to her because she was diagnosed with cirrhosis of the liver in 2010 and only has 20% functioning ... so, you mean that she had chronic liver disease that resulted in scarring and now has an 80% loss of liver function? ... and this is why they have no plan to do chemo?  

    Scans: Her surgery was in February and the doctors do not plan to scan her again until June?  That is five months after her surgery ... maybe someone else with more experience than me will address this on the forum, but I think that is a rather long time to go without some type of treatment or monitoring to see how her cancer progresses.

    Living arrangements: It sounds like your daughter has been ill for quite a while and that she may now have no one to care for her and you are considering stepping in to provide her a place to live ... this is a wonderful thing to do as she does sound quite ill and the future may be rough for her if the doctors feel she has no treatment options ... the idea that you need to be separate from her because your life styles are different may not be a significant issue if she is very ill ... maybe those differences will not seem so important.

    SSDI and SSI: It would be helpful to have your daughter's case reviewed by a Disability Attorney because trying to spend down or transfer assets to qualify for SSI can result in one being ineligible for up to three years. 

    Suing a Former Doctor: Perhaps that isn't the best way that your daughter should spend her time as she may need all her energy to treat her disease, or if untreatable, she will need to be surrounded with some positive support and love.  Litigation can be a nasty process.

    Second Opinion:  Is your daughter being treated at a major cancer center?  Can you help her arrange a second opinion from doctors that are not associated with the doctors now treating her?  

    It sounds like a very difficult situation and that your daughter was quite ill even before the cancer diagnosis -- if she had 20% liver function, it seems as if she was in the end stages of cirrhosis of the liver even before her cancer diagnosis.

    She will need a lot of support with her diseases and special care in the coming months.  You also will need support.  Ask any questions on this forum you like; there are many here with a great deal of experience.  Also, check to see if you can speak with an oncology social worker at the hospital where your daughter is being treated.  They can help connect folks to the resources and support they need including applying for disability and psychological counseling.

    My heart goes out to you ... such a difficult situation. Sending strength and courage your way. 

     

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    #4
    Feeling helpless is a normal emotion.....

    All that you are going through is overwhelming. Any support you can give her, whether from close or far away, is so important. Maybe you could put some issues on the back burner and just deal with her health for now. June does seem like a long time before a scan and second opinions are always an option. Glad you stumbled on this website....welcome...sending positive thoughts your way. ~ Ann 

  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Keystone:

    I'm sorry for the situation your family finds themselves in.  Your daughter seems to be recouperting well and now getting out of the house.  She will need a lot of support, both emotional and physical, so I agree with the others, it may be time to put personal differences aside and have your daighter just move in with you so she can get the emotional and physical support she will need.  I don't know if there are children involved or how much room you have in your home but if there is any way to make it work, just do it.  Until you have a clearer picture of what is going on and where the disease process stands, I, personally, would put remodeling on hold.  Remodeling can take a long time and be quite expensive.  As far as social security, if your daughter has not worked then she most likely is not eligible to receive it, it all depends on the credits and you have already been told she doesn't have the credits since she hasn't worked in a very long time.

    Try and move that June scan up so everyone involved has a clear picture of where things stand. 

    Best to you and your family - Tna

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    I'm sorry you have to join us.

    Helping a loved one with cancer is not an easy thing to do.  I don't have much in the way of advice, but I can reassure you that surgery alone can in some cases lead to a cure.  Chemo never worked for me, but I've had five surgeries to address several recurences, and finally got to remission in Dec. 2011, so it can be done.  Please keep us posted on how things are going, and tell your daughter we're rooting for her~Ann Alexandria

  • Coloncancerblows
    Coloncancerblows Member Posts: 296 Member
    #7
    I am so sorry about your

    I am so sorry about your daughter.  I don't have any advice for you but just wanted you to know I"m praying for both of you.  My mom comes every month and stays for a few weeks while I get my chemo treatments just to give my husband a break.  I appreciate her so much and I'm sure your daughter appreciates everything you're doing for her.  May God be with both of you during your journey ahead.

    Cynthia

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #8
    I have different

    I have different circumstances but my doctor left in a polyp 13 years ago (before the internet was popular so I never looked it up).  At 42 I ended up with cancer.  Doctors don't care and they don't stay on top of your health.  This doctor would book appt after appt and would keep you waiting for hours.  That should have been my sign.   If we had the internet back then, I would have run back to my office, looked it up and a cancer flag would have gone off.  Unfortunately you can't change the past so just do your best in the present and ask for second and third opinions.  When dealing with the stress of cancer, a lawsuit on top of it all would be horrible.   Money is important but if she can get treatment without it, that's first.  Money has to take a backseat unless it prevents you from getting help.  I haven't paid my medical bills at all yet but I'm done with treatment.  I did worry about money while in treatment, it was there but it was on the back burner.  Get her into a hospital and then ask about SSI and Medicaid. I know in NY, they can't deny you treatment due to money.  The living arrangements will occur as things progress.

Discussion Boards