| | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 60 | I don't as yet have a good gauge on my husband's cancer. The ENT said very little and seemed a little surly when I asked about the stage. I'd already irritated him by asking to read the chest/abdo CT. We've only seen the rad onc once. He has an appointment with the med oncologist in 10 days.
My husband doesn't really want to know all the details about his tumor so I have been a little restrained with my questions up to this point. I am hoping once we are immersed in the cancer care system that I can ask all my questions privately. He won't mind that.
I want to know things like is it the tumor that is making it hard for him to open his mouth or is it all the dental work. Is the tumor extending into his tongue and causing it to deviate when he sticks it out or is that a nerve problem. Is the tumor the reason they couldn't do the rigid scope panendoscopy / bronchoscopy? And just where exactly does the tumor extend? Is it resectable or not?
How many positive nodes is considered a lot? I have read postings related to neck dissections and people mention x nodes removed and y nodes positive but I'm wondering how many would be considered a lot.
I forced the ENT to name it as Stage IV, I read the intraoperative biopsy report to know it is "large" and know enough to understand it is extremely serious. I'm not all that invested in the idea of getting a prognosis because it all hangs on response to treatment and there is no way to know that yet. I guess I'm just trying to figure out what would be considered a bad sign and what comes part and parcel with this type of cancer. I don't need to be carrying around any extra fears, you know?
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | | 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 | We are not qualified to make these calls for you but I would say that with nodes affected on both sides it's worse than just one side. Seven is also a lot compared to most that catch this cancer at this stage. Most important thing is to begin the Tx that has proven to be the only way to stop this cancer. I would still press to have his cancer cells tested for HPV. Note this is a separate test and is not routinely done.
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 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 | Hi yes I have to agree with david - 7 nodes bilaterally makes it more precarious - however his HPV status is very important - since the HPV responds much better to chemo and rads- if he is HPV+ this can make a difference in the type of chemo (recent studies have shown Erbitux is not as affective against HPV + cancers) and the number of nodes involved may have less weight then. It's very hard when the person with cancer doesn't wasn't to know - the dr may not be legally able to discuss with you the details privately as there is a patient confidentiality issue at play - you husband needs to make it clear to the dr. That he is to share all details with you - and then maybe you can have a private sit down. Also a warning flag always pops up when I hear the words surly (especially when a patient is asking questions) you have an absolute right to know and get the answers that are answerable!!! Drs who don't like to be questioned, or get upset when a patient wants a second opinion, or seem dismissive or threatened when a patient has done their homework - in my eyes - are insecure - most good drs - who know their stuff, welcome both questions, and a second opinion. Good luck... This is a sucky thing to happen before Christmas - I had my diagnosis the same time last year... Do push to get things moving ASAP ! And take care!
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: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 60 | Yes, David, you are not qualified to make these calls and I am not qualified to evaluate answers from you or anyone else. But as a gauge, I wondered about the sheer numbers because the numbers I am reading from neck dissection people have been fewer. Granted many have had rado and chemo prior to the surgery. And I get it that bilateral nodes bumps up the seriousness. As for the surly ENT, he seems to be the one we will have to deal with the least. I have had minor dealings with him in the past and the nurse in me liked him - he was nice to me and the patients. Maybe he'd rather be taking out (non cancerous) tonsils or drilling sinuses. Cheryl, things are moving along as quickly as possible, I am confident. We haven't waited more than two days for any appointment or test. Even the PET was done before biopsy reports were back. All of this sets my alarm bells ringing. the hold up has been the dental work and required healing time. Makes me crazy that the beast is growing away while we wait. I swear his symptoms are getting worse, too. More ear pain and swelling on the jawline that I don't think is related to dental extractions. I admit to paranoia, though. Side question -- does it annoy those of you who have cancer when us caregivers use words like "we" have appointments? I feel like this is all happening to me, too. Okay........... HPV status. Would have assumed this was routine. Will add it to the list which includes THS, baseline hearing, CBC (done). Where's that notebook for writing things down?
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Laura
You asked:
[quote]Side question -- does it annoy those of you who have cancer when us caregivers use words like "we" have appointments? I feel like this is all happening to me, too.[/quote]
My answer is NO, of course not. My wife came with me to all my appointments and my cancer affected her too. I can't speak for all cancer patients, and perhaps there are some patients whose better self is temporarily overwhelmed by cancer and who would take umbrage at a caregiver using inclusive language, but I don't think you will find any here at OCF.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Laura, it certainly doesn't annoy me. My husband went with me to all of the treatments, etc., and even now goes with me to my appointments whenever I need to get the results of a scan. I agree with Charm that this rotten disease affects both of us.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | The "we" definitely didn't bother me. This happened to me and my husband and we fought it together.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | 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 | I rather think that when you say "we" that it includes all of us on this site!
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: 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 | As a patient, it would be wonderful to hear the words "we have appointments". Having the caregiver actively involved with appointments makes things easier on the patient. Sounds to me like you are on the ball and doing a very good job for advocating for your husband. Great job so far!
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | [quote=davidcpa]I rather think that when you say "we" that it includes all of us on this site! [/quote]
David - great answer! I certainly second it.
Man, I only wish I'd had a "we" when I was going through all that stuff. For me the we was basically my docs and me. But man were they great.
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
