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Dad #198322
05-13-2019 06:54 AM
05-13-2019 06:54 AM
Joined: Mar 2018
Posts: 70
Maine
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Vicky1 Offline OP
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Vicky1  Offline OP
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V

Joined: Mar 2018
Posts: 70
Maine
So, we went to see his radiation oncologist today for an appointment after his recurrance and second surgery. She scared us woth prognosis and survivorship numbers. She said something like 30% of the people who have recurrance so quickly are still alive in 2 years and that we need to be followed closely for the next few years. It was an odd way to word it and, of course, it made me cry. I tried to tell dad that I think what she meant was that what happens in the next two years is really important to what the prognosis will be, but of course, he heard "you have 2 years to live." She's waiting to hear from some other head and neck oncologists to see if she'll recommend more radiation, which she doesn't want to, or what. His surgeon seemed really optimistic last month and quite sure they weren't going to recommend any additional treatment, so this was unexpected.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Dad [Re: Vicky1] #198324
05-13-2019 12:45 PM
05-13-2019 12:45 PM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
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K

Joined: Jun 2013
Posts: 345
alabama
I had a recurrence the very same year. It's well past two years for me now. That said, mine wasn't as severe as your father's, either time, but I think those quick recurrences might just mean that there was a tiny bit hiding out that was missed, and the second time is a good way to catch it and be done with it ... not a death sentence. See if that helps him a bit.

Now, my mother had a different opinion, because the recurrence was in the same spot as the original ... she thinks the surgeon missed something. But as all the reports were coming back 'clear margins' as he did the surgeries, I don't think he did. And it helped me to believe that, since I had to rely on him for my tongue surgeries and the neck dissection and some of my after-care. (He's a good doctor.) In fact, I'm still not sure WHY we even did the neck dissection, several months after the first surgery, because all the indications at the time were that we'd gotten it all. He was just that thorough ... wanted to hit all the bases.

Anyway ... nobody can know for sure, of course. It scares me that they seem to stop tracking folks after five years. I've hit that point, nearly, and what does that mean? That we're good to go? That we're not good to go? Or more likely, that nobody really knows. None of my doctors ever worried about giving numbers (not the good ones, anyway ... had one scary guy try to give numbers in the beginning, yikes!). You're right, that does seem a really weird way to word things. Is it possible to have the doctor clarify what he meant? He's the one in the best place to give reassurance, or at least backtrack if he misspoke. He's the 'authority' in this case, so the one best placed to give comfort, since he's the one who introduced the fear in the first place.

That's a bit rambly, but ... you're not alone (or your dad isn't, anyway) ... no matter what they say, it comes out scary. Maybe this doctor can rephrase things and sort it out better.


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: Dad [Re: KristenS] #198325
05-13-2019 02:45 PM
05-13-2019 02:45 PM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,157
Toronto, Canada
Vicky,

I’m sorry that your dad’s doctor was not more sensitive in discussing his treatment. Personally, I always remind myself that the prognosis is at best an educated guess and many things may happen that may change it. Like my husband’s RO said one time, if we were told that 2 out of 10 patients had problems with a particular treatment, before getting upset, we needed to remember that 8 out of 10 patients did not get a problem. I’m not entirely sure what your doctor really meant by 30% of patients are still around after 2 years, etc. What was she saying about the other 70%?

Maybe you could further explore the possibility of getting your dad another kind of chemo (immunotherapy is a kind of Chemo) or the chance of his being accepted for a clinical trial. Keep talking to the doctors and express your dad’s willingness to continue with treatment. What you can do now for your dad is to advocate for him and get him the kinds of help that he needs.

Last edited by gmcraft; 05-18-2019 05:28 AM.

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.
Re: Dad [Re: gmcraft] #198326
05-13-2019 03:01 PM
05-13-2019 03:01 PM
Joined: Aug 2018
Posts: 268
C
ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 268
some docs have little bedside manner. one of my friends was told by his doctor that he was going to die. bluntly said that to him. so of course, my friend continued to drink and smoke. why give it up with that kind of news.

there are better ways to say even hard things. too bad some just don't have the interpersonal skills developed yet.


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: Dad [Re: ConnieT] #198341
05-14-2019 05:59 PM
05-14-2019 05:59 PM
Joined: Mar 2018
Posts: 70
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 70
Maine
It was really upsetting. In fact, it makes me wonder if she knows what she's talking about. She hasn't gotten all the information from his surgeon yet. Why is she assuming he's going to die? It really took the wind out of his sails, too, and he has been struggling as it is to be upbeat with the loss of income, the pain, the quality of life he has lost so far, etc. I'm angry today about it, but still scared.

She is supposed to call with her recommendations. I just don't understand. His surgeon asked if we wanted to meet with his medical and radiation oncologist before we went home, but said it's something they do whenever someone has a recurrence and that he would be surprised if they recommended anything, except perhaps an experimental treatment like immunotherapy. He said he couldn't speak for his oncology team but he said they would likely not advise re-radiation (or re-irradiation... not sure the right term) because it was a small tumor, clear margins, no lymph nodes involved and they caught it super early and were really aggressive removing even the dysplasia.

What would you do if this was you? Should I hear what she says and seek a second opinion? I am worried because it has been 4 weeks since surgery. There's got to be a window of time to decide what to do...


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Dad [Re: Vicky1] #198345
05-15-2019 07:59 AM
05-15-2019 07:59 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Go ahead and start looking for the second opinion, if she's dragging her feet. They always seem to leave a window of time between surgery and radiation anyway (so there's healing of the surgical site), so you must have at least that much time to work with.

((hugs)) Wish we could all do more for you.


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: Dad [Re: KristenS] #198349
05-16-2019 05:18 AM
05-16-2019 05:18 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,157
Toronto, Canada
You can also call the doctor and ask what her recommendations are after she’s spoken with the RO. Doctors sometimes are so busy that they forget or they are thinking, “I’ll do it tomorrow,” and don’t get round to it. Keep them to their word. Even if it is leaving a message with the secretary, it may goad the doctor into calling you back.

Immunotherapy is no longer just a trial. It is now marketed as Keytruda and Optiva. There are always trials out there although the patient has to be screened before being accepted into a trial.

I would go for a second opinion as Kristen suggested, even if it is to hear about another treatment plan. It will give you options.


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.
Re: Dad [Re: gmcraft] #198351
05-16-2019 01:44 PM
05-16-2019 01:44 PM
Joined: Mar 2018
Posts: 70
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 70
Maine
To those of you who had a recurrence, what did you do after your second surgery? Did you have more radiation? Did you do immunotherapy? Did you do nothing more?


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Dad [Re: Vicky1] #198352
05-16-2019 03:16 PM
05-16-2019 03:16 PM
Joined: Jul 2012
Posts: 3,254
NYC
P
PaulB Online
Patient Advocate (old timer, 2000 posts)
PaulB  Online
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,254
NYC
I’ve had 6 recurrences, plus the original cancer. Each time was it was different. My first recurrence, I had radiation only as I was too sick to to anything else, and didn’t fully complete my original cancer treatment, which was supposed to be induction Chemo followed by chemoradiation. Actually, I left my top cancer center after I was in the hospital/nursing home for 6 months from induction chemo, and went back to my original oncologist.

My 2nd, I had cancer surgery only as treatment, neck dissection, mbeing too sick per my radiologist and oncologist, and thought it with be enough. This was back at the cancer center. I kept my ENT from there, but ditched my oncologist there.

My 3rd, I had cancer surgery only. Neck dissection.

My 4th and 5th, I had surgery, neck dissection, with IORT radiation in the OR, and then IMRT and Chemo, Cisplatin and Erbitux, epidermal growth factor, at a different cancer center on my own request. My other cancer center I felt didn’t proposing enough treatment.

My 6th and 7th, I had surgery, neck dissection, and IORT in the OR followed by Proton Radiation and chemo, Cisplatin.

I guess each case is differentso as is the doctors. You can go to three at different and get three different answers.


Last edited by PaulB; 05-16-2019 03:22 PM.

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






Re: Dad [Re: PaulB] #198353
05-16-2019 05:11 PM
05-16-2019 05:11 PM
Joined: Mar 2018
Posts: 70
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 70
Maine
My goodness. I am so sorry you had to go through all that, but glad you are still here. This actually makes me feel a little better. I am still beside myself with worry, but maybe they're not going to just let my dad die, and maybe radiation isn't the only thing to do.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
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