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Unknown primary site

chantil
Posts: 13
Joined: May 2010

My husband was diagnosed stage 4 HNSCC. Left neck disection Surgery on April 30 , 2010 removed 22 lymph nodes 3 were positive. Unknown primary but the doctors are recommending full radiation 60 grays on right side and 70 grays on left side, 5 days a week for 6 weeks. Also, recommended Cisplatin 3 times OR Erbitux weekly. My husband is contemplating no further treatment unless a primary is identified. Would that be a mistake? Also, any thoughts on Erbitux vs. Cisplatin?

Fire34
Posts: 350
Joined: Feb 2010

Chantil
I was also unknown primary and had 8 weeks of chemo and then 5 alternating weeks of twice daily concurrent chemo/radiation. I was also radiated on both sides of my neck as a precaution to the unknown primary. I was also HPV+. I was on Erbitux weekly with carboplatin & taxol during weekly chemo and then 5FU & hydroxyurea during radiation.
Erbitux was fine for me I got the acne really bad and had a topical cream to use to keep it from flaring up to bad, still have some spots that you can tell where the acne was. they say if the rash develops it is working. I was part of a Erbitux clinical study. at U of Chicago. I have no experience with cisplatin there are many others on this site that have though.
I would suggest a port-a-cath for easier access as my veins dried up after the third chemo week, and a PEG tube for nutrition.
I am 6 months out today and scans are still clear
Best Wishes & Prayers on whatever your decision will be
Dave

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I am 39 years old diagnosed SCC unknown primary. Had surgery last month, 42 lymph nodes removed with 1 testing positive with no extracapsular spread. The Doctor suspected the primary would be found in the tonsils but those were clean.
I am not receiving further treatment per their recommendation. The doctor believes that my body may have fought the primary off and they don't want to do radiation in the whole area unneccesarily. They said if they find cancer during an upcoming exam or scan they will proceed with treatment as needed.
I still have uncertainty about how I am proceeding but every case is different and I trust my team.
Not sure how old your husband is but that may be a factor. Having three nodes test positive instead if one may be a factor as well. Whatever is decided I wish you guys the best and know that there is power in prayer.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

My Dx was the same as your husband. I too was reluctant for more intervention. The data says prognsis goes up if you do the full monty (rads and chemo) than if you don't. The number srae fuzzy, but my Dr told me my chances for disease feree long term survival withno recurrance was only 20% with surgery only. With thew other treatments it went up to 80%.

I let my wife and kids make the decision and they said we would do it. The brutal treatment ended 8 weeks ago and I'm still recovering. The Drs say they think it's gone. We'll see.

Best of luck with your decision.

Mick

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

It's my understanding that the Unknown Primary is a major cause for the need to have both Chemo and Rad. I have/had the Unknown with my 12/08 C diagnosis, had both C&R, and am doing relatively okay. Thing is- my ENT told me the Unknown Primary would be cause for concern going forward, after treatment. And, getting both C&R is the standard for Head and Neck, according to my Drs., though that does depend on how early they catch it. However, the Unknown seems to me a definite calling to have both C&R- the chances of beating the C are excellent.

Please keep us informed.

kcass

chantil
Posts: 13
Joined: May 2010

My husband is concerned that if future scans show a primary then radiation would not be an option if we go ahead with RT now, the PET scan results confirmed today - totally clear, no primary site. RT would not be repeated and surgery would not be repeated on the neck if cancer did show up there. Sorry for rambling on but there's a lot of info to process and then there is gut feeling too.

Thank you for all the replies. Please keep us in yours prayers as you will be in ours.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Remember that the PET cannot 'see' below a few millimeters, so if the primary is really small (even microscopic), the PET is not going to show. It's a roll of the dice. Ask your Dr about this.

Best,

Mick

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Chantil, Sorry to hear of the situation and the confusion. There may never be a 'best answer', just a 'preferred' route through this. Most people have RT, Chemo and Surgery as their main line of defense. Personally I don't think we should rely 100% on these treatments as a permanent solution.

I hope you also consider looking closely at diet and nutrition as well - as another line of defense to Cancer. Studies have shown diet has a large impact on our health. Getting onto a healthy diet consisting of Raw foods, whole food and all plant based is shown to be of great benefit. It would be worth your while exploring this as part of you and your husbands 'new life'. You can PM me or read my Expressions page for more information.

While it is often difficult to know exactly what caused your husbands cancer, it is obviously related to something he was doing till now. By identifying the bad things he may have been doing : Smoking, drinking, poor diet, overweight etc you have the choice to eliminate the bad things and introduce new and better ways to live which will contribute to a recovery and future life without cancer.

All the best in finding your way. It can be beaten.
Scambuster.

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

First Welcome to CSN. I suggest Fight it with everything you can, don’t give-up because they can’t find the primary. Do what you need to do to stay alive; there is plenty of good life left over even after Cancer

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

My husband has the same diagnosis. No primary found after CT Scan, Pet Scan and Panendoscopy.

Right neck dissection on 4/26/10. Two positive nodes with no extracapsulary extension. He'll start radiation and chemo on 6/7/10.

Tumor Board recommended the full treatment and we agree. Want to do everything we can for a cure and looking forward to NED going forward.

chantil
Posts: 13
Joined: May 2010

what is NED?

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I too had an unknown primary. I had a modified radical neck dissection, took my salivary gland and 23 lymphnodes, 3 were cancerous. I also have an added problem in that I have Fanconis Anemia and we are very hypersensitive to radiation and chemo. In fact chemo is not reccomended as it will more than likely kill me.

I had radiation. They also wanted me to do Erbitux, but I refused. I also sought out 3 opinions. I understand we all need to decide our own treatment plans I respect that. I will say that in my research I did read many studies that if the primary does show up then the chances of survival decrease. I wish I had all my original links but I lost them when my computer crashed.

The hemotologist onc that wanted to do the Erbitux (or cisplatin) told me that for me radiation reduces chance of recurrence to 40%. Radiation takes the 40% to 20%, and adding the Eribitux or other reduced it to 10%. I am not sure if these statistics really apply to me since I am a Fanconi Anemia patient and we have an extremely high risk in growing tumors.

If I was 100% healthy I probably would have gone at it with both guns. You want to try to prevent that primary from rearing it's ugly head.

chantil
Posts: 13
Joined: May 2010

We have decided to use the radiation therapy, but now we need to decide by tomorrow whether or not to use Erbitux. Anyone have any experience with it? what about having to stay out of sunlight during and after treatment? We are aware of the 2% heart attack during injection, and the acne rash any other complications? Thank you for all the responses.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

.. generally has less side effects than other forms of Chemo. I had it. The only effect I had was the bad acne like rash from about end of week 2 or 3 for a couple of weeks. It was all over my face, ears. Annoying and uncomfortable, but bearable. I used a topical antibiotic. Use only neutral hair and face washes (Sorbolene / Actil ).

I am very fair so was worried about the photosensitivity too. This is really only the case for the time you are in treatment and the perhaps a month or so post treatment, then things return to normal. Certainly you should remain sensible in the sun and wear a hat anyway.

The infusions took about 60 -90 minutes, once a week with a double shot (The Load dose) at the beginning - usually 1 week before you start rads. Total Load plus 7 doses total.

As for the effectiveness, I wish I could say. The statistics given - 20% etc are relative percentages and of no real value when you find out how they derive these figures. Absolute %ages are more likely the truth and a much smaller number than what the Chemo guys throw around. I wish I could say I was convinced it helps, but I really don't know and to be honest I would still hate to have decide again as I don't know what I would do. Whatever you decide, run with it, believe it and also focus on rebuilding the immune system and eating a proper diet. Hit it every which way.

Scam

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