Previous Thread
Next Thread
Print Thread
follow up #197848
02-08-2019 07:55 AM
02-08-2019 07:55 AM
Joined: Aug 2018
Posts: 230
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 230
Let's discuss follow up appointments. He went to see the chemo oncologist and doc wants to do another PET scan in 2 months as his sore throat makes doc wonder if he really is cancer free or they just biopsied the wrong spots. This is the doc he wanted to hurt because doc got tired of his fighting the system and refusing to use a feeding tube, he was called a 2 yr old! The doc was right on spot. Yesterday he said he's not going back to see the oncologists anymore because the ENT doc is the one who is doing something for him with therapy to avoid his neck turning stiff and helping him eat so he can have the feeding tube removed. oh boy.

what is the usual schedule to see docs and how important is follow up? He says they just see him to make more money. Considering the fact that I work really hard to be healthy and avoid doctors, I'm not big into going to doctors but I would think if I had something serious, I might be more likely to keep close tabs with them until I was sure the crisis was completely over. I'm curious to hear other's thoughts on this since many of you have been there done that for quite awhile dealing with cancer and the after effects of treatment.

Last edited by ConnieT; 02-08-2019 09:07 AM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: follow up [Re: ConnieT] #197849
02-08-2019 08:36 AM
02-08-2019 08:36 AM
Joined: Jun 2013
Posts: 332
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 332
alabama
Whose words are those, actually? The doctor's, or your husband's? Or were you there to hear it? Because I've yet to meet a doctor who'd outright admit a possible mistake by saying they might have biopsied the wrong spot ... and I'd be reluctant to go back to one who'd make such a wrong error, too. That's scary. I can see them being concerned his throat is still so sore, though given his care of it and the nature of treatment, it may very well be normal for his healing progression. Hard to tell.

Having scans along the recovery timeline is normal. Expected, actually, just to make sure they really did get it all. It wouldn't mean they didn't do a decent job the first time ... only that some got away, or was missed. Cancer's a nasty slippery thing. So having him do a scan in a couple months is perfectly normal. I'd want it sooner if they really thought it was cancer, but if he's got that much natural soreness going on, it'd light up for all of that and it would be hard to tell what's cancer and what's just reactive while healing. I don't know how they decide on that ... ask the doctor. If there's a true concern, surely sooner would be better, to do something about it?

(And I did have doctors who made errors in my treatment but refused to say one word in acknowledgement of the possibility that they might be human and mess up ... which is why I asked what I did. Others were more honest about odds and careful with their words ... and incidentally, better doctors, sigh. You never know, though.)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: follow up [Re: KristenS] #197850
02-08-2019 09:05 AM
02-08-2019 09:05 AM
Joined: Aug 2018
Posts: 230
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 230
When he got a letter with the PET scan appointment time and place, he said he wasn't going back. He did tell me a few days after the appointment that they aren't sure whether the cancer is gone or not. The ENT did the biopsy and this doc is the oncologist. Husband is trusting the ENT because the speech pathologist is doing something for him (his words). I've learned a lot about husband during this to forgive myself (He is one difficult person, no more blaming myself). I was not at this appointment.

He is focused on getting that feeding tube out and wanting to move on with life like it was before. I suppose we would all be that way to some extent but I'm wondering if that is a wise decision to just throw all the other doctors to the side at this point. I personally would want to feel more solid about my health before shunning the doctors that treated me. I will say he has still not accepted that smoking and chewing tobacco might have contributed to his cancer. He does live in a world of denial. He tells people he got it from having HPV16. Maybe that's true, but I kind of doubt that's the whole story.

Thanks for your thoughts KristenS. As usual, my head is spinning as this is not a path I wanted to take nor ever have or would wish on anyone else.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: follow up [Re: ConnieT] #197851
02-08-2019 10:35 AM
02-08-2019 10:35 AM
Joined: Jun 2007
Posts: 10,346
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,346
PA
Thanks for the update, Connie! Your husband is so determined to slam the door on his cancer and go back to his usual lifestyle. He is one of very very few who at only 4 months post rads is physically able to return to his former lifestyle. Almost all OC patients are still struggling at that point. Even at 6 months most are struggling with the dry mouth and taste changes.

On your signature it says your husband smoked/chewed tobacco for 38 years. Any patient with that long tobacco history is in denial if they think their tobacco habit didnt have something to do with getting OC. Even if he is HPV+ he could still have gotten the cancer from all the poisons in the tobacco. Unfortunately the cause of peoples cancer usually isnt anything cut and dry with so many variables with environment, nutrition, lifestyle, and his own body chemistry. I was a long time smoker who knows it was the cigs that got me and I quit cold turkey never to take even one little puff again. Anyone who continues to use tobacco after having OC is tempting their fate, but sadly that is their choice.

As far as the PET goes, it can pick up any irregular spot over about 2 cm. After treatments, its next to impossible for any doctor to give a guarantee the patient is 100% cancer free. All it takes is one teeny tiny cell to be missed for the cancer to begin regrowing after rads. The rate of growth will vary greatly so its not possible to even predict how far out someone is before that missed cancer cell will have grown to be picked up with the scan. Its up to your husband if he doesnt want to to get the scan or continue to be monitored by his OC docs. Its usually 5 years doctors will continue to see their OC patients before they can consider them to be cured. For me, it wasnt easy to accept I wouldnt ever really know for certain I didnt have cancer. After much thought on that subject I decided that I wouldnt waste any more of my time with the "what if" thinking and worrying about recurrences. Worrying has never cured anyone and cant change test results so "what if" thinking is counterproductive. It wasnt easy but I put it all behind me and moved on to rebuild my old life, what I could still salvage of it. Thanks to Brian and the kindhearted and encouraging members of OCF who have helped me significantly my life now is very different than how it was before OC. In many ways its so much better now!!!

Glad to hear you are doing well and taking good care of yourself smile


Christine
SCC 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 smile
Re: follow up [Re: ChristineB] #197852
02-08-2019 12:26 PM
02-08-2019 12:26 PM
Joined: Aug 2018
Posts: 230
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 230
Thank you Christine. I was coming back to edit my post because I was worried someone would be offended that I equated his tobacco habit with his OC. I know some have never touched tobacco and get OC but I was hoping to convey my frustrations with denial and that's what i want others to see. He has a problem connecting dots on his behavior and it has frustrated his adult children as well...kind of like, duh...that's so obvious considering......

I don't know if he will continue to follow up with doctors, it's probably 50-50. If he has another scare, he will probably go see them but if he doesn't, I bet he stops seeing them. He rarely does maintenance on anything in life and seems to enjoy chaos. To each his own. I'm not like that but it's a pattern he follows with vehicles, house stuff, health, etc.

I appreciate all the info that I get here. I like to hear options and what's par for the course so I know better when to pursue something and when to let it go. I have told him repeatedly that he is so fortunate compared to many. He has no idea as he has not educated himself on anything about this OC up to this point. The only foods he has issues with are ketchup or anything with vinegar burns and sugar doesn't really taste sweet anymore. THAT IS IT! I feel sorry reading how much others struggle with this.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: follow up [Re: ConnieT] #197859
02-12-2019 05:51 PM
02-12-2019 05:51 PM
Joined: Aug 2018
Posts: 230
C
ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 230
the latest self treatment. eating whole pies! oh my. anything to gain weight so the feeding tube will be removed. he must not use the feeding tube for 2 weeks for it to be removed. the amount of trash taken out weekly now blows my mind. my adult daughter and I could have gone weeks without taking out trash while he was sick because we eat whole foods...little waste! frozen meals, pie pans, etc. lol. It is an issue as we got 20 inches plus 7 more inches of snow in the last week or so and I don't know if I can get the trash can to the road for trash pick up!

I don't agree with this form of nutrition (or lack thereof) but you all know my opinion matters not so I"m just watching the show.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.

Moderated by  Eva Grayzel 

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,346
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,744
Gary 3,552
Newest Members
rajbl, Alex bughis, Pineapple, MST, Ady
12122 Registered Users
Forum Statistics
Forums23
Topics17,537
Posts193,867
Members12,122
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1