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#147450 - 03/25/12 01:19 AM How to handle "what is the prognosis"?
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 143
Loc: MN
I am always at a loss of words when people ask "what is the prognosis" when I run into people that I haven't seen for awhile or even friends that ask. Is it just me or is this a very insensitive question. Would they realy want to hear (as in some cases) that it doesn't look good or in our case that we don't really know but are praying for a complete healing. Is there a good answer without appearing rude? I know it wouldn't be good to give very many specifics since word travels fast and things get so distorted. We already had that happen in that people heard he lost his voice completely and thankfully this is not true.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#147451 - 03/25/12 04:24 AM Re: How to handle "what is the prognosis"? [Re: terrib]
msmac Offline
Gold Member (200+ posts)

Registered: 05/01/11
Posts: 266
Loc: california
That's a tough one. I actually never had anyone ask me what my prognosis was but several people said things like, "but they caught it early so you'll be fine, right?" I never knew how to respond to that since "they" didn't catch it early and I had no idea if I would be fine or not. Maybe you could just say, "we are very hopeful that he will make a complete recovery," or "we have a great team of doctors working hard to make him well."
_________________________
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.

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#147452 - 03/25/12 04:39 AM Re: How to handle "what is the prognosis"? [Re: msmac]
Pandora99 Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Registered: 09/14/06
Posts: 1319
Loc: Winnipeg, Manitoba Canada
It is an incredibly insensitive question, and I have had it asked of me many times. You know that thing about "just ask me directly...don't talk behind my back" - well some people take that to the extreme. I always think that when they ask that they are trying to determine how THEY can help - what level of assistance you might need. As much as I hate the question, I do understand family and close friends asking.

For acquaintances, I replies like "none of us ever knows do we...and that's a good thing - heck, we don't even know that we'll get home safely today!". or "well my doctor said I'll die of this cancer, or I will die of something else". The later usually gets a chuckle and gets over this question without divulging any info.

I must admit when I hear someone talk about "well they have a great team of doctors and we are hopeful, etc, etc, I tend to read into that a poor prognosis". But, maybe that is just me.

Good luck.

Donna


Edited by Pandora99 (03/25/12 04:40 AM)
_________________________
Donna,60,SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 10 yrs from 1st dx, 6 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! Cancer does not eliminate vanity - I would still rather be 59!

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#147454 - 03/25/12 04:59 AM Re: How to handle "what is the prognosis"? [Re: Pandora99]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4847
Loc: Toronto canada
I agree with pandora - family definitely has the right to know but people in general - just tell them No one knows...you don't even know if you'll get across the road safely today and drs may hazard a guess based on education, but no one can say for sure.

Take care.
_________________________
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

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#147457 - 03/25/12 10:28 AM Re: How to handle "what is the prognosis"? [Re: Cheryld]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2580
Loc: TN
Re how to handle "What is the prognosis?" I think that is a rude question to begin with, so why are we worried about not giving a rude answer? Probably because of all the really nice, compassionate people here, who hesitate to offend anyone even when others offend us. IMO I think it depends on who is asking and what their reasons may be. I agree that family or close friends deserve the truth. If it's someone connected with whether you get your job back, or the Social Security Disability people, words need to be chosen carefully. And I am so glad this question was brought up, because it will help anyone who may be presented with this question in the future to be well prepared with a great answer! I wish I had been better prepared when the SSD interviewer asked me, (with my son sitting next to me) "Is he terminal?" In comparison, "What is the prognosis" could be construed as expressing concern and wanting to help in some way.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147458 - 03/25/12 01:22 PM Re: How to handle "what is the prognosis"? [Re: Anne-Marie]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
I come from the opposite end of the spectrum and couldn't bear the "is he going to die?" question written all over people's faces. Instead of enduring their discomfort whilst they fished around asking questions that might be inoffensive but gave them no assistance as to where the playing field was, I preferred to address the elephant in the room directly.

Like this forum there are some that gravitate towards the support and others that go for bald facts. Some find the information too confronting and others feel empowered by it. I personally found it empowering most of the time but there were weeks when I just couldn't read some of the posts for fear of what I might discover.

My approach was the complete opposite to most other posters so far and whilst I appreciate that at least half (maybe more) the population would think this question rude, I was glad to hear the question which allowed me to answer just as directly.

I think the answer has to come down to how individuals feels about the question. If you think it rude, then a simple "we are in very good hands and hope for the best" should send a clear message to the insensitive souls such as myself that the line has been crossed and that a little less directness is in order.

For myself and Alex, I would let people off the hook with "do not concern yourself that you might upset us - there is nothing you can ask that we havent already considered ourselves. If you are prepared to hear the bad and the ugly, then ask anything you like".

The advantage of this approach was that people were given a realistic picture of what we were going through and this helped me at work as sudden brain snaps and uncharacteristic tears were immediately understood and catered to.

I think there are times when we are our own worst enemies with minimising the issues to the point where people cannot possibly understand as they are given sanitised information by the very people best able to educate them.

Although I must share with you the reaction of the "scaly mates" from the local hotel (hearts of gold every one of them!). They would greet Alex and I when we came back from the doctors with something inane like "lost a bit of weight mate" which at the time was the understatment of the year but acknowledged in their blokey way that they were paying attention. The second Alex went to the bathroom, one of them would lean over to me and say "so, how is he really?". Now for some this might be offensive, for me it made my heart brim that they cared enough to consider Alex but could see straight through his upbeat platitudes.
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#147462 - 03/25/12 04:45 PM Re: How to handle "what is the prognosis"? [Re: klo]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 487
Loc: NW Ohio
I guess I also have to think that people are only trying to express their concern, and don't really know how. I have a very good friend that always just says "I've been thinking of you." which really covers a lot. I believe that people care and want to say something. I was pretty upbeat before I had my surgery and my treatments, but it might have been because I was pretty clueless. My doctors all tried to prepare me, but I still had no idea what it would be like until I actually went through it. One man who is a member of our church, told my husband, "I am praying for Georgi, and I don't pray for everybody!". I loved that!
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive
surgery which will involve lifestyle changes. Surgery on April 9. Still have a long journey ahead.

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#147464 - 03/25/12 10:55 PM Re: How to handle "what is the prognosis"? [Re: zengalib]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1281
Loc: Sydney NSW Australia
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
Surgery GIST 8/2013

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#147931 - 04/08/12 12:35 AM Re: How to handle "what is the prognosis"? [Re: Gabe]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
My standard answer is. " I am alive and happy and that is all even you can ask for." I will live thru this and longer.
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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