| | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I also agree with Liz, but I have another question. Why is it YOU telling your Mom she has only six months? Why aren't her doctors telling HER this. Then she could make a decision to seek a second opinion, etc. I don't understand why a doctor would withhold this info from her.
MD Anderson and Sloan Kettering are usually considered the top two centers in the US but there other top rated facilities also, Dana Farber and Johns Hopkin also come to mind. There are also many in California, but I'm an east coaster. I'd seek help from her doctor as to which would be best for a second opinion for her particular cancer case.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | I totally agree, she should know but the doctor never told her and he wasnt going to tell me and my family but i asked on my own...
The doctor wants her to get her strength back so that they can look at other options and or trying chemo again,... shes way to weak .. and i think thats why the doctor didnt tell her because if she gets her strength back we have some options...
That being said, shes extremely weak, she cant even lift her arm, and since that appointment shes really been pushing herself to take get more energy and strength through increased feedings.
If she can get another treatment in say next month, at least we have some options.. We are meeting the doc again in the second week of feb and if he feels at that time he needs to tell her, he will
I am sure my mom has an idea but why break her spirit.
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Eileen,
We are in the process of getting second opinions,
We have contactred MD Anderson, they should have an answer for us in a week on my mom's case.
Sloan Kettering and Hopkins is next on the list.
As for the time, 6 months, I asked on my own. I dont think he was planning on telling us, and the 6 months is based on "patients" at my mom's stage who are no longer able to recieve further treatment.
We have an appointment next month and My mom will be strong enough to try a treatment or two. She has increased her Cal intake from 1000 to 1500 and by this weekend she should be at 2000, in 3 weeks she should be able to convince the doc on another treatment or solution...
H
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This just doesn't make sense to me. If she is too weak, and she is that bad, why no appointment until February sometime. All Drs let the family know without having to be asked whem someone is critical. Some thing seems kind of fishy here.
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
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Yeah, I dont know
This is why I want a second opinion. When we saw the doctor in December he said lets give her a break.
They did a CT scan, now shes very weak and hes like shes to weak to continue. Now he wants us to wait another month.
They only did 2 rounds of chemo and there hasnt been any reaction. Is 2 rounds of chemo with no result enough evidence to show a patient is untreatable?
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Eileen,
I'm sorry but your description in your signature line is a little hard for me to understand. Has your mom already had radiation back in 2006? When was the re occurrence confirmed? What has been done to her since that time?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | My mom had surgery back in 2006 and they removed 30% of the tongue. In September 2007 a lump was found in her neck, the CT scan showed small spots in her lungs.
They did 7 weeks of radiation and 2 rounds of chemo for the neck/lungs. They confirmed that cancer is growing back in the mouth on Jan 14, through the ct scan...
since Nov 27 or something she has had no treatments for the mouth, neck, or lungs. Before they wanted to give her time, now shes to weak and now they want to meet in another month ..
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I had 30% of my tongue removed on Aug 3rd. At a follow up visit I told the Dr about mt tonge bothering me and that there was something on the opposite side from the surgery. It came back on both sidesand there is no waiting involved. My teeth were pulled the 17th of Jan and I will be getting rad seed implants very soon. Then start chemo.. I hope they don't wait too long to check your mother.
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
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Son,
I don't understand why they think she will get BETTER by waiting a month or whatever to get treated. She needs attention NOW or their won't be a later. You need to make some real loud noises and get her the attention she needs ASAP.
Last edited by davidcpa; 01-22-2008 02:47 AM.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | David ,i am geting confused here,it was my understanding that they didnt tell her she would get better,and that herson was told she had about six months.Please feel free to correct me if i am wrong,but herson has several differnt threads going on different boards so i may be way off beam here.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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