| Joined: Feb 2014 Posts: 2 Member | OP Member Joined: Feb 2014 Posts: 2 | My name is Linda. My older (51) brother thought he had a toothache back in June of last year found out that it was actually SCC of the sublingual area. In keeping with his usual way of dealing with things, he did nothing but continue to drown his realities with alcohol. I managed to get him to a hospital in S. Fl that following Nov. where he had an MRI. His attending told me what type of cancer it was and he had it on his tongue, tonsils, and throat. Jimmy is indigent so there would be no surgeon willing to take on the responsibility due to his certain lack of compliance. Here we are 3 mo. later and he's a complete mess. I flew him up to me in NC and took him to the ER where they did nothing but tell me to call hospice, which I did and he's now under their care here in my home. The hosp nurse said the whole area under his jaw is tumorous. He's can barely talk and can not chew bc his tongue is twisting and hardened and his teeth are falling out. SO... one of my millions of q's is why does he complain of so much head pain? Will hospice scan him so we know where the cancer is spreading? Do we just treat symptoms w/o knowing where its going? oh mah gosh, my head is spinning...
LindaP.
| | | | Joined: Jan 2014 Posts: 17 Member | Member Joined: Jan 2014 Posts: 17 | I am not sure of your questions, but I am so sorry you are witnessing this with your brother. I will keep you both in prayer and guide the physicians caring for him. In my experience, hospice will only try to keep him comfortable. They will not do anything that would attempt to save him or examine him any further unless he is not on hospice care. That is just what I know of hospice care here in Tennessee. Most insurances will not cover any other measures than comfort care.
Non-smoker, non-drinker 10.28.13 Biopsy R front tongue 10.30.13 Stage 2 SCC dx HPV Neg, age 27 11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin 1.17.14 SO confirmed SCC recurrence 1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins 1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor 2.5.14 Clear CT 2.17.14 Clear PET 3.10.14 Start IMRT
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Oh Linda, this is such a sad story. You have obviously tried very hard to help your Brother. It sounds like his tumour is now so extensive that there is no treatment available for a cure. Hospice is for end of life care. Their job is to provide physical care and ease the patients suffering with adequate pain meds. I would ask them about getting a PEG inserted into his abdomen as a means of both feeding and hydrating him. I'm guessing that he has head pain from the huge size of the tumour pressing on structures in the head and on nerves. As I'm not from the USA I can't comment further on your Hospice system. However I would want to sit down with one of the Docs and a Nurse involved in his care and discuss exactly what they know about Jimmy's cancer, it's spread and what is likely to happen next. Also what they plan and have to offer to you all. Thinking of you all, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im so sorry to hear about your brother. being his caregiver must be the most difficult thing you have every gone thru. I cant even begin to imagine how hard this is on you.
As far as the pain goes, it could be the tumor is pressing on nerves causing his pain. You can ask about the feeding tube but I would doubt it would be given. From what I understand of hospice they will not give life supporting tools to patients. Their job is to medicate and keep the patient comfortable. Hospice staff are specially trained and should be able to answer many of your questions, especially about end of life things. We can help with moral support and any questions about OC.
This is going to be a long hard road for you. I admire your strength being able to handle this terrible situation. Your brother is a very fortunate man, I hope he appreciates everything you have done for him.
Best wishes! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I can certainly see how this would make your head spin. Unfortunately I am also one of those family members who can provide little help on what hospice can and can't do.
My limited understanding is they limit themselves to minimizing pain and they do it via pain meds. When my father was in hospice for end stage alzheimers a feeding tube was considered to provide some nutrition. It was just as quickly ruled out because in the doctors opinion he would've ripped it out and created an infection problem on top of his malnutrition problem. The only way to prevent it being ripped out would've been to restrain him with straps and that was deemed to be cruelty.
In light of your brothers long term lack of interest in his medical condition would he even stand for a feeding tube?
Good luck Linda, we will all be thinking of you.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Linda,
I'm sorry to hear about your brother. There's nothing easy about this journey you are on.
You can sit down with the Hospice social worker and ask all the questions you need answers to. As Tammy says, it is for end of life issues. As a general rule, any "treatment" other than palliative care is not allowed. Diagnostic workups and such are also not allowed in hospice. Even ER visits for the same disease issues are not allowed. The main charge is to keep the patient comfortable. Please make sure they are doing everything possible as far as comfort care. Pain is only one piece that makes people comfortable. Hydration and some kind of nutrition could improve comfort. They can also provide you with help around the house, volunteers to help your brother, spiritual counseling and comfort for you, too.
Your Hospice agency may have some specific guidelines that you need to know.
I'm so sorry you are having to experience this. My heart goes out to you.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Linda,
Thank you for finding us here. You have a heart of gold and can be of the most help to engage hospice as much as possible to address the comfort for your brother.
I want to say, get him to the doctor but if he has proven to not be willing to accept doctor care and treatments, then you are doing all you can and have to take comfort with that fact.
Lean on hospice as much as you can.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Linda I think you've been given some valuable information. I don't have much to add other than I'm sorry about what you are going through. And Tammy is right his pain Is likely related to nerve involvement. The hospice/homecare should be working to keep his pain under control. This has to be one of the worst cancers in the way it manifests itself and it's impact on day to day life. Hugs and many blessings to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2014 Posts: 2 Member | OP Member Joined: Feb 2014 Posts: 2 | Wow! thanks you guys... nothing like someone understanding what many can not. I'm so glad I stumbled upon this sight and you l are so warm and comforting.
LindaP.
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