oropharyngeal with neck met - any treatment options once non curative no longer option?

Options
emmie lou
emmie lou Member Posts: 7
in Head and Neck Cancer #1

Hi all,

Is anyone on here in same situation of no active treatment?

I am a caregiver to my dear mother who is the most important person in my life.  No curative treatment has been offered here in Ireland.  We are 1yr post diagnosis which at that stage was stage 3TN SCC oropharyngeal with met to the neck node right side.  Likely things have advanced since then.  Have received 5 doses of palliative radiation only.  Not a positive experience and never returned for any further oncological review as developed pneumonia which was not picked up by doctors on the radiation team.(radiation treatment some distance from home).  Treated for pneumonia in local hospital.  On discharge from hospital received GP referral to the local symptom control and community nurse team  who prescribe pain meds only.  I am sole caregive in the home.  Large abscess developed at site of the tumour in neck and 'pointed' and ruptured about 5 months ago.  Continues to drain daily and area under chin and the neck swells up.

 

Can anyone inform about any options if no longer pursuing curative treatment or is it only pain management?  For example would they fit a PEG tube if the cancer is advancing or is it not considered beneficial in a palliative system? If swallow goes does the patient starve or choke?  Do they fit stents to maintain airway if that is being damaged or just leave the person to suffocate?  All the care team have on offer is pain and anti-anxiety meds, nothing else.  Sadly there is not the medical expertise here in Ireland which is very far behind America in the area of healthcare.  I would sell every possession including my apartment to give my mother any care on offer.

Thank you for any help, I am so grateful.

Em

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited February 2018 #2
    Options
    maybe I am missing something?

    emmie lou,

    Well, I think you said it all. The position your Mother is in today and the health care (seriously, ready and available) to you, as you described, I would guess that pain management and nutrition to be the goals.  In my heart of hearts I want to treat and save your Mom, but it sounds like this is not an option.  We try our hardest in the H&N forum to provide hope and viable options for surviving.  This pivotal choice I think has vaporized.  Barring some divine intervention I think you are in for additional pain.  I wish it was as easy as giving up everything to help a loved one, but it is not and you must do what you have to do, to help your Mother at this difficult time.

    Matt

  • emmie lou
    emmie lou Member Posts: 7
    #3
    Options
    CivilMatt said:

    maybe I am missing something?

    emmie lou,

    Well, I think you said it all. The position your Mother is in today and the health care (seriously, ready and available) to you, as you described, I would guess that pain management and nutrition to be the goals.  In my heart of hearts I want to treat and save your Mom, but it sounds like this is not an option.  We try our hardest in the H&N forum to provide hope and viable options for surviving.  This pivotal choice I think has vaporized.  Barring some divine intervention I think you are in for additional pain.  I wish it was as easy as giving up everything to help a loved one, but it is not and you must do what you have to do, to help your Mother at this difficult time.

    Matt

    Bless you for your reply

    Bless you for taking the trouble to reply.  Will continue to take things one day at a time

    Em

  • Peneloppe
    Peneloppe Member Posts: 28
    #4
    Options
    Hi, sorry about your mom.  I

    Hi, sorry about your mom.  I would try to get a consultation in oncology so that they at least get an assesment of her current status.  From that point you can ask about palliative care and what special care she needs.  You could have the opportunity to discuss feeding, breathing, etc.  You need definitive answers in order to take care of her,  I can only imagine the stress you are experiencing without any support.

     

    if it is not curable for one reason or another,  they need to adress her quality of life for her and your sake.  I do not know about Ireland but you should try to contact a cancer organization and ask them for guidance, they would be able to refer you to the proper authorities.

     

    whishing you courage

  • jakesaround
    jakesaround Member Posts: 34
    edited February 2018 #5
    Options
    Sad to hear...

    Emmie,

    I am very sad to hear that your mom has not been able to get good care for her cancer, my heart goes out to you both. I agree with Peneloppe I would get an appointment with an onc or any doctor that you have a good relationship with and at least address the basic quality of life needs. I would think any doctor could get you an order for a peg if she is having trouble eating/swallowing. There does seem to be a lot of support that your medical system can offer you but you may have to be a "squeaky wheel" to get someone to listen. Be persistent and don't take no for an answer.

    Jake...

  • Curlyn
    Curlyn Member Posts: 189
    edited February 2018 #6
    Options
    Hi emmie lou, It is so

    Hi emmie lou, It is so difficult to watch loved ones failing. I think Matt is right, the goal being comfort care. Here is my take- The literature doesn't really support peg tube feedings for dying patients. It must be very hard on a body that is slowly shutting down to process all those calories, feed the cancer first. Not to mention putting her through that. Consider her quality of life with a draining/growing tumour. There are medications to spare your mom suffering and at this point, if she is uncomfortable, take them all, it is what they are for. Do what you can to make her last months as easy as possible, take support from the health team, even if it is supporting a refusal to eat or drink (you can still provide gentle mouth care).Tell her that you love her. Have no regrets. I wish the best getting through this.

  • emmie lou
    emmie lou Member Posts: 7
    #7
    Options
    Peneloppe said:

    Hi, sorry about your mom.  I

    Hi, sorry about your mom.  I would try to get a consultation in oncology so that they at least get an assesment of her current status.  From that point you can ask about palliative care and what special care she needs.  You could have the opportunity to discuss feeding, breathing, etc.  You need definitive answers in order to take care of her,  I can only imagine the stress you are experiencing without any support.

     

    if it is not curable for one reason or another,  they need to adress her quality of life for her and your sake.  I do not know about Ireland but you should try to contact a cancer organization and ask them for guidance, they would be able to refer you to the proper authorities.

     

    whishing you courage

    thank you for your advice and

    thank you for your advice and kind words

  • emmie lou
    emmie lou Member Posts: 7
    #8
    Options
    jakesaround said:

    Sad to hear...

    Emmie,

    I am very sad to hear that your mom has not been able to get good care for her cancer, my heart goes out to you both. I agree with Peneloppe I would get an appointment with an onc or any doctor that you have a good relationship with and at least address the basic quality of life needs. I would think any doctor could get you an order for a peg if she is having trouble eating/swallowing. There does seem to be a lot of support that your medical system can offer you but you may have to be a "squeaky wheel" to get someone to listen. Be persistent and don't take no for an answer.

    Jake...

    thank you

    Jake - thank you, this is very good advice and the kindness of all the replies I have received helps to keep me going for another day ... one at a time

    Emmie

  • emmie lou
    emmie lou Member Posts: 7
    #9
    Options
    Curlyn said:

    Hi emmie lou, It is so

    Hi emmie lou, It is so difficult to watch loved ones failing. I think Matt is right, the goal being comfort care. Here is my take- The literature doesn't really support peg tube feedings for dying patients. It must be very hard on a body that is slowly shutting down to process all those calories, feed the cancer first. Not to mention putting her through that. Consider her quality of life with a draining/growing tumour. There are medications to spare your mom suffering and at this point, if she is uncomfortable, take them all, it is what they are for. Do what you can to make her last months as easy as possible, take support from the health team, even if it is supporting a refusal to eat or drink (you can still provide gentle mouth care).Tell her that you love her. Have no regrets. I wish the best getting through this.

    thank you

    thank you Curlyn for your kind wishes

Discussion Boards