Hi,
I am Don and I am new to these Forums.
I have SCC. Two lymph nodes with SCC were removed from my neck 6/23/08 along with the tonsils (benign). Despite a PET Scan and numerous biopsies, a Primary tumor was not found.

I expect to begin TomoTherapy radiation treatments and Chemotherapy in a week or two.

Due to complications of somewhat diminished renal function the Chemotherapy drug has not yet been selected.

Due to the unknown Primary I am told I will need more areas treated with greater radiation intensity.

I am having difficulty dealing with the PEG - primarily psychological (Borg Implant).

Hi Don:

Welcome to OCF. Sorry that you are here. Feel free to ask questions or to vent. There are so many kind caring people to help you thru this journey.

Im not familiar with a Borg Implant PEG tube, what is that? Are you able to eat at all right now? I have a PEG tube, and hate it more than anything. But I also understand I need it at least for a while til I can eat properly again.

Christine

Don -

I hear you on the PEG tube! I hadn't thought of it as a Borg device, but love that! (Christine, the Borgs were a race of beings in the Star Trek series that 'assimilated' other species and were covered in various implants and devices. They were quite evil.)

My PEG tube site got infected about 5 days after the procedure and was incredibly painful. A course of antibiotics cleared it up, but it was really unpleasant. The site no longer hurts but like you, I just hate that its there. I think I'll appreciate it much more when the time comes that I need it.

I guess my point is, hang in there. In the scheme of this illness, and its treatment, the PEG isn't so bad.

- Margaret

Wow did that one go over my head! I guess you can tell, Im not a big Star Wars fan.

Christine

Star Trek, not Star Wars . . . ;-)

Hi Margaret & Christine
Well it looks like we got past the Borg device
Now if I can just learn to tolerate it before ignoring it ends me up with an infection like Margaret had
Anyway, tomorrow I go to PEG school (aka Borg School) so lets hope I don't flunk out!

I really need help with some of these unpleasantly new acronyms. Like; Tx, Dx, T?N?M? IMRT and I have no idea what stage of cancer I have. The doctors are probably afraid I will even ask

I guess it is time to stop setting meekly in the doctor's chair like a wounded rabbit and start asking some questions.

I was trying to search for other with "Unknown Primary" but not a lot of luck figuring out how to search for compound terms (Unknown Primary = Unknown + Primary??) Instead seemed to get lots of known Primaries and Unknown other thing!

I guess in a few day I will be the "old pro" instead of today's "new guy"

Don

Don:

If you have questions about the PEG just ask. It took me a long time to get adjusted to mine. Finally the third formula I was given I could tolerate. Also there are 3 different feeding methods. Ask if you can get the feeding pump. I use it overnight, its very easy. It runs by itself and is slower than the other methods, so its easier to tolerate.


If you are still able to eat. Do it now, eat everything!!!!! Dont be concerned about gaining weight or calories, just eat. Do try for nutritious foods, not just a few bags of chips.
After you start treatments it could be a long time before food tastes like it should again.


Under FAQ there is a post of abbreviations that you will find helpful. Im not the best with them either. Dx is diagnosis, TX is treatment, IRMT is radiation, and the T?N??? is something with staging. If you have had a PET scan then your doc should be able to tell you the stage. The lower the number, the better.

Keep asking questions on here, you will get lots of help.

Good luck at 'school' tomorrow.


Christine

Don,

Definitely ask questions! Bring a note pad and write down the answers. If you can, bring someone with you and have them write things down too. Two sets of ears are almost always better than one. Also, don't hesitate to call the doctors when new questions come up.

As someone with pet rabbits, and a former rabbit rescuer, I can say without hesitation that wounded rabbits don't always do so well

- Margaret

Don,

I was almost a Unknown Primary (UP since you like initials) but they were able to find my primary at my BOT and I assume they checked there for yours? I have one comment on the statement made by your RO re treating more areas w/ greater intensity and that is most of us receive the maximum amount of rad they think they can give us during our treatment, primary found or not, so you may want to ask what exactly that statement means.

Tell me more about you. Did tobacco play a role on your cancer? Where are you being treated? Age?

I had mets to 2 nodes and I was told that because of that I was automatically a Stage IV.

As others have said eat like there's no tomorrow because before long nothing will taste remotely good and then you may also have swallowing problems. Avoid using the Peg until you absolutely need it. Keep swallowing throughout the entire Tx. Keep hydrated and get the recommended calories EACH AND EVERY DAY. Do not miss a water or food feeding or it will come back to haunt you.

Ask any question you may have. remember there are no dumb questions....

You are very fortunate (other than the cancer of course) to have hooked up with this site as it will prove to be the most valuable non medical "member" of your cancer eliminating team.

Hi Don,

I would like to confirm the advice you have been given by the others. I am 3 1/2 weeks into my treatment and am now at a stage where I am very restricted with what I am able to eat and drink - and only half of my mouth and neck is being radiated. I also have weekly chemo (Cisplatin)which I am told amplifies the effects of radiation. I have to say that my whole mouth and throat has been affected, not just the areas getting direct radiation.

Eat all your favorites while you can. I have not lost too much weight - only a couple of pounds - but that has been through perseverence and sheer hard work. I don't have a PEG or a gastric tube and am determined to get through this without a 'borg' - if I can do that without effecting my overall health.

I too don't know what stage I'm at. I have had two primaries = both determined to be Stage 1 (T1N0M0) - but then a lymph node popped up six months after the second primary, with extracapsular spread. I then had a neck dissection, followed 5 weeks later by treatment. I did ask the question but got a fairly non-commital answer from both my RO (radiation oncologist) and my ENT. I think I'm probably Stage 3 but could be a 4. It doesn't really matter at this point. My focus is to get an outcome like David's!

In 12 month's time I hope to be posting that I am 'Cancer Free' and fit and healthy! That's my goal!

Good luck Don! And don't forget to eat and drink whatever takes your fancy while you can!!

Best Wishes

Sue

Hi Don,
I had an unknown primary back in 1997 with mets to one node in the neck. I was barely a stage III. I had a neck dissection followed by 36 XRT radiation treatments, no chemo. At that time they did not feel that chemo added more than a 5% chance to survival and the side effects were too great to warrant using it. They were also certain that the XRT would get everything. My radiation field ran from the tops of my ears to almost my armpits since there was no primary site to aim at. I struggled through without a peg and without losing more than 5lbs by drinking Ensure Plus. I think I had far less complications than most because I didn't have chemo.

Read the board and ask your doc lots of questions until you feel comfortable with your treatment plan. Keep us posted.

Take care,
Eileen

Hi Eileen
Glad to meet ya
I was wondering if in 1997 when you were diagnosed with an Unknown Primary if back then you also had a PET Scan?

Hi Don,
No, I did not have a PET scan until the new cancer in 2001. I'm not certain that Pet scans existed in 1997. I was at a major CCC, Hospital of the University of Pa or HUP as it is known. However, I don't know if they always have the latest up to date equipment. There are so many good hospitals in Philadelphia I think they sometimes use each others fancy machines rather than installing one in every location.

The doctor took many sample biospies in my mouth when he did the neck dissection and they all came back negative. I have no tonsils. Primary had most likely been at the back of my throat where a bad cigarrete had burned a hole when I lit it 4 months prior to the diagnosis.

Take care,
Eileen

Hi David,

Lets see if I can get some answers to your questions!

Regarding the Unknown Primary.
The oral exam by my ENT didn't show anything unusual.
Then I had a PET Scan that just showed SCC in the two lymph Nodes.
During Surgery they removed the two lymph nodes, my Tonsils and took oral and throat biopsies from all suspect sites, but in my case the ENT said nothing really even look unusual and the biopsies were all negative.
During Surgery another doctor did a throat procedure (scoped my throat?)but again found nothing unusual and those biopsies were all negative.

I am 62 and I am a ex-smoker. I quit some five or so year ago. I smoked about a half pack a day back then and years before closer to a pack a day. I don't known if it caused the SCC or not.

With an Unknown Primary and everything appearing normal, so far none of the doctors seem to be speculating on a cause. One Medical Oncologist also mention HPV. I am not sure if I have been tested yet, but based on her questions and my answers, I don't think I am a good candidate.

I am being treated in metro San Diego. The TomoTherapy machine is at Sharp-Grossmont's David & Donna Long Center for Cancer Treatment in La Mesa California (a suburb of SD) My chemo will also be administered at that Medical Complex. My ENT and one of my two MO's is at Sharp-Memorial Medical Complex in San Diego. Both of these Sharp Medical Complexes are about 10 miles from my home Sharp is one of the major providers here(http://www.sharp.com).

So far the biggest problem for me has been psychologically adapting to the PEG -- of course they just put it in six days ago.

Everyone tells me to eat, eat, eat, but since getting this PEG I get heartburn if eat much at all :<

hi there

i found this information on the cancerbackup web site
hope it helps.Unknown pimary is called an occult primary tumour so you might find more if you search using that.
Unknown primary tumour
This information is about unknown primary tumours (UPTs), which are also sometimes called an occult primary malignancy (OPM). It is only natural to be in a state of shock when you have been diagnosed with cancer. It is all the harder to accept when doctors do not seem to be able to identify where the cancer is. This is a fairly rare situation, but one which can cause a lot of distress
A malignant tumour (cancer) is made up of millions of cancer cells. Some of these cells may break away from the original (primary) tumour, and spread to other parts of the body where they may form new tumours. These new tumours are referred to as metastases, or secondary tumours.

The secondary cancer is usually made up of exactly the same type of cancer cells as the primary cancer. This means, for example, that if someone has primary lung cancer that has spread to form secondary tumours in the bones, these bone secondaries will be made up of lung cancer cells. These are quite different from the abnormal bone cells that would form a primary bone cancer. The treatment used for these secondary bone cancers would be designed to treat lung cancer cells, not bone cancer cells.

Some secondary tumours, however, are made up of cells which cannot be identified under the microscope because they look too abnormal, and so it is not possible to tell what kind of a primary cancer they have come from.

Unknown primary tumours
For most people who have cancer, the primary cancer is easy to identify, as their symptoms will have alerted their doctor to the likely cause, and this will have been confirmed by the tests done at the hospital.

In people with an unknown primary tumour, the tests will have found evidence of a secondary cancer but will not have been able to identify the site of the primary cancer.

Why the doctors may not find the primary tumour

There are a number of possible reasons for why the primary might not have been found:
theprimary tumour may have disappeared spontaneously because your immune system may have destroyed the primary tumour, but not the secondaries.The secondaries may have grown and spread very quickly, while the primary is still too small to be seen on x-rays or scans.The primary tumour may be impossible to see on x-rays or scans because it is hidden by several larger secondaries that have grown close to it.It is thought that sometimes tumours of the lining of the digestive system may have been passed out of the body through the bowel.


Tests and investigations
Your doctor may want to do a number of tests in order to try to identify the primary cancer. Exactly which tests you will be asked to have will depend on the clues the doctor has already picked up � for example, the symptoms you have had, your medical history, and where your secondary cancer is.

Unfortunately, it is not possible to describe here all the possible tests that you may be asked to consider. Your doctor, however, should describe to you the purpose of each test.

Tests will probably include an x-ray and a CT scan, blood tests, urine tests and a biopsy (the removal of a small sample of the secondary tumour for examination in the laboratory).

Although it can sometimes be helpful, there is often no real benefit in finding out where the primary cancer started. Your doctors will carefully choose only those tests they feel are absolutely necessary, rather than put you through lots of investigations and tests that may take time and be very tiring, but not make a difference to your overall care.

Information can help to reduce your frustration. Ask your doctor or the other staff looking after you to explain what the tests you are having involve, why they are being done, and what the results mean. If you don't understand their explanation at first, ask again. You may find it helpful to write down the questions you want to ask

good luck
liz

Hello Don,
This may also help with the acronyms.

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

BaCC = Basil Cell Carcinoma
Biopsy = tissue sample removed for microscopic examination
BOT = Base of tongue
Brachytherapy = Radiation therapy with internal radioactive �seeds�
CAT = Computed Axial Tomography (scan)
CCC = Cancer Care Center
CT = Computed (computer) Tomography (scan)
Dives = treatments in a HBO unit
DX = Diagnosis
ENT = Ear Nose and Throat Doctor and surgeon
FNA = Fine Needle Aspiration � (Needle Biopsy)
HBO(T) = Hyperbaric Oxygen Treatments
HIPAA = Health Insurance Portability and Accountability Act
HN = Head and neck
HNC = Head and Neck Cancer
HPV = Human Papilloma Virus
IMRT = Intensity Modulated Radiation Therapy
Met(s) = Metastasis or cancer spread
MRI = Magnetic Resonance Imaging (scan)
NCCN = National Comprehensive Cancer Network
PCP = Primary Care Physician
PEG = Percutaneous Endoscopic Gastronomy (G tube or tube) Feeding
PET = Positron Emission Tomography (scan)
PT = Physical Therapist
QOL = Quality Of Life
RND = Radical Neck Dissection (sometimes Resection) also Modified
RO = Radiation Oncologist
RT = Radiation Therapy also Radiotherapy (Radio)
RX = Prescription or treatment
SCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell ca
TX = Treatment
Xerostomia = low saliva
XRT = X ray Radiation Therapy

I also doubt HPV was the causative factor since you had a history of tobacco use and even if HPV was a cause you would most likely receive the same Tx but you can always get tested for the presence of the HPV virus in your cancer slides if you want.

Test tomorrow on all the abbreviations so study up!!

Liz - Thanks for the research info on the Unknown Primary. I also found a couple other articles on this.

Gabe - Thanks for the great list of Acronyms

David - I read some posts from you on getting second opinions and I have not, but I think except for the RO I have seen two of each speciality within the Sharp Healthcare system. At this stage the dentists and dietitians seem to be front and center. It seems very comprehensive. Also in my case they plan to use IGRT TomoTherapy which they say is somewhat more precise than standard IMRT. Do you think I am OK just following the Sharp regiment?

Don,

I'm not qualified to answer that question. I just want people to know that different doctors can sometimes achieve the same result using different treatment modalities and it behooves them to make sure they as knowledgeable as possible about their options before they start any treatment. I saw 5 different cancer docs and while I certainly wasn't an expert when I picked Moffitt to treat me, at least I was comfortable that Moffitt and their treatment plan was my best choice.