| | Joined: Feb 2010 Posts: 5 Member | OP  Member
Joined: Feb 2010 Posts: 5 | I'm so happy to have found this forum. It's now my safe haven! I'm the proud daughter (oldest of 5) of Karen. She is so brave; however, I imagine that's for display purposes only. I know she stays positive for her five children. It's been 2.5 years since she was diagnosed and her life changed forever. She has learned to live with a PEG, without a tongue, but most importanly without cancer! Unfortunately, I think that may have changed. Her November PET scan was clear, but having lost weight and not feeling well another scan was ordered and done in January. This one showed a hot spot in her mouth and spots on both her lungs. The doctor was quite honest and said he suspects both are cancer and are stage 4. We're awaiting a lung biopsy to confirm his suspicions. Everything I'm reading paints a bleak picture. Is this common to spread to the lungs??? Treatment options??? Anything at all is helpful! Thanks for letting me get all that off my chest.
Daughter/Karen-
Pre-exist cond: Erosive Lichen Planus
DX: 7/20 (age 52)-Stage IV SCC; Gloss (75% tongue), Rad Neck Dis w/6+ nodes positive, Par Mand Resec, Free Flap, PEG
8/20-11/07-Chemo/Rad
1/08-11/10-PET clear
1/10-PET showed hot spot in mouth, spots on both lungs. Awaiting lung biopsy
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | people hear have been in similay conditions.All of these can be attacked with Cheno, curgery, rads at al. Get the best doctor you can trust.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | 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 | Hi Karen
spread to the lungs is quite common and its not always as bad as it sounds,quite a few people here have suffered this setback only to find that the spots on the lung were scar tissue from rads and if they are malignant response to chemo is quite good,so lets keep our fingers crossed for some good news.
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.
| | | | | 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 would like to wish you mother and her 5 offspring the best of everything possible and will say some prayers for her. Kelly, I love you because we type the same way. LOL Be proud of your typos Mam.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | I will keep your mom in my prayers. Sounds like an amazing woman and mom!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Feb 2010 Posts: 5 Member | | OP Member
Joined: Feb 2010 Posts: 5 | Thank you all for the kind words. The Pulmonologist? is looking over the scans to determine if a lung biopsy is even an option. It depends on if they can can extract a large enough piece to biopsy and if the biopsy will adversely impact any other major organs. The waiting is tough as you all know!
Daughter/Karen-
Pre-exist cond: Erosive Lichen Planus
DX: 7/20 (age 52)-Stage IV SCC; Gloss (75% tongue), Rad Neck Dis w/6+ nodes positive, Par Mand Resec, Free Flap, PEG
8/20-11/07-Chemo/Rad
1/08-11/10-PET clear
1/10-PET showed hot spot in mouth, spots on both lungs. Awaiting lung biopsy
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Monmais, Please have hope. PET scans can be too sensitive(ie false positive).
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | The waiting is hell. No other way to put it. Try not to let cancer steal these days while you are waiting. It has certainly stolen enough time from your Mom and your family. Do something special with each day - truly live in the present - it is all ANY of us has.
Looking forward to an update - you are in our thoughts and prayers.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Feb 2010 Posts: 5 Member | | OP Member
Joined: Feb 2010 Posts: 5 | Hi all ~
Just wanted to give an update. Have been awaiting a date for mom's lung biopsy. Unfortunately, the pulmonologist said he won't do it. Having looked over her scan and records the risk of puncturing her diaphragm is too high. Now we're waiting on the recommended course of action from her oncologist. Without a biopsy, how do you know or choose what or what not to do??? Also, the cancer that has returned in her mouth is causing a lot of pain so it's a priority to get that out. Ughhhh!!! So confused! It certainly doesn't help that I live in Louisiana and she is in Memphis!
Daughter/Karen-
Pre-exist cond: Erosive Lichen Planus
DX: 7/20 (age 52)-Stage IV SCC; Gloss (75% tongue), Rad Neck Dis w/6+ nodes positive, Par Mand Resec, Free Flap, PEG
8/20-11/07-Chemo/Rad
1/08-11/10-PET clear
1/10-PET showed hot spot in mouth, spots on both lungs. Awaiting lung biopsy
| | | | | Joined: Feb 2010 Posts: 5 Member | | OP Member
Joined: Feb 2010 Posts: 5 | Hi all ~
Just wanted to give an update. Have been awaiting a date for mom's lung biopsy. Unfortunately, the pulmonologist said he won't do it. Having looked over her scan and records the risk of puncturing her diaphragm is too high. Now we're waiting on the recommended course of action from her oncologist. Without a biopsy, how do you know or choose what or what not to do??? Also, the cancer that has returned in her mouth is causing a lot of pain so it's a priority to get that out. Ughhhh!!! So confused! It certainly doesn't help that I live in Louisiana and she is in Memphis!
Daughter/Karen-
Pre-exist cond: Erosive Lichen Planus
DX: 7/20 (age 52)-Stage IV SCC; Gloss (75% tongue), Rad Neck Dis w/6+ nodes positive, Par Mand Resec, Free Flap, PEG
8/20-11/07-Chemo/Rad
1/08-11/10-PET clear
1/10-PET showed hot spot in mouth, spots on both lungs. Awaiting lung biopsy
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