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#138093 - 08/14/11 05:19 PM Re: Wondering if it's worth it [Re: morgan44]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
I'm still gathering my questions for a consult with the RO tomorrow (did I mention I only got to see his nurse last Friday?) My mouth and lips were in really bad shape by then, which she acknowledged and trust she passed along.

I'm anxious to listen to his prognosis, but if he doesn't answer the questions I already have, which include the dosage of radiation I've been given will be reduced, whether the reaction could have been a combination of the radiation and Erbitux, why the bruises from those Erbutux injections (last one 3 weeks ago) are still angry looking, and mention the fact that I can no longer feel the pain on my tongue at the original site of the tumor and what that implies (gone, I hope).

But I'm imploring any of the experts here to hopefully give me a response TODAY to this last question, and that is how often during the several weeks of radiation treatment is a new CT scan ordered to see if there has been any progress, or worse, any metastasizing? It seems to me that should be done at least once, half-way through. But I'm not sure it's standard protocol, or if they just wait until your regimen is finished and then do a scan.

Thanks in advance folks. If no one can get back to me, I'll just ask anyway (of course!).

#138100 - 08/14/11 09:49 PM Re: Wondering if it's worth it [Re: morgan44]
Jenslp Offline
Senior Member (100+ posts)

Registered: 11/24/10
Posts: 167
Loc: Seattle WA
Hey Morgan - I hear that they tend to avoid PET/CT's for a period of time after treatment - usually several weeks - because the radiation and chemo effects can often result in false positives.

Good luck getting all your questions answered tomorrow!

Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!

#138128 - 08/15/11 05:57 PM Re: Wondering if it's worth it [Re: Jenslp]
Eshwar N Offline
Gold Member (200+ posts)

Registered: 05/19/11
Posts: 287
Loc: Delhi, India
Hi Morgan, as Jennifer mentioned correctly, they avoid PET/CT for a period of time after treatment. In practise, this is usually one month from the last dose of radiotherapy.
Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]

#138144 - 08/15/11 11:28 PM Re: Wondering if it's worth it [Re: Eshwar N]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
That is out of my expertise as my tongue lesion was surgically removed. For those who had radiation as their primary method of treatment on this board--and there are many--they should know the protocol on that. But you are well within your rights to ask. Treatment is just not fun, is it?! Neither is it for a time afterwards, even now for me, things are not perfect. But, given the hand dealt, we are playing it, both of us, to the best of our ability, and taking advantage of our opponent--squamous cell oral cancer. If I asked or complained to my RO (my complaint was that the mask was unbearably tight on me at the end as I lost virtually no weight and my hair had grown--found out this summer I had lost some at the back though, now growing out). He tried to make me comfortable, but of course would always say, "you've got to make sure you kill the cancer by getting the target just right". So true. But we were killing/chasing "dust" I'd always think, as surgery supposedly got it all.

I'd be sure to check out Charm's idea on your chemo, regardless of the fact you have not had it as scheduled. Probably you've already gone & this is too late. Sounds like you are advocating for yourself very well.
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

#138162 - 08/16/11 02:55 AM Re: Wondering if it's worth it [Re: AnneO]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9428
Loc: PA
Your doctors can see the progress with the info they show on their screens. Im not the most technical person but I have seen what my doctor would look at and compare previous pictures with. Also you should be seeing the radiation oncologist every week to get a thorough check up. I would see the nurses every single day and my doctor would make sure to say hello everyday and ask me if I was ok. Weekly he would spend about 30 minutes checking me out and talking with me.

The PET or CT scan is usually longer than a month out. Swelling and mouth sores will throw it off. My doc told me a PET or CT scan should be done no earlier than 3 months after finishing treatment or it will show false positives.

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#138278 - 08/17/11 09:31 PM Re: Wondering if it's worth it [Re: ChristineB]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Also you should be seeing the radiation oncologist every week to get a thorough check up. I would see the nurses every single day and my doctor would make sure to say hello everyday and ask me if I was ok. Weekly he would spend about 30 minutes checking me out and talking with me.

I wish my ro WOULD spend more time with me!! Throughout this recent ordeal, he has not seen me once. It's been the NP who first saw a red flag with my red tongue (which she said was too early in treatment to be that red) and, well, the rest is history. So now, a week and a half later, with daily radiation suspended until my mouth healed, I begin again tomorrow and I was the one who finally just told her to pass it along to the doctor that I only intended to do FOUR treatments a week, at least for a couple of weeks, to diminish the risk of this happening again and then having to take a week off. It made no sense. Missing days of treatment are missing days of treatment, and it seems like dividing it into a reduced series back to back would be preferable to an entire week+ of none at all. Of course I had planned to "discuss" this with the doctor, but since he's been a no-show, I just decided I'd lay my cards on the table and if he had any objection, he would certainly have the opportunity to show his hand too. He hasn't.

I'll also continue with the Erbitux, but I was only scheduled for five of those anyway, two of which I've already had.

It does seem as though this team is stuck on rigid protocol (exactly the same dosage and timeframe) for everyone with oral cancers (I've talked to some of the other patients), which I don't like. In spite of every medical entry in credible journals I've read on the topic of designing a treatment program which includes consideration of a patient's current non-related medical history, age, etc., it's one-size-fits all. Apparently there was no consideration given to the fact that I take medication for high blood pressure, have COPD, which by itself is well controlled absent any mitigating factors such as stress, weight, and the like, and of course the fact that I'm 70 years old, my skin is naturally much thinner than it was in my younger years and older people take longer to heal from just about anything. But I'm stuck with it now, so just have to grit my teeth (in my case my gums!) and bear it.

Thanks for all your input.

#138279 - 08/17/11 10:46 PM Re: Wondering if it's worth it [Re: morgan44]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
I am sorry your RO not being helpful (or present). My husband also saw his RO every week for a formal appointment, and told him to call or stop in if there were any concerns.

Is your MO or ENT more communicative? You might want to have a chat with one of them about your concerns - my husband's ENT was the 'lead' and he always said to come to him if there were any problems.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

#138295 - 08/18/11 03:59 AM Re: Wondering if it's worth it [Re: Maria]
msmac Offline
Gold Member (200+ posts)

Registered: 05/01/11
Posts: 267
Loc: california
My RO insists on seeing me at least once per week. It's terrible that yours isn't more attentive. Is he the only RO at your center? You really should be getting more attention. Especially since you are having complications.
I hope things go more smoothly as you continue with your treatment.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
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.

#138334 - 08/18/11 04:55 PM Re: Wondering if it's worth it [Re: Maria]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
When I was on the previous set schedule, I saw the RO every Tuesday following the rad session and then he only did a quick look inside my mouth, but it's only since I had the burning reaction throughout my mouth that he seems to not want to be involved and leaves it up to his nurse practitioner (who is WONDERFUL, btw). I hate to project, but he just may be the type of doctor who doesn't appreciate patients (like me) who do a lot of research online. I usually did have some questions every week, mostly concerning relatively minor issues (like the headaches I experienced after the first week), but again those questions were only because I was not adequately informed of all the potential repercussions beforehand. For example, many here have recommended the product Gelclair for relief from the thick saliva, and when I asked if he could prescribe some, his response was [paraphrasing] that he wasn't too keen on some of these "newer" products. He said to use the Magic Mouthwash which had previously been prescribed.

But good news today. The radiation technicians put their heads together on my particular situation with my lips getting so badly burned, and they cut a hole in the mask so that my lips won't be exposed to the radiation. (Apparently the mask acts as a conductor of sorts??) So kudos to them!! All went well, and we were all smiling for a change this morning!

Maybe my experience is confirmation that unless a patient speaks up and demands at least an attempt at deviation from the rigid protocol, you're stuck with whatever they want to do, whether it's going to harm you or not.

If I had had the option of having treatment at Dartmouth-Hitchcock, I most certainly would have gone there, but it would have meant over a hundred-mile round trip every day, and I just couldn't afford that out of pocket expense.

#147182 - 03/16/12 06:45 AM Re: Wondering if it's worth it [Re: morgan44]
seattlepaul Offline
Contributing Member (25+ posts)

Registered: 02/14/12
Posts: 38
Loc: Washington
Here's a thought: I've regreted most of my actions to some degree, all my life, they could all have been better, if only...
Thru all my 69years(in 2 months), I have been alive to regret, if I had taken some of my other choices, I would not be, other choices I probably would not be, still others, I might not be.
Point is, being alive,and better off than you might have feard, is MUCH better, than chosing a death sentence too soon.

The best way I've found to take my mind off my troubles, is to try to help others, not only takes your mind off yourself, but makes you feel better, because you are trying to help someone else.

like they say, try it, you might like it.
69yo male, Steam Engineer, Me=4,SCC=0, loving wife, living life as it comes (no other option)
We are all born from Mother, but live and die alone.
Make the best of it, Mommie did all she could, daddy was just a guidance councelor, the rest is ALL up to you.
...and now, 3rd occurance: Surgery 5/1/12

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