Positive SCC biopsy unknown primary looking for reassurance

hi, Jenni.  I'm sorry you are so worried and i understand your question.  a very good question but i have no answers.  i just want to say welcome and I will be praying for you.

God bless you,

dj

Hi GCgal,

Same here... SCC Tx N2b MO Stage IV HPV+. Two tonsillectomies (palatine and lingual), multiple biopsies and nada... Never found the primary site. They believe mine started back of tongue. Selective neck dissection to remove the cancer from my neck, 6 weeks rads and weekly chemo (cisplatin). Friday will be two years cancer free! 

I'm not gonna sugar coat it, treatment was brutal! There were times I wasn't even sure I'd get through but I did. Recovery is measured in weeks and months. I still have side effects but with physical therapy and most recently acupuncture. I'm doing better and adjusting to the "new normal". 

Being in the 1-2% of H&N cancers is foreboding but with a good team behind you, you'll make it! Life is 10% what happens to us and 90% how we handle it. Attitude is the key and keeping a positive one will be your key. You can do this! Go kick some beast!

Positive thoughts and prayers.

"T"

Welcome to the H&N group and sorry you need to be here. Mine was different as they saw my tumor and showed me a photo. It was lying on my vocal cord and the size of a large grape 3cm x 2.5cm. They did a neck dissection on both sides and took 86 glands as a precaution. I was T4;N2;M0 before surgery and T3;N0;M0 after the surgery, SCC of the larynx. I never had to have chemo or radiation as they got all of mine with the surgery. It is very beatable and the success rate it very high. Not knowing or if they do know the primary, you will most likely have chemo and radiation which is the most common treatment. It is a bumpy road you will be going down, but as so many here have been down that road you too well be fine and make it as well. You just take one day at a time, and on really bad days just hour by hour if needed. Please take someone with you to your doctor appointments as the doctor will say something that might throw you some and it is better to have someone with you. You will have questions so write them down on paper and hand it to the doctor and you will get them answered that way. You have found the best support group there is, and we're open 24/7. I'll add you to my prayer list but you can get through this. Everyone will help.

Bill

forum, GC....I found this place before I started treatment 3 years ago, and what a great place it is to get information, vent fears, and to lock arms with people going through the same thing...or close to the same thing.

There are others here where no primary was found.....T is one, but there are a few others.  I can see how it would be disappointing not finding a primary tumor, but on the other hand, they looked and looked....and these Drs. know where do to that looking....it's not like it's lurking under a rock in a vast field of rocks to look under.  I've hears of the body curing the primary, but not before it got into the lymph nodes.  You body might have already licked the primary tumor. 

Don't jump into a vitamin regime without talking to your Drs.  My Drs. made me quit all vitamins until after treatment....the reasoning is that "yes, they help healthy cells be heathy, but they also help cancerous cells retain their health".....just run everything by your Drs. before doing anything.

Stick close to this board.....the people here are smart and wonderfully supportive.....

p

GCgal said:

Thank you! ...yes Waltzing Matilda!

Thanks for your warm welcome and overall response it was very helpful. Im shitting myself about what lies ahead..... I am sheduled to have 3 lymph nodes removed on the 5th May, I arent sure why they went on search for the primary and left the diseased nodes. I have not been informed of the stage, when I met with the ENT doctor yesterday she told me that she doesn't work with the staging system and made reference to the coding system that she uses but to be honest I didnt take it in and couldnt tell you what exactly it was. Apparently I had a heap of biopsies whilst under for the tonsilectomy, they all returned a  negative result too. At the risk of sounding stupid I dont know what you mean by necotic lymph, the lymph node that wa originally inflammed and caused me to present to my GP returned to normal after the biposy. What do you mean by vitamin guru?? I am planning to commence a regime of doterra oils as a friend of mine (who had terminal liver cancer and is now deceased) swore by them, she always looked amazing and lost no hair during her treatment which she accounted to taking alternative medicine - doterra essential oils. Have you heard of this?? 

Jenni, all I can say is my opinion. This forum seems more alopathic in their medicinal beliefs, and I don't really choose to argue. But I will tell you what I did. Somebody else can also chime in if they wish but my ENT told me, that tumors don't shrink or that is what I understood him to say about my necrotic lymph nodes. That is the term he gave me to inidicate that in the center of my lymph, it no longer got oxygen or blood or something and indicated it was "dead". OK, I will look it up? http://www.diffen.com/difference/Apoptosis_vs_Necrosis Briefly, necrosis or necrotic is "cell death". There is a vast resource of info here at CSN as well.

My understanding and again I AM NO DOCTOR, the thinking goes, there is a tumor and cancer is defined as uncontrolled cell growth. As the expired cancer cells die off they are captured in the lymph system? When the lymph systen is overwhelmed they go necrotic and swell? Again ??? I am no expert, but each of us has to take personal responsibility for our health, notice my chicken disclaimer.

My "guru" as I called him is like a medicine man or shaman, alopathic Dr's who go to school forever will tell you not to believe them and indeed the vast majority of them are snake oil salesman or charlatan's. One thing my guru helped me with was calming down when I was freshly diagnosed and the anxiety was nearly enough to cause me a coronary. He gave me the best advice I think to date and that was what I already said. This disease is deadly, but it is almost always slow. He encouraged me to get a second opinion, which I did. I don't recall if you have done so, but I cannot stress strongly enough that I hope you too get a competent second opinion. That is not to say that you haven't already received the absolute best advice that exists, but back to my statement about being responsible for your own health care. It can be daunting and terrifying as I think many here will concur. But, especially so far with what you have shared with us, the procedure just seem odd to me. 

Yes I too have taken doeterra. I know no one here wants to give you bad advice, me included and I have read so many "cures" that people want to sell us on the internet which we don't know the quality of nor the efficacy. That being said, chemotherapy has advanced. The chemo that was given to my father in the 80's killed him, I think it was little more than rat poison. I believe the theory at the time was loosely, to try and poison everything which knocks down the immune system so far and hoping the good cells come back faster than the cancer cells. He died with chemical pneumonia from the chemo. Also he was a lifetime smoker as was I. My diagnosis finally gave me the impetus I needed to quit, I am now 16 months cigarette free. That's another story.

I firmly believe it is vital to be as healthy as we can be because I think sometime after all the treatment it will come down to our bodies being able to fight and disease. Some nurse told me that the PET scan I had would only "see" tumors as small as 2 millimeters, which is large enough to contain a billion cancer cells and the reason they wanted to give me radiation [which I refused] was to get any loose or random cancer cells that my surgery missed. I went a naturo pathic way after my surgery and so far so good. What so far has worked for me is not for everyone and my ENT after several scopings says "I am an anomaly", he expects to see a tumor I guess or just wants me to feel better, I don't know. But that is the route I took and I know it isn't for everybody. I am however glad that I didn't do the rads. Sorry if that offends anyone.

I also think that processed sugar is poison and cancer food, and yes I love ice cream [and now eat it] but that doesn't change what I think. I don't know your age, weight or health which I think are all factors. Our mental state is very important as well.

One of the worst parts is how this gets into our heads, some take medicine to combat the stress. That is the insidious part of this disease, I hate waking up at 3am and the thoughts sneak into my head and I can't fall back asleep. The disease is just that, a disease. Like I said before this is winnable and H&N as a huge success rate. Jenni, you can beat this. I don't have the time or inclination to lie to you, but it is hard. Get another opinion.  I guess I can't post clickable links???

GCgal said:

Thanks for the welcome and prayers Bill

Im sure the surgery you had wasn't pleasant but you sure were lucky to have not had to travel the chemo and radiation road, thats the part that Im fearing the most. Do you think that you could possibilty read my responses above and provide further answers to any of questions Ive asked. Im trying to learn as much as I can from people who have been there themselves. Again thanks for your response 

I will answer all I can, but please understand I will answer but I don't sugar coat them. I will just tell you how it is.

Yes the surgery was something. I was cut from ear to ear and my total larynx [voice box] was removed because my lungs were to bad to survive radiation or a surgery to save my larynx. They gave me a stoma [that is a perminate trach] so I breath through my neck for life. The left side will always be numb, but Mine was what they called a classic surgery 8 hours in and out. I am doing great and have a prosthesis so I can still talk. I got a second chance on life, and you need to look at it the same way. [If you click on my name on the side it will take you to my page and in expresions I have photos]

Now as far as not finding the primary site there have been many. "T" answered you and they never found his. There has been many. I bounced from stage 4 to stage 3 and stayed on stage 3.

As far as radiation for me, they want to save it for my lungs later. Having chemo and radiation there is a very good survival rate. However everyone reacts different. Some work while having it and others have a very hard time and lose lots of weight. I would recomend to put on a few pounds if you can. Stay hydrated and drink lots of water. This is done for two reasons. One is to stay hydrated and the other is to keep swallowing, you can forget how to and it will be harder on you if you don't keep swallowing. Many have to have a feeding tube called a PEG. Some do and some don't. The only thing we all have in common is, we're all are scared, and we all have or had cancer. Oh, and one other thing, we all have become like family, and understand what you are feeling and going through.

As far as taking supplements, I don't know if they will cure, but some do or can help,[ your friend took them but did not make it]. IF you want to take them, only do so after you tell your doctors, all doctors as some might effect chemo and radiation. You must tell them everything you are taking even if it is only a vitamin. What you are about to go through will take all your strength and get an attitude you will kick it all over the place and beat it to the ground. That is a big part of beating this, and you can do it. Others that had chemo and or radiation will chime in and help you as well. What you are going through is normal for this. You can even get some depression, which most have at one time or an other and that is normal. You tell your doctor how you are feeling and they will help the same way as they want you NOT to be in pain. The plan is to have you beat this with the least effect on you. Now the doctors can only do so much and the rest is up to you and just how hard you fight. I can whistle and blowup a balloon which I was told can not be done by someone who had a laryngectomy, but I can, it took two months every day and almost all day as well to be able to whistle, but I can. So can you, and don't forget to cellabrate all your small accomplishments as they are really big ones.

I hope this helps some, you are never alone in this.

Bill

GCgal said:

Thanks for your response

WOW again, thanks for your response.... stage IV thats real serious, is that why you had so much treatment? how do they come to the conclusion with grade you are without locating a primary? Is it rare to find no primary??.... BC there doesnt seem to be many people with similar circumstances. Have you heard that the body can heal itself and there may not be a primary?? Did your lymph node go back down before they removed it?? Sorry for all the questions

I had my initial diagnosis locally in VA. The first surgery to remove the palatine tonsils locally as well. Many biopsies were done at that time without a positive ID on the primary. I sought a 2nd opinion at Johns Hopkins and decided to get treatment there. My team at JH concluded that surgery to remove the tumors would be the best option. They went in and took my ligual tonsils looking for the primary and upon opening my neck, found that the tumors had aggressively spread throughout the muscles nerves and arteries in my neck. A two hour surgery went for close to six hours. The tumors were extracapsular. Due to the extent of the spread in my neck, they ruled it Stage IV. The nodes tested positive for HPV which is favorable concerning treatment. They also did many more biopsies searching for the primary... no luck. They believe the initial infection was back of tongue and centered my treatment based on that. I was told that my body most likely eradicated the initial infection on its own but not before it spread it's joy to my lymph nodes. Unknown primary in H&N cases are 1-2% of all H&N cases. Rare indeed. 

As far as the node? No... I initially felt the gland in August of 2012. It had grown to around 3cm by November 2012 when I was diagnosed. By the time I went in for surgery in Feb of 2013, it looked like I had the mumps on the left side of my neck. They removed two 5cm+ tumors from my neck along with 23 additional nodes. 

I healed for a month and started 6 weeks of chemo/rads March 13th 2013. Tomorrow is the two year anniversary of finishing treatment. 

Positive thoughts and prayers