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PET scan or no PET Scan

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Question regarding PET scan. So far my doctors have not scheduled me for a PET scan. Should I be requesting one?

Initial testing by my ENT for initial disgnosis was ultrasound of neck, CT scan, needle biopsy, which showed Squamos Cell Carcinoma in my right neck lymph nodes. Then he refered me to MD Anderson. He ordered a PET scan however since I knew MD Anderson would redo any outside tests I cancelled it.

Upon initial evaluation at MD Anderson I have had blood work, chest xray, dental xray, CT scan and right tonsil biopsy and left tonsil removed. BTW right tonsil positive for SCC, left tonsil negative. CT Scan shows enlarged lymph nodes lower down in neck.

The inital course of treatment is going to be Induction Chemotherapy and then radiation (7weeks) yet no PET scan ordered. I am new to all this and confused if I should be asking? It is hard to know what to ask then you don't know what you should be asking. Input on questions I should ask are appreciated. I have read some books, pamphlets but right now this is all so overwhelming.

I am assuming my coordinating Oncologist / my surgical oncologist or a member of my team will explain the treatment plan when I meet with him thursday. I want to make the best choices for my treatment so I am meeting with the nurse on my medical oncology team wednesday to review the chemotherapy plan. But wondered if I should ask about a PET scan or is that usually done later?

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

It does not hurt to ask, my first cancer was found with a biopsy in the nasal passageway so there was no need of a PET, but the second time it was the PET that showed the location of the cancer.

My next PET is tomorrow morning at MD Anderson in Houston Texas. Take care and keep posting.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hi Dragon,
Mark's ENT did not order a PET prior to surgery and treatment. The thinking is, I believe, while it is interesting information to have, it would NOT change the course of treatment. Therefore it is an expensiive, involved test where the information derived from in would not be used in the planning of treatment.
The post-PET...another story.
Kim

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I would definitely ask about having a PET done. I was originally diagnosed with NSCLC in my left lung, one week later they did a PET scan and discovered I had another type of cancer SCC of the larynx. Completely separate cancers not mets. Without the PET they may not have discovered the laryngeal cancer until it had become more advanced and I'm sure that having two types of cancers changed the treatment plan.

I am definitely not an expert (or a doctor ;-) but I would ask about having the scan done. Having two types of cancers at the same time is probably not very common but I would feel safer knowing that there were no other cancers or mets anywhere in my body.

Take care and stay strong,
Glenna

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I'm also definitley not an expert and can see Kim's ENT's logic (somewhat). But I'd ask about getting one also based on my experience at this time. If nothing else it establishes a baseline for future PET scans.

Like others on here, I was diagnosed with throat cancer (right tonsil), and also a lymphnode. They initially performed a CT before anything to help in first diagnose the tumor and tonsil area.

Tonsil cancer STG III SCC HPV+, my treatment plan was nine weeks of Chemo, then seven weeks of concurrent Weekly Chemo/Daily Rads.

After they removed my tonsils and set up my team of the ENT, Onco, and Rads MD's, my Onco ordered the first PET.

That was followed by another PET scan about two months post treatment to see the results of treatment and compare to my initial PET scan. I actually just had my 14 month post treatment PET scan (all clear thank you very much)....

So anyways, if it were me and I knew what I know now from experiences and the expereince of all here, I'd get one if possible.

At least you and everyone else will know what they are dealing with, and how well the treatment worked.

To me, the PET Scan helped in determining the treatment plan that would have the best possible account. If something else is going on in another area, the Chemo mix they have planned could change.

For some on here I see they are doing seven weeks of Concurrent Weekly Chemo/Dailys Rads. For me and others had nine (three week cycles) of Cisplatin, Taxotere, and 5FU, then seven weeks of Concurrent Weekly Chemo (Carboplatin)/Dailys Rads...or for others something closely related.

I'm not sure what determines these differences, local, medical facilities, medicla studies, a combination.

Best,
John

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

My path to treatment was very similar to yours, though my ENT removed my suspicious lymphnode before referring me to MD Anderson. Once at MDA I had basically the same evaluations. My surgical oncologist did not mention PET scan.

Interestingly, when my wife and I met with my RAD oncologist, we asked him about a PET...should I have one to take a look elsewhere for cancer? He agreed with us and ordered the PET scan, basically to satisfy his (and our)concerns beyond head and neck. My PET showed no evidence of disease.

Final dx for me: SCC unknown primary HPV+ T0,N2b (the removed lymphnode had extentions)
Completed treatment 4/230/2010: 7 weeks concurent radiation /chemo (Cisplatin 1x per week)

All the best to you and your journey through treatment.
BTW, I live in Cypress and had all my treatments at the Katy satellite and it sure made it easier than going downtown everyday.

Again, all the best to you and everyone here.
Chuck.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hard call - on one hand, you're introducing a radioactive "invader" into your system. On the other, you get info on whether there is potentially cancerous activity from cells too small to be felt or show up (yet) on a CT.

My doc ordered the PET, and used results (along with CT results) to help define radiation plans.

I would definitely ask about the PET. Then they can explain their reasoning for wanting or not wanting it done. For me, it did wonders to ease my mind to ask lots of questions. Again, like everyone else will say - take another person, notebook and pen and voice recorder with you if you can. And make sure you write down all the questions you can think of before the appointment. Do well.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Please ask docs about their decision on the pet scan. Along with assisting in treatment specs, it also would show any hot spots elsewhere in the body, very important especially at beginning of treatment.

My husband's treatment was very similar to yours - 6 weeks of induction chemo, followed by 35 rads with concurrent chemo.

Best of luck as you begin the journey, and remember, each day that passes is a day closer to the end of it.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

My guess as to why no PET from MD Anderson... It's already been identified in your lymphatic system. BOOM! You just skipped over Go and they're unleashing the full nuclear arsenal. Lymph nodes means stage 3 or 4 and you go right to chemotherapy. It really doesn't matter where else it is. Chemo is total-body. Radiation is done on body parts. They're going after the primary area (tonsils, neck nodes, neck) with radiation and the chemo will slow, stop or kill it anywhere else. I'm betting that after your first round of radiation and some recovery, they'll THEN do a PET to see if they need to continue chemo and hit another part of your body with radiation.

What would they do if a PET showed uptake somewhere else in your body now? Probably give you chemo with radiation to the primary area and then after the first round of radiation do more scans and another PET to see if they want to microwave that second area in a round 2. i.e. The same thing you're going through now.

... Of course this is all just my layman's guess.

Good luck!

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

A pet scan can only get down to to around 9mm with any degree of accuracy. Even then it is wrong 25% of the time. New CT with contrast can get down to the micro nodule size, 2-4 mm. They both have their place but if I could only have one it would be the new family of CT imaging technology. Whoever mentioned baseline is right on, Get a test now to compare to later.

Noellesmom
Posts: 1270
Joined: Aug 2010

My sweet husband of 32 years was diagnosed with hypopharyngeal cancer in May 2010, had CT with contrast to define the tumor and also had a PET scan, which showed no metastases. A few weeks later, when the PEG was put in place the gastro performing the procedure scoped Jim and took a picture. The gastro came out of the operating suite very rattled: although Jim had looked fine a year ago with the scope, this time his esophagus looked very bad and the gastro plans to do biopsies. The question in my mind is if the esophagus looks bad enough to do biopsies, wouldn't the PET scan show any hot spots? Apparently, there is a chance it will not because the biopsies will be done next month, in spite of a "clean" PET scan with only the throat cancer showing up.
Medicine is not an exact science.
Another consideration doctors may have: does your insurance pay for a PET scan?
I do know that two months post treatment Jim will have another PET scan, per his radiation oncologist.

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