hi all, Just got back from my surgeon at James cancer hospital.My neck dissection has healed enough to start radiation and concurrent chemo.He is turning me over to radiology dr.,who I will see tommorrow.Also told me I am at stage 3 based on size of original lypmh node. I already had surmized this.I was suprised to findI still had no primary,none of the 9 biopsied areas were positive for carcinoma! I am so scared about the radiation,am thinking about not having it,but my husband Danny thinks that' crazy talk.Ha,HA! Has anyone had a simaliar experience with an occult primary? How can I know if it's gone if they can't find it now?Lol...i read this site every day!Rosie i pray for Heather every day and so does my church. I hope her progess is continued despite the pain,infections issues. thanks guys in advance, susanlaura1

Susan,
My understanding is that the primary purpose of a neck dissection is to prevent any further spread via the lymphatic system. In addition it allows pathology testing on the removed nodes to establish the extent of spreading.

It is not likely that your cancer started in a node it got there from some where else. The fact that they still do not know where it came from means that radiation will be all the more important.

It also makes me think that you should consider having another specialist look for it.

Even if they are able to find the primary source you will probably be well advised to go through radiation.

I know these things are not pleasant and forgive the fact that I didn't sugar coat my reply. `

Take care

You didn't list the diagnostic procedures that you have been through, nor the types of doctors that have reviewed your case. I would be interested in knowing these things before further comment. Anytime the primary hasn't been found, you are not treating the entire disease, and that in itself makes me uncomfortable. Perhaps another opinion at another facility will disclose what this facility has been unable to locate.

Hi Susan,

Your profile says your cancer was nasopharynx. If that is true, how can it be an unknown primary?

I was diagnosed in 1997 with SCC, unknown primary, with metatsis to one lymph node in my neck. I had a right neck disection, all 16 of my rear teeth removed prior to radiation(dumbest thing I let them do), followed by 36 radiation treamtents, but no chemo. I was a smoker/drinker running scared because I had a very dead friend who had found a swollen lymph node in her neck and was dead 9 months later(hers was a metastasis from breast cancer, but I didn't know that at the time). All I wanted was the thing out and I'd ask questions later.

One of the bad things about an unknown primary is that they have nothing to aim at, so they wind up aiming the radiation at everything from the tops of yours ears to the tops of your boobs, killing all your saliva glands in the process, although I still do have some saliva. Sometimes during radiation, the primary does turn up. Mine didn't. One thing you might consider if the metastasis was definitely to one side, is to have the radiation only to that side. They don't recommend this and it is difficult to do, but I wish I had done it. I do know someone who did this, and he is quite alive and celebrating his 5 year anniversaary.

You also only get to have radiation to an area once as I was loathe to find out when I developed a tiny tumor on my larnyx 4 years later. Since I had already had radiation to that area, I had to have a total laryngectomy.

I am not recommending that you not have the radiation and if it is really nasopharynx, it doesn't sound like an unknown primary. However, if it really is an unknown primary and your willing to play Russian roulette, I'd get a second opinion and also see if they can limit the scope somewhat and protect your saliva glands. Also watch out for those dentists that decide they want pull any tooth that is in the path of the radiation field.

If I had this to do over again, I would have only had the radiation to one side and kept my teeth(I have a second and third opinion from a dentist and periodontis that specialize in cancer patients that say they should never have been pulled). Too bad I didn't get before I let them pull my teeth.

Good luck with whatever you decide.

hi, Thanks for the reply.I have been seen by my own GP an ent she recommened.Neither of them thought cancer as i was in good health and a non smoker(altho a social drinker and construction worker who soldered and welded often)The ENT removed a large node that had presented 2-3 monthes before after antibiotics failed to shrink.I had a ct scan prior to surgery..after surgery he told me it was grown into the muscles and was tricky to get out,but still pobably not cancer.ON my follow-up visit he still said it's fine.Then his nurse brought in path report,at which point he said oops sorry -you have cancer.he didn't want to handle it nor was I sure I wanted him too.He suggested it was nasophyengenal because of the position of affected node.He refered me to the head surgeon in head and neck cancer at the James in columbus.That Dr. recommended surgery ieneck dissection and a 9-point biopsy done at same time.I also had x-ray done on my lungs that showed something not right.So I had a ct scan but they aren't sure what it is,so I will have another scan in 3-months to see if it has changed.Then the surgery 3 weeks ago.The biopsy showed no cancer nor in any of the 60 removed nodes.The cancer is there but they haven't found it,and this dr. said it could be anywhere not just in nasophyngenal area.I am confused and I have appt. with radioligist tommorrow.Brian if it would help you with a reply I could e_mail you names.This surgeon was very brusque with me and Danny.He also told me i didn't need physical therapy on my arm alto i can feel my range of motion diminish daily and i need financially to return to work and i need that arm....suggestions on where to go for second opinion? Very open to suggestion. Thanks again,susanlaura1

Hi Susan,
Sounds to me like you need to move your treatment to a major cancer center. Read Brian's post on the general board.

Why would your Doctor not want to give you a referral for physical therapy? Is he paying for it? It should be covered my insurance.

I strongly recommend getting PT. My first doctor didn't put me in it right away so I didn't start until 6 weeks after neck dissection. By then my arm and back were so screwed up that it took 6 months to get me back in good working order. It will also help with drainage if you have radiation. I still have some lost of range of motion on the right side. On the other, I was immediately into PT after they did the left side and have full range of motion on that side. Some of this may have to do with the way the surgery was done, but I still feel that if I had had PT right away the first time, I could have elimiated a lot of the back pain.

When you go back to work, make certain that there are arms on your chair. Also don't push to go back too soon. I went back after 8 days the first time, no arms on chair, and no PT. just the weight of dragging my arms about pulled my back out of whack. Second time, it was 8 weeks and I had PT. I had absolutely no problems at all.

Hi all, Thank you Eileen for your insight,I don't understand his reluctance and PT is covered by my insurance.I do construction work so it is imperative I retain motion and rebuild stregnth. I also wondered about his comment that this was still curable. Of course surgeons have crappy bedside manners ,but he was very reluctant to share things like staging and long term prognosis.So I felt somewhat munipulated and patronized as in I=surgeon=God you=patient=mere mortal just do as I say.What concerns me is that the James Cancer hopital is on those lists as one of the best no. 17 I think. So (and this guy is head of dept. and director of entire hospital)maybe i am the idiot!If I go elsewhere -where should I go? susanlaura1

Hi Susanlaura1,

I'm sorry this post is not more timely, but I have been having computer problems the last few days. First, thank you so much for your thoughts and prayers for Heather. I will be posting an update on her soon. We think she might be able to come home very soon. Things are definitely looking up.

I am so surprised to hear the attitude of the dr. you saw at The James. We actually had considered taking Heather there because they do have a good reputation as a head and neck cancer center. And if it is the surgeon I think it is, he was very highly recommended to us by another member of this forum.

I'm wondering how your appt. with the RAD dr. went. I hope you felt more confident with him than you did with the ENT. I don't know what other dr. or facility to recommend, but I wouldn't make any treatment decisions until you are comfortable and confident with the dr. you choose.

Rainbows & hugs,
Rosie

Hi Rosie, Yes,I do like him much better and am more comfortable with him.But I will say that the skill of said sugeon was not an issue,because I can see his work and it is good.The radiologiist is much more approchable.He ordered a PET/CT scan and found the cancer.It is now stage IV-base of tongue primary,and there is still cancerous activity in my left nodal area.Out go all the top teeth,but my front bottom are salvagable! I'm feeling a little depressed about this whole thing but.... I am so glad to hear Heather can go home soon,and is improving!I don't want to take up your time but if you could give me a little insight about what kind of surgery might happen now I would really appreciate it. Thanks for your reply,and my prayers are with you and everyone I read from in here...Sue(susanlaura1)

Why are they going to remove ALL of your upper teeth? Do you have particularly bad upper teeth, periodontal disease, lots of filling? Or have you just run into one of these dentists at a hospital that decides to have any tooth that is in the field of radiation removed? Have they flattly refused to do radiation unless you have them removed?

I were you, I'd think this through and if you have any doubts that any, much less ALL, your upper teeth need to be removed, I'd seek a second opinion and not from that hospital. Find a independent dentist that works with cancer patients and get a second opinion. If teeth and roots are in good condition, there should be no need to remove. If they can at least save some, you may be able to get a bridge or some caps for the ones in bad condition. I didn't get a second opinion and allowed them to remove my 16 rear teeth, upper and lower. Turns out when cancer specialist dentist reviewed xrays, he said none of it was necessary. And if you think you will be getting replacement teeth any time soon after radiation, forget it. Your gums are too sore to even wear them so try to save what is saveable. Took me a year and a half and $15000 to get my partials. Meanwhile my face fell apart for lack of teeth.

Just my personal experience.

Eileen