| | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | It was supposed to be "Happy" New Year. No luck on that. My husband had the three-month followup CT yesterday following the radiation treatment for lung mets on right hilar nodes. All was looking good till the radiologist (or whoever reads the scans) really put his eyes to the scan late yesterday and discovered two more spots on the left side. Biopsy by a pulmonary interventionist next week.
We had a lovely 20-hour hiatus form immediate worry till the return call today.
Not feeling the devastation I felt last April on initial discovery of mets to lungs. Remaining entirely optimistic that there will be another option for a round of treatment of some sort, depending on biopsy findings.
Kids and hubby all out of house right now, so license to write, and cry just a little. Thank you.
Best,
mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm sorry to hear Mary, and hope the biopsy proves only scar tissue or something else. Unfortionately, it's wait and see until then, but otherwise carry on your lives as best you can under the circumstances. Waiting is the worst. I wish you, your husband and rest of your family a better 2014.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | I too am sorry to hear this, Mary. Maintain hope. Even if the spots show cancer I am quite sure there will be treatment.
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im very sorry to hear your bad news! Im sure you are devastated. Please try your very best to think positive.
Best thing you can do is to get your husband seen for at least a second opinion at a CCC. They are his best chance to beat this. Remember, there are several members (including myself) who have gotten thru recurrences.
Best wishes!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | Mary,
I'm certainly not a doctor but here's my story:
At my first scan post Tx (appx 3 months) I was told by one of my cancer docs that I had 2 spots in the upper part of one of my lungs that "could not be excluded" but he said "don't worry" (yeah right) "we'll wait 3 months and take another scan. Three LONG months passed and the second scan showed that the first 2 spots had CLEARED (great news) but 2 more spots that "could not be excluded" had developed in the lower part of the same lung. Doc said "not to worry" (yeah right) "we'll wait 3 more months and take another scan". Three MORE LONG months passed and this scan came back ALL CLEAR.
Hope this repeats itself for you!
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Thank you all for your thoughts, observations and shared personal experiences. They all helped me get through this day (so far) in a far better way than I would have otherwise. I will keep you posted on the tests next week.
Meanwhile i keep going back to the words of wisdom I've read many times on this site: it's not cancer till the biopsy says it is.
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]Meanwhile i keep going back to the words of wisdom I've read many times on this site: it's not cancer till the biopsy says it is. [/quote]Make this your mantra, chanted every time one of those nasty thoughts or worries enters your mind.
You KNOW you are already on a cancer journey, so no need to spend any time worrying about that. You KNOW recurrence is a possibility for any cancer survivor, so no need to worry about that. You KNOW it is not cancer until biopsied, so no need to worry about that.
Naturally, you are stressed and anxiety ridden with worry while waiting but we all manage worry every day. So, just do your best to hold the image of no more cancer until you KNOW otherwise.
Hang in there,
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Well i guess the silver lining is that the biopsy procedure is scheduled for tomorrow morning. I am grateful that we will have answers in 4 or 5 days. These spots were not there 6 months ago so it is incredibly hard to be calm but i am trying.
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey mary there is hope... check out the posting by missymoo in the survivors section. Her dad had lung cancer and oral cancer and another mets and he's NED. I am just not sure if it is lung mets or lung cancer... anyway.. she listed his treatment plan... maybe that is something for you to bring up with the drs. hugs.
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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