| Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | Well, it looks like it may be my turn to manage round 2 and I may need some help and hope. I have felt pretty fortunate so far, but this normally strong guy is actually shaking a bit as I write this and think of what I might be in for next.
I had my 2 year PET in February (which was a little inside the 2 year mark). All was clear except very minor uptake in a node under my arm which my team will monitor. In early March I coughed up a tablespoon or two of blood. Had a CT scan at an urgent care center that morning of the lungs which showed a couple of nodes that were not too concerning, but coughed up a small amount of blood a second time about a month later. I kept my CCC team in the loop and had a pulmonary consult as well as a visit with the ENT nurse practitioner. Pulmonary Dr, was also not too concerned but set up a surveillance CT in a couple of months.
Here is the concerning part. The ENT nurse scoped me this week and saw a couple of abnormalities in the lining of the throat. She said it could just be inflammation but spoke with the ENT Dr. who said we needed to do a biopsy which is scheduled in just over a week. It is not to hard to connect the dots from coughing blood to an abnormality in the throat to deduce that there is a recurrence.
To say I am scared is an understatement given what I have learned here and other sources about recurrences. My quality of life has been excellent since treatment and I cannot imagine giving that up. Assuming it has been detected early and is operable, it looks like surgery is the primary mode of treatment.
I realize more information may be necessary, but can anyone offer any insight into what to expect? Words of realism and/or encouragement?
Thanks in advance.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | 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 | Unfortunately, it's wait and see until the results of the biopsy are in, which is not an easy process to deal with. It could be as you think or any number of things, and hopefully is something minor, is treatable. Many here, including myself, had recurrences, I had 7, and was successfully treated for them. These days there are all types of treatments, including immunotherapy, surgical approaches, and radiation, including reirridation, so have hope in that if it's needed. You may want to occupy your time, exercise, read, a hobby or anything else that may help you.
Good luck with everything.
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: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | Paul,
Thanks for the thoughtful words and response. Looking at what you have gone through I hope to summon some of your strength.
Jasper
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Jasper, I too agree with Paul. You do need to wait for the biopsy and the results. I know that you can only conceive of a recurrence, but it could be a number of things. Inflammation from reflux, maybe grazing from some food. I have been in this situation so I do know how this feels. Get the biopsy done and go from there. Don't borrow sorrow from tomorrow. I also want to reassure you that if this does come back as a recurrence there are plenty of curative intent options. My husband Kris, had his recurrence and Salvage surgery over 3 years ago now. This was with curative intent and he is doing very well. Thinking of you, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | 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 | Jasper, if you need strength or anything else you will find it, plenty of support here too, plus you did before, even for non cancerous life events most likely. I wouldn't say don't worry, have fear, I do, to me it's a normal process, not a negative trait as long as it doesn't paralyze you, and shows concern for your own welfare. Who needs strength anyway lol, we just do what we gotta do sometimes.
Hope you enjoy the rest of the holiday weekend!
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Jasper, I know it is easier to say than do but the fact is no further medical diagnosis is forthcoming until the results of the biopsy.
My observation here for two years daily now is that coughing blood is not that common. Most initial symptoms do not include coughing blood so hold good thoughts it is something else. And of course there is the old standby - "it's not cancer until is proven!"
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: 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 | As everyone said it could easily be something else... hoping your path is clear... hugs and fingers crossed.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | I am coming late to this thread and in the meantime the point I would like to make has been made -- it is NOT cancer until a biopsy says so. It is upsetting but there is no point in scaring yourself until the reports are back. Immerse yourself in a favorite pastime until you go for your appointment.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jason, sorry for the ramped up stress right now. That sure makes things extra tough. I had some similar findings on scoping and also have been coughing up blood, sometimes significant amounts, going on 6 years now and with biopsies, scopes, scans, exams, nothing has progressed. The doctors seemed to freak out intially but I have settled into the wait and see routine.
I'm hoping you get some results with good news.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | All,
Thanks for all the right encouragement to get in the right frame of mind over the past week. Your responses were truly helpful and appreciated.
I need to get the full report from the ENT, but they biopsied three areas which showed inflammation in one spot, dysplasia in another and a mucous globule (??). The recommendation was to monitor and look again in 6 months. Again, I need to get the full report to be clear on the degree of dysplasia, but assume it is mild if they are monitoring 6 months out??
I searched the archive posts, but I am unquestionably concerned and again seeking any information, thoughts, realism and encouragement.
Thanks.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | |
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