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Jitters again over staying here or

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

going to a big Cancer Center.

I just got my NPC Stage III diagnosis last Tues., and even set up appointments for the Radiologist and the Oncologist next week. At first I was thinking that since they have an IMRT here, and because the chemo seems pretty much standard for this that I would just stay here for treatment.

Now...four days later, I'm rethinking again...there are darn few HNC patients in this whole valley, I might be stretching it thinking there are 10. This is small town Montana with a Medical Center. I started feeling uncomfortable the last couple days regarding the radiology...I don't want to be the first NPC person he's ever done, but I don't know if that's a legitimate worry. Is it? I have the appointment so I'm going to go and talk to him...

I have no idea what to ask...it's like going to a physics class and trying to think up a question. Would some of you help me by sharing questions you asked before radiation?

I'm starting to feel a little frantic...like enough time was wasted just getting a diagnosis, and now I'm the one spinning like a top. I want to feel confident in my Dr.'s...but after dealing with the ENT's office...the last thing being my ONLY referral to the Oncologist and the Radiologist was their numbers written on a presciption pad and I was told to give them a call. Both of those offices were taken back by the lack of a real referral....they both asked "Is Dr. O referring you? We don't have anything." I sure don't get the feel of a "team" working together to keep me kicking.

p

KTeacher
Posts: 924
Joined: Jan 2011

I didn't have to wait long the first time, my cancer was very aggressive. I live in the central valley in CA, not known for great medical care. My ENT sent me to Stanford, I had surgery the next week. When it came to radiation, I had that at home (rad onc was trained at Stanford). I do not regret having IMRT at home. No, the surgeon and the radiologist didn't seem to have many conversations. I went back to Stanford for mets surgery and back home for radiation.

D Lewis's picture
D Lewis
Posts: 1528
Joined: Jan 2010

Yes, right now it will feel like you are moving in slow motion. Right now it will feel like none of your doctors are talking to each other. This is what I experienced. And you will repeatedly encounter doctors who are taken aback by the actions of other doctors.

You DO have enough time right now to put your fears to rest. A couple more weeks will not adversely affect any outcomes.

For me, I took myself to the Stanford Cancer Center. I t
telephoned Stanford myself, and asked for the appointment. They took me right in. I needed to send them my available information, PET-CT, bloodwork and all that. You may need to go to your local doctor or hospital and sign a release to have them send the information out. A phone call might do. My first appointment at Stanford was at their weekly "Tumor Board" meeting, which is exactly where you will want to be. Every major cancer center does this weekly Tumor Board consultation, so you can find it anywhere.

After reviewing my files, Stanford was pretty confident that I could be successfully treated at a smaller center. For a good friend, his NPC was dangerously close to the back of his eyeballs and up against his brain. His recommendation was to receive surgery and treatment at Stanford and he did so. Both of us have had equally successful outcomes so far.

I would encourage you to at least have a consult with a major cancer center. It may be enough to convince you that treatment at home will be successful. Sometimes you have to make a bit of a fuss to activate the home team.

Deb

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Might consider going to Missoula for an opinion, Phrannie, and treatment. They are tied to the U of Montanan, and St.Francis hospital. More convenient for you, and the likelihood of better care may be significant. For my money- I like the entire concept of University Drs and hospitals as being state-of-the-art, as they are teaching med students on how to get done the best current treatment possible, and those med students are looking over the shoulders of those Drs- who don't wanna be remembered by their students for any failures.

As for your experience with communication- my ENT office took care of everything to get the Onco and Rad team together, including the initial appointments.

And, you might need to consider how well your current Onco and Rad Drs are prepared to deal with the side-effect experience ahead of you. I don't know that they're not, but I can tell you my team knew where I was going long before treatment started, which is why I got the Port and Peg before any treatment, and why my Onco told me on my very first visit with her that I'd be on Morphine. Yes, they were very wrong about how fast I would get to there, but they did know I would get there. My C&R regiment was likely not what your's will be, so don't compare my extreme to you.

Also, Phrannie, there is the limited Rad issue- the Rads really need to be done right the first time, as the throat tissue can take just so much of the Rads, and then that's that.

Were I you, and had any doubts about my team...go to Missoula, Phrannie.

kcass

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

to Missoula...it's only 120 miles away...but the University of Montana isn't a Medical Teaching University. The closest we have to here is in Seattle, the University of Washington, which is only 500 miles...The Seattle Cancer Care Alliance is also on my contact list...I do want to at least talk to the Radiologist here, tho...It may just be that he'll suggest I go somewhere else...and actually do the referral. The ENT's office is the only one I've found to be so disorganized, and nonchalant.

When I go to the Rad Dr., what else should I ask him besides how much radiation will be going directly thru my mouth. (I know I'll ask him "how many NPC patients have you had?")...but there has to be other things to ask, besides how many treatments. Maybe what he says will generate questions in my mind...and hopefully at the time I'm sitting there and not two hours after I leave.

I'm so glad to see you here...you are a spirit lifter!

p

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Reason I mentioned Missoula is the Montana Cancer Institute, there, and I thought what I read showed ties to the U of Montana. U of Iowa is a teaching hospital center, so I kinda assumed that would be the case w/Montana. Sorry. Seattle is nice in the spring time, I hear, Phrannie. Still think a major place being involved is a good thing.

As for questions, I would ask more along the lines of:

1) How many places are you going to zap with the Rads?
2) Then ask if your mouth will be getting any.
3) If the mouth does, then ask about damage to teeth. A good Rad will know the Rads destroys the protective coating of the teeth, as well as altering the saliva function, which is the body's way of cleaning the teeth.
4) The Thrush question, and Flouride Trays.
5) Also about the mouth- loss of gum tissue, and potential problems. Delnative, God rest his Soul, helped me a lot in understanding this issue.
6) Is it the Rad Dr's experience that you'll have available a med help to get you thru the Rad sessions, if they stress you too much (I'm a 1/2-tab of Xanax man!). I got a prescrip from my regular Dr for it, not the Rad, when I told him of the maxing it was doing to me on account of a prior throat condition. Others have spoken of such help, when needed.
7) Another fact we learned a couple years back is that the Rad Drs tell us the rads will be gone from us in a few months, but it's really more like a couple years before they're completely gone. Your Rad will probably tell you a couple months.
8) Aquaphor was the must for me back in early-09, but you might ask if you'll be needing anything for your skin (you will).

Am sending you a Private Message, Phrannie, with a starting point to You Tubes on NPC- a bigtime conference of world Drs of H&N where NPC is a subject matter. Dr Lori Wirth does state that at that time, in 2008, the standard of tx is concurrent Cisplatin/5FU and Rads.
Other links will show on the page. You watch the conference videos, you might come-up with a few questions of your own. One might be- "Okay, I got NPC. My survival percentage is only an issue for what- 10-years? 15? Or is it up to 50 by now?" Oh yeah!

kcass

OF NOTE: did a bit of research and found a PDF annual report from the forementioned Missoula facility. In all of 2009 they treated a total of 2 NPC patients! So, what are the odds your locals have ever treated someone w/NPC? FYI. Then again, at least Missoula has treated someone w/NPC

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

as I'm typing this. Thank you SO much!

See? The number of patients seen and treated in this state is what sent me over the edge night before last. After spending time here on the forum, I'm feeling more grounded tonight. I will go see the Rad Dr. here..talk to him...see how I feel about him. For all I know he may have come here from a big hospital (many of the Dr.'s around here moved from the big cities to live in "The Last Best Place"). Nothing says I can't hop a plane for Seattle or Houston if I'm not comfortable, it will just mean a little more waiting (which I'm finding out I'm really bad at).

I've put the UTube vid in my favorites to watch when I get up...my "thinker" is wore out tonight after a busy night at work.

p

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I considered going to a well known cancer clinic in Tampa until I discovered that we had a local rad clinic that was a branch of one of the largest in the country. The chemo is more straight forward than the rads. I seems like most places now have IMRT but the smaller ones may not have the ability to give you the best CT planning and simulation which is necessary for a good outcome. One of the big benefits to the latest generation of machines and IMRT in general is sparing of healthy tissue, especially the parotid and submandibular glands that produce saliva and in the case of the latter mucins. Only recently has the importance of mucins which are mucosal lubricants been fully recognized in limiting xerostomia (dry mouth). From what I understand it is more difficult to spare these glands in NPC cases due to location of the tumor so planning is even more important. My cancer was located in the oropharynx and was not NPC but I never suffered from dry mouth. In fact my sliva production 5 months post is almost normal which I attribute in part to good CT planning. Best of Luck
John

phrannie51's picture
phrannie51
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Joined: Mar 2012

John...when I found that out, I kicked up my heels and thought "alright, I can do my treatment here"...it was few days later that I started thinking that IMRT or not, I might be the Dr.'s first case of NPC...and that's when I started back peddling.

p

jtl's picture
jtl
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Joined: Sep 2011

I understand that you have IMRT but can they do a good job with the CT simulation which is critical to getting the most out of IMRT? If they don't do a lot of them I would be concerned. Do you know what the simulation part of the therapy is all about?
John

phrannie51's picture
phrannie51
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...I don't know what that is...

p

jtl's picture
jtl
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Joined: Sep 2011

It goes something like this:

Before IMRT treatments begin, your patient will attend a preparation session called a simulation. A special computed-tomography (CT) is performed in the treatment position, which will be used to design the treatment plan. Doctors may also mark the target on the patient’s skin with colored, semi-permanent ink or a small tattoo to help them align the IMRT equipment during treatments and may develop special molded devices that help the patient remain in the same position.

Following the simulation, a treatment plan that is right for the patient’s specific needs will be designed. This process may take several days because it will involve input from the radiation oncologist, physicist and dosimetrist. Once it is complete, the IMRT treatments will begin.

Prior to each treatment session the techs will do another CT to get the position just as it was ordered in the simulation. If the simulation is not as it should be the subsequent treatments will also be off target. The reason for the simulation is to get the best combination of rads to the tumor and minimize the damage to other tissue. This is especially effective in minimizing damage to the glands that produce saliva.

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

I live in the same place as Phrannie and there is only the 1 ENT and the 1 radonc.
I am reaching out to someone else in this neck of the woods who chose to go to MD Anderson to see if they will share their thoughts.
I had mixed feelings about staying here for treatment, having worked at a teaching hospital elsewhere. There really are so few NPC cases here.I didn't really have the option of leaving.

Thanks for sharing
Stacey

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

the conversation...you do know exactly how it is here, since you're here, also...the 1 ENT, 1 Rad Onc being all there is to choose from...My mom had her laryngectomy surgery and rads here, and did
great. You did yours here, and are doing great also...I plan on talking to the Dr. on Thrusday at 10:30. My sisters are going, also...and I keep remembering...nothing is set in stone.

p

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

That wasn't exactly how mine was performed...

A lot on here like me, didn't have the dot tattoo. Most if not all that have had rads did get the mask...the dreaded mask. I worried and the anxiety built for nearly three months while going through my initial nine weeks of chemo (cisplatin, taxotere and 5FU) and associated for the time to wear the mask.

When I finally got to that point, seven additional weeks of weekly carboplatin and the 35 daily amifostine injections in the tummy, and the mask for 15 - 20 minutes each day (closer to 30 on Mondays. Monday was the only day the did addtional x-rays or scans to verify the mask fit.

Now they did each day while fitting the mask, went through a strict regime of measurements and checking. That was consistant down to the mm, if it was too lose, a new mask would have to be made.

They actually did make a new mask for me, as the first was made before I started any treatment. After 9 - 10 weeks, the tumor had dissolved and I had lost a little weight.

BTW, a little xanax worked wonders for the first few days of anxiety. After that first week, I no longer needed the meds, I was used to the routine.

Best,
John

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I didn't have a tat either that part of the response was from another site that seemed to explain the pre-rad simulation which was the point I was trying to make. The chemo is so standard that it can be given almost anywhere without much concern but the simulation is another issue.

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

I went for the intial CT at the rad ofc and they made my mask, this was the only time I took an ativan for nerves. A few days after the mask was made we did the simulation with the mask on and IMRT machine. The mask was rubbling my eyelids so I asked the tech if they could cut eye holes and they did, after that it was every day for 39 days, never took anything for the anxiety ..had my own little routine prior to the start, drink of water, spray my mouth with stoppers4, say a short prayer and hold on to a woody puppet from toy story that my neice had gotten years ago in a mcD's happy meal. The puppet is a long story between my niece and I, as silly as it sounds it was like a comfort blanket to me. The treatment itself went by quickly, the techs I saw every day were great and they are their to help you, they can see you on a monitor as well as here you if something is wrong. Also I could tell if the mask was set right on my face by the way it lay on my nose, if that didn't feel right I asked them to unhook and reset...phrannie do whatever makes you the most comfortable during the routine, if's something for anxiety, music to distract ,or whatever it takes, and yes as someone else mentioned there will come a time when they check the fit of the mask, if you have lost too much weight in the face they may have to make another one.

Linda

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I wonder how many IMRT patients know what goes on behind the scenes before we ever received the first treatment. The dosimetry and mapping, ect. All the stuff that gives us a chance to beat this disease and minimize the collateral damage. I was curious so I actually had my rad onc explain it to me.
John

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

My rad doc drew me a picture on yellow lined tablet paper - I still have it

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

They have a very precise mapping and sequence for depth, exposure, etc..

Like many here, I had rads to both sides even though the cancer was only on the right.

Something like 7,000 grays or rads to the right, 6,000 for the left.

IMRT rotated something like nine positions starting on my left...8 - 12 zaps or so in each position.

You get to know the routine very well, along with each beep, whiz, whirl and groan of the machine.

JG

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I was told that they'd be doing a CT first...but until I actually talk to him, I'm not going to say yea or nay on treatment here. I can go elsewhere...it won't be home...but it might just be that I have to sacrifice the comfort of home for the expertise of a Teaching Hospital...and it's not forever.

If they decided to do treatment like you, John...I would do the chemo here at home, and then go for rads in Seattle or Houston. Drag it out longer, but make it easier to plan :). Right now I'm dancing with three Dr.'s and haven't a clue as to what I'm doing...they shouldn't let ameteurs run the show...or least they should offer some leadership...LOL.

p

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Might not be right for NPC, Phrannie. "Concurrent" chemo and rads is the standard for NPC, and that is what I had back in early-09. My first rad session was about a half-hour after they hooked the two pumps up into my Port, and I got those pumps removed about a half-hour before my fifth rad session on day-5. If you watch those You Tubes- yes, they had been studying John's regiment, but "concurrent" was still the standard for NPC. You might wanna advise your team that you are aware of this, compliments of Dr Lori Wirth (private message time).

kcass

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I had concurrent, 8 weeks of Erbitux including the "loading" dose and 35 fractions of TomoTherapy which is just a newer version of IMRT.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Kent,

Remember I had both actually...

I had nine weeks (three week cycles of cisplatin, taxotere and the 5FU pump (worn for four days)).

But then I had seven weeks of concurrent carboplatin and the 35 daily rads. Each of the seven weeks, Monday was chemo and rads day, and T - F was just rads.

JG

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I do remember, John. Reason I noted the concurrent is that it seems for NPC that is the standard right from the get-go, especially with an ID'd Primary tumor that likely needs the rads to be applied ASAP. My Cousin got the same regiment as you, and many others, but his was also not NPC.

kcass

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

I'm not sure of what works best for which scenario, especially NPC....

My ENT basically said for my Tonsil schedule it could go either way, they were pretty close on results (chemo first, then concurrent, or concurrent first, then chemo)... At the time I went through, I guess they figured the chemo first was showing a little better results.

I do believe the rads are more specific for killing a targeted area of cancer, whereas the chemo is more for distant or free floating cells.

But I can say the chemo alone killed the tumor as it had came on fairly quickly and within the second big round of chemo, you could tell definite shrinkage. At the end of round three it was completely gone confirmed by CT.

JG

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