Hi, people I really need some advice.

As posted before I went for my radiation oncology appointment and was a little concerned at how new he was. I have since discovered he has written a number of papers and studies and was described as very smart by one of the doctors who work with me that happened to go to medical school with him. In short he may not be very good with people but he apparently knows his stuff when it comes to radiation treatment.

Today I called to see if my simulation CT had been arranged and the likely timing for the meeting with the medical oncologist. I spoke to a secretary, she stated due to insufficent staff to program the IMRT and the delay this would cause I am being put on the standard radiation treatment. This will enable my treatment to start sooner.

I will not be seeing the medical oncologist for three weeks, I may get an opening soon if someone cancels.

I have already called my cancer center social worker and she will have the head of the department call me to explain what is going on.

Arrangements are being made for the IV contrast CT to happen on Friday.

Question: Is there a huge difference between these types of treatment?

If I am gross disease free is it really just a matter of preserving normal tissue that would have recommended IMRT?

Currently I am considered Stage four due to local metastasis left side nodes and left tonsil no right side and no distant metastasis, How much of a factor is a delay of a few weeks.

I will ask the Doctor these questions and any others you guys suggest.

Hi Paul --

Do you have any earlier CT scans from which the doctors can evaluate the rate of progression of your cancer? This might make them feel more comfortable with a delay, as IMRT is considered a big improvement over conventional radiation re organ preservation and targeting. Don't be hesitant about asking hard questions about comparative side-effects of the two approaches.

My husband Barry has stage IV as well, right tonsil (removed w/ clean margins except 1 cm of tumor left on base of tongue), also mets to 2 lymph nodes on right side. He had a CT scan last November when one of those nodes was diagnosed as an abscess, and Hopkins compared these with CT scans from earlier this month (post-dx). In 8 months, there had almost no change so the radiation oncologists opted to wait until they could get him on the new tomotherapy machine (sort of a souped-up IMRT). That wait is 3 weeks post-simulation (which was last Monday) and everyone is comfortable. But if it had looked like things had been moving aggressively, they would have gotten him onto the IMRT in 2 weeks. (Two weeks seems to be about the standard time needed post-simulation to do IMRT planning).

Gail Mackiernan

Hi Paul. Sorry you have this skunky cancer. I am recieving standard radiation. My onco/ radiologist prefers it for certain cancers.

My neck is red but not blistered or particularily sore. My throat was worse the second two weeks than now. I have a two card read area on my throat and it does not go below my collar. I have 13 treatments to go.

Have you asked your team if the standard will be just as beneficial as the IMRT in your case? It seems they want to begin right away. My understanding is IMRT takes longer to get ready and begin whereas I was in treatment in a month and if not for the second biopsy I would have been in treatment within 10 days of my surgery.

You need to have a consult with your physicians I would say.

May God bless you,
Barbara~

Hello Paul, I would suggest that this is the time to check for better options. I can't say that your IMRT plan was much different than standard in terms of what was going to be radiated, but if you can get IMRT you should experience less long term effects, and in some cases this difference is huge (like no saliva ever again versus having a good amount of saliva within a year). The fact that they simply changed your treatment to suit their schedual is a red flag in my mind. You have other options nearby, I think you should pursue them tommorow.

I echo Mark's sentiment that this is an indication that the center may not have your best iterests at heart.

On the other hand, if it is a treatment decision and not a conveinence decision, you might consider the change.

I've learned you have to be firm and sometimes agressive to get the best treatment.

A Radiation Oncologist with whom I consulted on the phone early on told me something I'll never forget, he said: "Michael, no one is going to care about your health more than you."

see post below--this one had too many typos!

I'm going to erase the above post because the typos were so bad

Paul, Have you had surgery already? There is some data out showing that there is a higher liklihood of recrrene if the delay between surgery adn the LAST day of radiation is more than 100 days. This is especially true if you are Stage 3 or 4 and have a couple of other risk factors.

Now, in this paper that reports the data, none of the patients had concurrent chemo--are you going to have that? Also, it was done just looking at several years of patient trecords, no random assignment of patients to be in an early radiation or late radiation group or anything (can't imagine that would be able to be done in this case since it would hardly be ethical) and the sample sizes of the different groups were vastly different so all that's to say I don't think the 100 day thing is some sort of written in stone rule. As Gail pointed out, it may be more directly related to how aggressive the particular cancer is.

Still, you may not have much time to get in somewhere else and still gt IMRT in a timely manner--and time is of the essence. I would be quite annpoyed, if I were you, if they are moving you off IMRT just because of convenience. They should have told you earlier if that was an issue so you had the max amount of time to find another place.

My assigned social worker left a message stating the head of the radiation oncology will be calling me, if not today (and it is now 6pm so i guess not today) tomorrow.
I am annoyed and scared, no disrepect to anyone on this board but I have neither the financial resources nor the ability to just jet set around to various cancer centers leaving my wife to look after our two young children. If I have to travel because it gives me the best chance at survival then I will but I need more information.

I had surgery June 10 when the cancer was found, I had my tonsils out July 1. I was told I was having IMRT with concurrent chemo. The IMRT was going to be a lower dose to preserve normal tissue. I was not told if it was considered more effective. From what I have read having both (Radiation and Chemo) is considered to have better results

Paul
Hi
In the UK we do not have the freedom with in our health service to travel around the country getting extra advice, (maybe not always a bad thing as not all Docs agree) But for what it is worth, I trawled this site to give my self a crash course in oral cancer, and the main points that related to my staging, this empowered me to absorb the suggested treatment plan that I was given (which I never doubted for a moment, the phase, slegdehammer to crack a nut springs to mind) So take a deep breath and read and learn, I fully appreciate you will need to be near your family, this doesn't always mean second class treatment, many of this forum have had good treatment close to home.
So my advice take all the facts you can from this site, write it all down clearly and then one by one get all your questions answered to your satisfaction.
I also hate people who leave you hanging overnight!!!!!
Sunshine... love and hugs
Helen

I wish things were easier for you Paul. Just having this crappy disease is hard enough. I didn't have much in the way of money either. I live on a pension from my late husband but thank God I still have good health insurance. My doc sent me to a really wonderful ENT who I had seen years ago and trusted. The ENT did the biopsies and then the surgery and sent me to the Onc/Rad and he introduced me to the team. I asked them every question on earth until they begged for the duct tape to shut me up.

I feel like I am doing all I can with what I have and it thats not enough then I guess its not enough. My treatments are 20 minutes away and I am confident that my cancer is on the way outta here even if I can't go to a CCC.

I will be praying for you Paul and for your family.
May God give you strength,
Barbara~

I'm right in there with Mark. To tell you that they can't do IMRT because they are understaffed blows my mind. I would run out of there as fast as I could and find a real treatment center. Are you going to Roswell?

A few weeks shouldn't make a difference. There are huge differences in QOL between XRT and IMRT.

Paul, I cannot agree enough that you should look elsewhere if you can.

And Barb, you bring up a very good point. I din't go to a CCC either, but I had a very experienced surgeon and plastic surgeon, and a very experienced rad operation as well as medical ongologist. And that was 3.5 years ago. Just an aside, I saw the IMRT treatment plan worked up for me and it was 1.5 inches thick! Bottom line, a CCC is great if one is available, but saves are being made every day in good hospitals. With all our urging that people get to CCCs, I don't want those folks who are being treated elsewhere to feel they are not necessarily getting good treatment. Even in our small town (where I was not treated) we now have IMRT and a head and neck cancer specialist. Things, they are a changin'!

Edited to add that there were well more than 100 days between my surgery for Stage IV dx, and the end of my rad/chemo. And I am here to tell about it, so that should not be considered a hard and fast rule.

Paul, I mean this with all the respect of and for you: Your wife and small children want you here in the next 20 years. Don't let anything get in the way of you receiving the best treatment you can find. Hitchhike to the next place if you have to. (I am not being glib) I am dead serious. I am not talking about jetseting for fun! This is serious crap and you don't need some $6.50/hr scheduler ruining your life.

IMRT is not just available at CCCs -- it is considered the standard of treatment at many larger local hospitals as they acquire these newer machines and train their staff. You might want to check this out -- in suburban Maryland for example, both of our closest general hospitals offer IMRT and a friend went to one for his advanced prostate cancer because (at his age) he was just not up to driving 35 miles each way to Hopkins 5x a week. He is doing fine and was very impressed with the treatment team which included oncologists from the U. of MD medical school.

So you may have other options...

Gail Mackiernan

Has anyone had the RADPLAT treatment. This is where they place the Cisplatin through IVs direct to the tumor, and then radiate. Can this be couple with the IMRT? or PBT?
Can anyone discuss this path?
Mark

Well it is 7am July 22. I have worked a night duty at the ME's and been kept busy unfortunately. I have an 8 am appointment at the so called cancer center at the U of R. No-one from the Radiation Oncology Department called me back to explain why things were being changed. I am tired feel crappy and I am not in the mood to discuss the finer points of radiation oncology treatment planning. At this point unless something stunning occurs at this appointment I believe I will be seeking an opinion from Sloan Kettering in NY City.

Hi Paul --

Both ACS and NCI strongly advise getting a second opinion on any cancer diagnosis. This is both on the pathology and staging and the proposed treatment. In fact, some insurance carriers require it. It is NOT a slur to your first doctor to seek such an opinion; when we went to Hopkins our doctor freely gave us the names of 2nd opinion consults (we went to Sloan) and the same thing happened last year with the prostate diagnosis. (In fact for that we got 3 opinions as Barry's treatment options were much greater).

I did google several articles last night which compared IMRT to the older technologies and these seemed to reinforce the advice others have given you to get IMRT if you can.

Best,
Gail

Paul, the other thing about getting a second opinion from a top cancer center is sometimes, if the rad oncologist there is willing to talk diorectly to your local treatment place, it can shake them up enough to give you the treatment you need. Getting the second opinion I got from Dana Farber, and the fact that teh rad. oncologist there was willing to talk directly with the chief rad. oncologist at Roswell Park, got my entire case reconsidered by the rad. oncology group at Roswell and got me the treatment I needed (using IMRT to spare the parotid) at their new extension here.

I can relate to needing to stay locally but I'd suggest you look around at other places than U of R. I just found out that the tiny hosptial in Cortland NY now is getting IMRT! There may be some other smaller places nearby you as well. At the very least, do try going to Roswell Park for a second opinion.

Today I saw Dr. Chen, nicknamed the head and neck cancer queen by the social worker. She was very nice, very professional and when I had finished explaining what had happened to me, she apologised she said she would personally take my case over that I will be getting IMRT albeit delayed by a week. When I mentioned getting a second opinion she just wanted to know what records I needed. I liked her positive attitude, she said because I am "gross disease free" I have a much better prognosis than my staging implies. The radiation regime post surgery is also likely to be a lower dose preserving normal tissue better as well. She also said chemo was not necessarily required but what did I want. I said hit it with everything you have got. I see the medical oncologist Aug 9.
I had a simulation and they made the mask. I also had the CT with contrast. Do you ever get used to that bizarre feeling and taste when they put the dye through you?
In short it would appear I have some time to consider my 2nd opinion options. Thank you everyone for the help and advice so far.

Paul, My husband was treated at a CCC (ranked #13 USNews) and we were rather dismayed with the radiation department there. Just learning about options at the time (and about cancer for that matter), we learned about IMRT and, of course, wanted that treatment for him. Their policy is to use IMRT for patients not having surgery but to use standard radiation for post-operative patients. He had surgery, and I had read the following study "Intensity-Modulated Radiation Therapy for Oropharyngeal Carcinoma: Impact of Tumor Volume" done by M.D. Anderson among others and published in May, 2004, and basically went in and begged the R.O. to give him IMRT. And he did. I later found out that another local cancer center (not a CCC)gives IMRT for post-surgery H&N patients as standard treatment. In talking with the R.O., the impression I got was - 1) this particular CCC didn't feel there was sufficient evidence of better results for post-op patients using IMRT, 2) a lot of their patient's insurance doesn't cover it (??ours considered it medically necessary), and 3) it took a more resources and time to do IMRT rather than standard treatment. But as I said, he did give him the IMRT treatment. In the study I mentioned above, it covered 74 patients (tonsil, base of tongue, and soft palate), 70% of whom were Stage IV (93% were either Stage III/IV). Patients (43) in the study who had both surgery and IMRT had a 92% 4-yr est of DFS rate, a 95% est of LRC rate, and a 94% est of DMFS rate. Only 4 of these patients had chemo. Those who had IMRT with no surgery had a 66% 4-yr est of DFS rate. The study also breaks things down between Gender, Subsite, T stage, Nodal Status, AJCC stage, Fraction Size. It also profiles the side effects and percentages of these for both Acute and Late Toxicity (skin, mucositis, xerostomia, trismus) From what I've read this is one of the few large studies done regarding the use of IMRT specifically. This study also documents the outcomes of eight other studies done using standard rad with variations of +- surgery +- chemo. The Disease Free Survival (DFS) rates are all much lower in these other studies than in the Anderson IMRT study.

I'm 7 months new to all this and I don't really know how you are supposed to view the results of one study - but personally, I liked the odds on this one. Our CCC apparently doesn't view this study's IMRT patient outcomes in the same light that we did.

Just a quick update, I have my appointment at Sloan Kettering for Aug 4 and will be seeing a medical oncologist. Thankfully jet blue have a schedule that allows me to fly there and back in one day and still make it for my night shift at work. I have some serious homework to do to make the most of this appointment.