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#132198 03-29-2011 08:03 PM
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I've been reading now and then at this forum for weeks and decided I should sign in. Maybe my initial reluctance was part of that response of denial. If I don't post on a message board for those with oral cancer, then the fact of it seems less real. Maybe that was a subconscious part of it.

I suppose another part was being a bit in awe of some of the strength of will being shown by some of the folks whose messages I read here. I felt a bit like a guy complaining about dealing with the drill sargeant in Full Metal Jacket while some of you were fighting in the rubble of Stalingrad. When I've felt furious at the way I was treated by my doctors and what I'm going through, I could read your messages and get back some perspective.

I never suffered a moment's pain from my cancer, not for a second and not the merest scintilla of discomfort. I was at the dentist's office last May and the assistant noticed a lump behind my upper left teeth. It looked like a wayward wisdom tooth. My dentist refered me to one doctor who I asked point blank, first question over the phone, "Is your work covered by my ****** insurance?" He said yes. It turned out, somehow, no. There followed two weeks of insane runaround and back and forth all while I'm supposed to casually walk around with the knowledge of possibly having cancer.

Finally, I get directed to a ENT doctor at ******. Fine. I don't really care. I have no idea which doctor is better. As long as my insurance is paying. This doctor sees me, hmms and "ah, yes"'s and sends me for a CAT scan. I wait an extra hour because the woman at the desk checked me in but forget to actually check me in (sort of like the car rental place 'reserving' a car for Jerry Seinfeld). The images come back and my ENT doctor shows me the 3D image of my "very well defined" growth. This doctor told me point blank that rather than just take a biopsy, he would remove it.

Period.

There was no discussion of anything else being a possibility. Not a syllable. I was to find out this was not the case.

The first operation, in July, was, frankly, a piece of cake. One moment I was counting down from 100. The next I was waking up and getting ready to leave. My mouth was a bit stiff for a couple days but that was it. The test results came back and showed the dreaded "positive margins". To my surprise and yes anger, I was informed that the doctor did not just remove it, that other scenarios were possible. As merely the patient I found that I didn't make the need to know cut to be told that.

The second operation in August was, again, a piece of cake. The test results that were supposed to come back in 7 days. 19 days later, no one had contacted me. No one had said a word to me. I happened to be in the doctor's office for an allergy shot when one of the nurses came up to me all cheery at bumping into me. No one apologized to me. Golden Rule? As a mere patient, I guess I was just expected to suck it up and accept 12 more days of uncertainty whether everything was over with or I needed more cancer treatment.

There were, again, positive margins at the edge of the removed material furthest from the inside of my mouth. Thus began a nearly 4 month whirl of doctor visits. I was referred to a doctor in Boston who was supposed to be so good as to be able to remove that remaining material without creating a hole from my mouth through to my sinus cavity. Ater "hello", I think the first words out of his mouth were that he'd have to create a hole from my mouth to my sinus cavity. I saw an oncologist in Boston. I saw an oncologist back here in central MA.

The explicit consensus of all of them was that having the operation to create a hole from my mouth up through to my sinuses to remove any remaining cancer (then wear an "obdurator" to fill that hole then hopefully have a second operation to close it) or having IMRT radiation treatments were equally likely to leave me cured. It was my choice as to which I wanted to have done, which set of negative repercussions I wanted to deal with.

The oncologist here in central MA was the guy with whom I spoke the most. He was much more personable than any of the others and seemed genuinely sympathetic when I bitterly complained of how the ENT guy had misrepresented things to me before the first operation.

Based on what he said, I decided to go with radiation treatments. So, of course, bitterest of all possible ironies, I discovered that the oncologist had misrepresented the nature of my radiation treatment to me. I cannot describe, without the use of expletives, my feelings toward him. To put onself forth as mister sympathy over someone not divulging information to which I was entitled and to then misrepresent things to a much greater degree is still breathtaking to me.

I had 33 sessions of IMRT radiation, eight bursts of radiation each time, starting from behind to the right and working progressively around to behind to the left. My last treatment was February 4th.

I feel like I'm slowly but fairly steadily progressing. I can blow my nose again. Right after treatment was done, the tissue separating my mouth from my sinuses was so weak that I couldn't form any sort of seal.

I'm still somehow very much down on how much mucus I get from my sinuses. My nose is constantly very dry. I'm still very much down on how much ear wax I produce. My sense of taste is improving. Salty tastes came back quickest. Luckily I'm not devoutly jewish or muslim as ham quickly became a go to meal. Sour and sweet tastes have partly come back but taste is still a bit iffy. Hair is still gone from the back of my head and mostly gone from my beard area. The latter doesn't bother me at all. The former bothers me. My mouth is very dry. I can't talkto anyone for more than a minute without needing water. I wake up with roughly the same moisture in my mouth as I would expecte had I been crawling across the Mojave the previous day. I can't eat without water or something in the meal to make things moist. My voice is also deeper but in a raspy way. I was told to expect to get back 70-80% of salivary function but I'm nowhere near that.

I lost something like 12-15 pounds in the course of the IMRT but I wasn't heavy. I ran 7.3 miles the night after my 8th treatment and ran it hard. But when I tried to run after my 10th I could tell that the best I could possibly do was a couple miles less than that. The loss of strength in just those couple days and treaments was absolutely clear. Shortly after that our wonderful new england weather made running outside impossible anyway. But starting right at the end of treatment I got this perplexing puffiness to each side of my mouth and down to my jaw. Between this and the loss of hair at the back of my head I look like shit.

Well, I've used this as therapy for long enough. I'll just finish by saluting the incredible strength of will that so many of you have shown. Your examples are inspiring.



Last edited by JamesinMA; 03-29-2011 08:19 PM.
JamesinMA #132215 03-30-2011 06:53 AM
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James welcome to OCF! I hope that thru your weeks of reading on the forum you have absorbed all the info about the different treatments surgery and radiation. Im sorry you went thru such a long run around. Bottom line is---are you cancer free right now? No matter where you were treated or how, the most important thing is that the cancer is gone. Everything else is small potatoes.

Cant go back and change anything that has happened. No sense in being bitter about things like the person who didnt check you in and you had to wait longer. It certainly sound like you have alot of anger towards everyone associated with your journey. Many cancer patients see therapists and take anxiety meds. Even their caregivers need those tools to recover mentally from the horrors of cancer.

I wish you all the best with your continued recovery.


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
ChristineB #132233 03-30-2011 12:23 PM
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James, it sure sounds as though you got a bad deal from some of those docs. Jeesh, you'd think they'd understand what you were going through emotionally at least and treat you better.

But as Christine says, that's all in the past. The main thing is that the RT worked, which I'm going to hope it did. All of those symptoms you described are pretty much textbook and I had them all. It's going to take quite a good bit of time for the excess mucous to go away. The dry mouth will take longer, even up to a couple of years to establish itself at your new normal.

I'm nearly at the 2 year point and I still basically take a swallow of water with everything that's not very wet. I gained 4 extra notes at the bottom of my vocal range, this was after not being able to speak at all for a couple of months followed by a gradually returning voice.

The hair on the back of my neck eventually grew in... mostly. Think it might be a bit less than I had, but I just keep it longer back there. Beard hair returned everywhere but below my jaw on the side of my neck dissection.

Hang in there. Things will continually get better, albeit slower than you'd probably like!

David2


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
ChristineB #132254 03-30-2011 05:31 PM
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No, I don't have anger toward everyone associated with my treatment. That would be ridiculous. Most of the nurses I've encountered have been wonderful. I bear them absolutely no ill will. Quite the opposite. I gave cards and gifts to the nurses directly involved with my IMRT treatments. They were terrific. It was probably a mistake to even mention the one time I had to wait an hour for no reason. It seems petty or as though I'm fixated on it. But there were a half dozen other ridiculous little occurrences that I didn't also cite. The net effect was exasperation at a sometimes bizarre lack of consideration. I felt like I had to cite one of them and that was maybe the easiest one to recount briefly.

Probably a better one was the time I visited with the ENT doctor and he said that upon leaving I should have the woman at the front desk schedule either the CT scan I had or the PET scan, I forget which it was. So, I left him, went out front and told her what the doctor had told me. She typed a bit on the computer and then said that the appointment wasn't going through to the office a few miles away where they did the scans, for whatever reason. I asked what I should do then. She told me to wait a week. I thought this was awfully vague. Weren't these scans more tightly scheduled than that? "No," she informed me. "They'll call you in a week to schedule it." I looked down at the phone on her desk inches from her hand. "Couldn't you just call them now?" I suggested. "They'll call you in a week!" she declared more forcefully before adding "Next!" to bring along another peasant. I'm not sure why anyone needs a week to gear up to make any phone call. I regret not standing there and politely demanding that she take 30 seconds of her time so that I didn't lose a week of mine. But I didn't. We would never treat people like that in the company for which I work and we only do civil engineering and land surveying work not try to heal sick people. There was just too much bizarre lack of consideration at points in the process.

As for bearing tremendous enmity towards the doctor who, really, misrepresented both himself and the treatment I underwent. I think I would be insane if I did not feel this way toward him.


Last edited by JamesinMA; 03-30-2011 05:33 PM.
JamesinMA #132262 03-30-2011 07:38 PM
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I am sorry you went through all that, but you are now past that and are obviously learning to deal with the long term effects of radiation and surgery. I don't know who told you that you get back 70-80% of saliva, but that certainly has not been my case. I always say if they find my body and no water vessel is near me - suspect foul play! I even sleep with a flip top water bottle in bed as I wake many times each night to drink.

As far as what you have been through - I once heard a marvelous quote of Winston Churchhill's. I may misquote, but the essence of it was "You will never get where you want to go if you stop to throw rocks at every dog that barks". Think about that. Let the past be just that - the past - and focus on getting well. Glad to have you here. Vent away anytime.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
JamesinMA #132289 03-31-2011 07:36 AM
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Hi James, the initial few weeks after RT are hard physically and emotionally. I'm agraid it will take some time before saliva/mucus gets any better. I'm now 8 months after RT finished and things are still slowly improving. I can eat most foods without drinking and when I struggle I need only a tiny sip of liquid to help things along. We all react differently so your experience won't be identical to any other but try to keep in your mind that you are in the lowest point regarding the side-effects of RT. As I write this, my mouth feeld pretty good, plety of saliva and not too thick. I'm a keen cyclist and the first time out on the bike I has to keep drinking because my mouth was so dry from breathing hard. Exercise does encourage saliva and I remember the ridiculous joy when after weeks of dribbling gunk on my shoulder when trying to spit, I finally managed a proper spit. So keep your spirits up and try to be patient.


Diagnosed Early April 2010 SCC left tongue t3n1
PEG insertion 26th April 2010
Patial glossectomy with flap from arm and left neck dissection 28th April
20 sessions of radiotherapy in June
PEG removal Today - yippee! 19th Nov
Martin_UK #132300 03-31-2011 12:07 PM
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I'm surprised your doctor didn't get into detail about radiotherapy - usually they are very up front about it - even my surgical oncologist warned me!!! He pretty much said you did really well with surgery - radiation won't be anywhere near as easy - then I researched and asked questions and attended meetings about it! They were all offered by my hospital - I would say you have a right to be upset about being not told - but one thing I have learned through this journey - you have to advocate for yourself! Asking questions will not hurt!!! Now that you are done and recovering - let go of the anger- it serves no healthy purpose - focus on you and getting better!!! Sorry if I sound a little like yoda today - having a zen moment! 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
Cheryld #132318 03-31-2011 04:20 PM
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James, I'm right there with you. The bedside manner of some of these doctors is terrible. Sometimes I see the commercials for Cancer Treatment Centers of America and wish I had gone there. My insurance wouldn't pay for treatment there. Nor would they let me go to Mayo in Jacksonville. I had an invite to live in the new house of a friend who's mortgage I just closed for them. Fishing on the beach every day after treatment instead of schleping through the snow in Boston (I hate Boston). On a more positive note I do feel like I am getting some of the best possible treatment here. Yeah, they are arrogant know it alls who seem to treat me like a $$$ sometimes, but if they can cure me better than someone who was "freindly" I'll take it. On the subject of $$$, I picked up some pain killing mouthwash today. It was $51.50. My co-pay was $50. $462 a month for health insurance and they paid $1.50. My wholistic doctor says "don't sweat the small stuff". It's probably the best advise I've gotten outside of this forum. So...welcome to OCF. Let me know if I can help you in any way. I'm right by Beacon Hill at MGH. Will Zinn


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
MaineWill #132322 03-31-2011 04:57 PM
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Hi James!
After reading about your experiences I just had to respond because I soooooo know what you are going through and how you feel!!! I have been the poster child for "medical mistakes" since 2002. The most serious of which (having occured twice)was the misdiagnosis of my cancer and secondly the "late" action taken. My mistake was not seeing an oncolgist from the very beginning and relying soley on the "expertise" of 2 different surgeons. I now know that the best approach to this disease is a "team " approach at one of the best cancer hospitals! On top o f that (if that isn't enough) I have been battling numerous infections gotten in and from my hospital stays for 2 years now!!! This battle has cost over half a million dollars!!!!!! thank God I had good insurance!!! These infections almost killed me. I've learned that you have to speak up for yourself. Do it nicely but do it! Don't let anyone get away with not doing their job and doing it right....even if it is in making a darn appointment for you! Hang in there! You are not alonoe!!!
Marianne


dob 12/22/45
2002 DX SCC Stge 4,tumor lft sde tongue,surgery

2005 recur Stge 4 tumor lft side tongue
surgery, flap, XRT
2010 recurr. Stge 4, tumor rt sde tongue
surgery, flap, chemo, radiat. Port, PEG
2010 Peritonitis, liver abc., bacter. infections
2011 Exposed jawb. HBO
marianne bartkowski #132329 03-31-2011 08:41 PM
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James,
Welcome and thanks for your post. It made me laugh more than once.

All of us to some degree have been there including waking up feeling like we just crawled across the Mojave desert and I still have that spot in the back middle of my hair line that just won't grow hair!

Fortunately most of the other stuff is history, but frequent follow-up with the cancer center doctors has become a way of life.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11


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