Previous Thread
Next Thread
Print Thread
#201057 11-28-2021 07:27 AM
Joined: Nov 2021
Posts: 5
Benni Offline OP
Member
OP Offline
Member

Joined: Nov 2021
Posts: 5
I'm Benni from Newfoundland Canada. I may be posting prematurely but I need info anyway.
A year ago, I started having horrible mouth pain with no visible sores. Plus a piercing earache.
My family doctor thought I might have nerve pain from having a stroke 5 years ago. Nothing showed on a CT scan.

He put me on gabapentin for 6 months, it did nothing so I weaned off it a few weeks ago.
He referred me to an ENT.
I've been "tongue tied" for the past 2 months making it difficult to eat or talk good. The ENT took a biopsy under my tongue a few days ago. He is reasonably certain it is cancer. He'll have results in 2 weeks.

If I do have cancer, I will not opt for chemo. Doc says I may have to go to hospice then for pain management.

Info needed is what hospice will be like? Private room? What are you allowed to bring with you (same as hospital stay)?

Joined: Sep 2019
Posts: 74
Likes: 6
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 74
Likes: 6
Hello Benni,welcome to the group,why they have to wait 2 weeks for results even after your Dr is certain that it's cancer that don't make sense,I would push for quicker results here in usa they move reasonably faster after dr think its cancer,anyway don't think ahead it could be nerves or lot of other things so wait for results after 100% conformation then you start asking questions.goodluck and try not to think about it.

Joined: Nov 2021
Posts: 5
Benni Offline OP
Member
OP Offline
Member

Joined: Nov 2021
Posts: 5
Thank you for your reply.

I am trying to be patient. I'm just feeling really sure it's cancer.

I'm a planner and need to plan ahead as much as possible.

Joined: Oct 2012
Posts: 1,274
Likes: 6
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,274
Likes: 6
Benni, Even if it is cancer there are stages and yours might be a Stage 1 and quite treatable. I understand you would like to be prepared, but it’s a bit early for your doctor to suggest a hospice. There may be a number of other options. Did your doctor mention radiation and/surgery? If you really would like to know, the best is to go and visit a hospice, although during the pandemic, they may not let you inside. You might ask the staff there directly what they do for a patient who is there for pain management, what they allow or not allow. Also, talk to the nurses and staff at the hospital you might be treated in to get a full picture. Wishing you all the very best.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2021
Posts: 5
Benni Offline OP
Member
OP Offline
Member

Joined: Nov 2021
Posts: 5
Thank you for your suggestions.

I don't want radiation/surgery, just pain management. Then let me go on, finally pain-free.

(Why am I not being emailed that I have a reply waiting?)

Joined: Mar 2002
Posts: 4,778
Likes: 12
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,778
Likes: 12
Your desire to plan things that you have incomplete information on is not going to be useful. By now given the date in your last post you likely have an answer from the biopsy. Let us know what that is.

Not even knowing that you have a cancer, its stage and ability to be successfully treated, talking about pain management and hospice is VERY pre mature. Wanting to get set up for dying when IF you have cancer it might be curable makes little sense. You will also find it problematic especially in your health care system for any doctor to put you into hospice care with a treatable disease. It doesn’t work that way, they won’t do it just because you might be more afraid of the treatments than the cancer itself. It breaks an ethical code, and the system won’t allow it or pay for it. Doctors are not allowed to prescribe pain meds and not treat. That is unethical. They can certainly do both legally and keep you as comfortable as possible through treatment. But prescribing pain meds to a patient that refuses treatment is not going to be something they will or can do legally without repercussions.

When you have a definite diagnosis, please come back, post again and let all of us here help you through the process of treatment. You don’t have to do this without support. It if all you wish is to quit a life that is livable, because the idea of treatment seems problematic to you, there nothing we can do to help you. Life is worth fighting for. Please do not spend your days planning your death. This post may seem harsh, but you are asking us things that there are no answers for.

Last edited by Brian Hill; 12-25-2021 08:47 AM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,778
Newest Members
TBurr, JosieK, Trudy, Jbs, Rarexs
12,799 Registered Users
Forum Statistics
Forums23
Topics18,000
Posts196,091
Members12,799
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5