| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Liz, thanks for posting this info. I sure hope I wasn't a findout with thi guy patient when they did those implants. I did have the ENT tell me I was the 1st that they ever did. I like Robin mighht have said forget it had I known that before the surgery then. I just pray that you are doing good as I know you are a fighter 1st class. Keep up the good work for the victims of this World. We appreciate it.
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Thanks for the info Liz...saw the post on FB and came here. You are one tough lady and although the years of putting up with investigations, lawyers and doctors can only be painful, I, as others, truly appreciate your candor in relating the details. Hugs to you...and yes, you are blessed with a new grandchild each year and they are adorable! Thanks for all you do.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Dec 2010 Posts: 14 Member | | Member
Joined: Dec 2010 Posts: 14 | Hi Liz, I'm sorry for your loss and thank you for posting your story. It is So imperative to get a second even a third opinion and I'll tell you why. In 07 I went to my doctor and showed her a lump under my tongue she told me it was a blocked salivary gland. In 09 I went to another doctor actually an ER doctor in hopes they would run tests on it. It worried me and was painful. Still no tests I was told it was a blocked salivary gland and to suck on lemon drops. A week later I went back to my own physician still no tests, she agreed with the ER physican suck on lemon drops. On 1/1/10 I changed from Kaiser to Blue Cross insurance. I went to my new PCH and she immediately referred me to an ENT. The ENT said I had something "very strange" but he didn't think it was cancer. I insisted he do something so in all his wisdom he said he would remove it. It was removed 9/10, results mucoepidermoid carcinoma. Immediate referral to UCSF Dr. Eisele who was very upset at the ENT for removing and not biopsying as he left him with no clear margins to work with and then had to remove the whole left floor of my mouth instead of a smaller area. So the moral of my story is don't trust your doctor and ask tons of questions. Though I must say I trust Dr. Eisele, he is THE BEST in his field, literally.
43,T1N0M0
Mucoepidermoid Carcinoma Int/high
9/10-1st surgery
10/13/10-2nd surg,UCSF Dr.Eisele rmv tumor,L floor mouth excised, muscle moved under chin,skin graft L thigh to cover. Neck disct 16 nodes
11/29/10-IMRT 30under chin
| | | | | Joined: Jul 2010 Posts: 95 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 95 | It is difficult to predict how cancer acts and where it spreads. It depends on it's virulence and varies between patients. Some Drs are trying to see the cup half full rather than half empty. I wrote about the issue of Head and Neck Cancer Spread on my blog at: http://dribrook.blogspot.com/p/general-medical-and-dental-issues.htmlI hope it helps you. Itzhak Brook MD | | | | | 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 | Liz,
You have been thru a ton with this and I admire you for continuing to seek answers.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Liz...your feelings of sharp shock are 100% understandable. I think it would be more surprising if it didn't effect you that way, it doesn't make you any less strong or mean that you have taken steps back in your recovery.
Forgive me if this has been discussed in the past...is there a lawsuit concerning Robin's death? Is that why all this is going on?
Thank you for such an amazing compliment from such an amazing woman. I am proud to know you too. xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
Robin's experience, all that you have gone through since then and your continued support of others have given me encouragement in my efforts to make others aware of the neccesity of not ignoring symptoms and of insisting on prompt and expert care. I go to fb less and less but have been so happy to see that you are enjoying your growing family, may they be a source of comfort and remind you that love never ends.
With prayers for all the healing you need,
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Liz,
Thank you for sharing your story with us. I hope that by doing so you are able to unburden yourself some. It is so hard to relive the most difficult days with this cancer. I admire you for being willing to do that.
My very best to you-
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Liz, you're an extraordinary person to have dealt with all this so bravely. And continuing to challenge and ask questions. Thanks for sharing it with us. I admire your courage.
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Thankyou David
i am just the sort of person who NEEDS to know lol.I find facts much easier to accept than probability,but when i find out the facts they throw up more questions about how things were dealt with so i have more questions.Its how we learn i guess.
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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