Just Diagnosed Squamous Cell Carcinoma of Neck with unknown primary
Comments
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Sorry to hear about your loved one....
Of course he is scraed, anxious and emotional....it goes with the territory, and there is not one person here who wouldn't relate. It sounds to me like he got diagnosed in the same way many of us here were...lump on the neck sends us to an ENT, who biopsies it and tells us we have Squamous Cell. That's precisely how it happened with me...treated with anti-biotics first, then referred to the specialist.
At this juncture, it's the hurry up and wait game....the hardest part...I know I wanted the cancer out of me NOW, and had to get a PET scan, more appointments with radiation doc, Oncologist, etc...getting everything set up took 5 weeks...I was a wreck waiting for treatment to get started.
I'm not a Dr. of course, but it seems when a swollen lymph node in the neck is the first signal, it usually staged at a III or a IV. You'll see, tho....there are many MANY people here who are survivors so tell him not to panic at the stage.
p0 -
Agree with Phranniephrannie51 said:Sorry to hear about your loved one....
Of course he is scraed, anxious and emotional....it goes with the territory, and there is not one person here who wouldn't relate. It sounds to me like he got diagnosed in the same way many of us here were...lump on the neck sends us to an ENT, who biopsies it and tells us we have Squamous Cell. That's precisely how it happened with me...treated with anti-biotics first, then referred to the specialist.
At this juncture, it's the hurry up and wait game....the hardest part...I know I wanted the cancer out of me NOW, and had to get a PET scan, more appointments with radiation doc, Oncologist, etc...getting everything set up took 5 weeks...I was a wreck waiting for treatment to get started.
I'm not a Dr. of course, but it seems when a swollen lymph node in the neck is the first signal, it usually staged at a III or a IV. You'll see, tho....there are many MANY people here who are survivors so tell him not to panic at the stage.
p
I am sorry for your friend and the stress he is going thru. While my cancer came about in a different way than your friends did it seemed to take a while to finally get the treatment started, it's hard being a patient patient. I will tell you that my cancer was stage IV BUT both of my oncologists told me that staging in the head and neck is much different than staging in other areas of the body. It's not the same as stage IV somewhere else so I hope that will give you both some comfort. Now that you know that you should know that Phrannie is right, there are SO many success stories on this site. H&N cancer treatments have come a long way and have been very successful. That doesn't mean that we don't get scared and nervous because we all do. Thankfully there are many here who pick us up and help us get on the right track.
Come back here with any more questions or concerns and the wonderful people on here will help you out...I know they've helped me many times.
Billie0 -
get ready
Hi cureitall66,
For me, Stage IVa SCC, HPV+, lower tongue and one lymph node left side of neck (click on CIVILMATT for details).
I felt a lump will shaving, went immediately to the doctor, got past around like a hot potato and was offered surgery, radiation and chemo. I chose all three and I am glad I did. When I saw the ENT, he discovered a spot on my tongue and my neck was obvious. After a fine needle biopsy and lateral neck dissection of the Jugular Vein, the cat was out of the bag. The doctor kept a pretty tight secrete until he was positive (there was a chance it was a cyst). Now at 22 weeks post I am doing well. I sleep very good, I am on no pain medication, I have little saliva, I tire easily and have a (temporary) lack of taste buds. Matter-of-fact, I took out a can of Crisco Shortening today, held it up in front of my parents and brother and told them “this is what many foods taste like to me”. Joe blow and his friends just don’t understand “no taste buds”, but my friends here do.
Anyway, I ramble on, but thanks to treatments I can still ramble on.
Best,
Matt0 -
Hi
I welcome your loved one to the club nobody wants to be a member. Your health care team will pull your loved one through. My only hint: food/liquids were less painful when they were at body temperature (like preparing a bottle for a baby.) Actually my wife had to teach/remind me about checking the temperature on my arm. Everyone is different, but for me anything either cold or hot was more painful. Of course your loved one will get pain medications and maybe the magic mouth wash depending upon his/her particular condition.0 -
I did also
I also had SCC with unknown, that was 16 plus years ago. i was taught then and still believe now that it's not about stage's or about percentages of survivorship. it's about one or the other... survive or not and if you believe you will survive you will. Positive Mental Attitude is huge with winning the war against any cancer.
from what i have seen with self and others close being scared, anxious and emotional is very much the norm.
prayers going out for wisdom for you, your loved one and the doctor's.
john0 -
Thank you all for your
Thank you all for your comments and suggestions. I will share this with him. This coming week will give us more of an idea where we will be at in terms of where the cancer is. I will keep you posted. I sure hope they find that the tongue(where the saw the other spot) is the primary and it has not gotten anywhere else. I have faith that this will turn out well. Does anyone know if the ENT will automatically test for the HPV? I've obviously read so much on the internet and found it in almost every article. He is not a smoker and a light drinker, so those do not seem to fit the risk here.0 -
ENT HPVcureitall66 said:Thank you all for your
Thank you all for your comments and suggestions. I will share this with him. This coming week will give us more of an idea where we will be at in terms of where the cancer is. I will keep you posted. I sure hope they find that the tongue(where the saw the other spot) is the primary and it has not gotten anywhere else. I have faith that this will turn out well. Does anyone know if the ENT will automatically test for the HPV? I've obviously read so much on the internet and found it in almost every article. He is not a smoker and a light drinker, so those do not seem to fit the risk here.
Hi Curitall,
Not all ENTs will automatically test for HPV. I had to ask mine to do so. Tonsillar/Base of Tongue malignancies are the ones most likely to be related to HPV - as these areas in the body are very active in the immune system. Please do ask to have the test done.
I was diagnosed with Stage 4 HPV+ Base of Tongue SCC with mets to multiple lymph nodes on both sides of the neck. I am now 2 years 3 months post treatment and doing great so far. No recurrances, no more mets. Hoping for the best for your loved one and you.
Deb0 -
I was diagnosed with Stage
I was diagnosed with Stage IV HPV+ squamous cell carcinoma after surgery to remove what they thought was a branchial cleft cyst. I had already had an ultrasound, cat scan and needle biopsy before surgery which they said was benign. Two ENTs had agreed so imagine my shock. They have since done a MRI of the head and neck and PET Scan which were both clear. SO I have unknown primary, they tell me there are a lot of times they never find the primary. I had my surgery April 20th and did not start chemo and radiation until June 11th. I completed treatment August 3rd and now in the recovery stage. I believe in the positive attitude gets you thru it better. They tell me at the Oncology and Radiation Center they have never had any one come thru this treatment as well as I did. I read everything I could find before hand so I was prepared for the worse so think I was happy when it wasn't that bad. It is tough but come here often for answers and support and your friend will make it thru. Prayers being sent your way.0 -
Hi Deb,D Lewis said:ENT HPV
Hi Curitall,
Not all ENTs will automatically test for HPV. I had to ask mine to do so. Tonsillar/Base of Tongue malignancies are the ones most likely to be related to HPV - as these areas in the body are very active in the immune system. Please do ask to have the test done.
I was diagnosed with Stage 4 HPV+ Base of Tongue SCC with mets to multiple lymph nodes on both sides of the neck. I am now 2 years 3 months post treatment and doing great so far. No recurrances, no more mets. Hoping for the best for your loved one and you.
Deb
The Tonsillar/Base of Tongue is the suspicious area as thought to be the primary. I can't believe that ENT's wouldn't know to check this automatically as it seems to be in everything I read regarding the neck (with lymph node involved) and then the base of tongue looking suspicious. But we will be sure to ask. My understanding is that if it is HPV related, there is a greater response. Were you told this?
Cureitall660 -
Very similar here...boardwalkgirl said:I was diagnosed with Stage
I was diagnosed with Stage IV HPV+ squamous cell carcinoma after surgery to remove what they thought was a branchial cleft cyst. I had already had an ultrasound, cat scan and needle biopsy before surgery which they said was benign. Two ENTs had agreed so imagine my shock. They have since done a MRI of the head and neck and PET Scan which were both clear. SO I have unknown primary, they tell me there are a lot of times they never find the primary. I had my surgery April 20th and did not start chemo and radiation until June 11th. I completed treatment August 3rd and now in the recovery stage. I believe in the positive attitude gets you thru it better. They tell me at the Oncology and Radiation Center they have never had any one come thru this treatment as well as I did. I read everything I could find before hand so I was prepared for the worse so think I was happy when it wasn't that bad. It is tough but come here often for answers and support and your friend will make it thru. Prayers being sent your way.
Sounds very familiar. Your friend should do very well...the waiting is the worst.
I too was diagnosed with an unknown primary in January 2010. BTW; I'm a white male, 49 yrs old at time of diagnosis. Do not smoke or drink at all.
I had a swollen lymph node that was a concern after not responding to two rounds of antibiotics.
My ENT then ordered fine needle biopsies etc. The pathologist knew it was cancerous, but was not able to determine type, so my ENT surgically removed the lymph node and sent off slides to Mayo Clinic. Mayo identified it as SCC. I was then refered to M.D. Anderson Cancer Center in Houston. (fortunately, I live 30 miles north of Houston).
After Right & Left tonsil biopsies and base of tongue biopsies under anesthesia-no primary was found, M.D. Anderson staged me HPV+ T0 N2b M0.
I was given the option of adding chemo to the standard protocol radiation treatments as the lymph node had extracapsular growth. I opted for chemo...to throw "the kitchen sink" at the cancer and destroy it!
Since there was an unknown primary, I was radiated across the pharyngeal axis.
Treatments were: Radiation Mon-Fri for seven weeks (35 treatments) and Cisplatin-seven infusions... every Monday for seven weeks.
I did not have a feeding tube, but it was tough toward the end. I started at 210 lbs, finished at 175 lbs. Pain is rough...stay ahead of it with meds. Keep up as best you can with calorie consumption. I survived on Ensure and Boost for several weeks...it can be done!
I Completed treatments 4/30/2010, I was back at work part-time in June, full time in July.
My doctors gave me a great deal of possitive feedback and a very good prognosis.
I was very positive through this tough experience, my wife was unbelievable...so were neighbors, friends, co-workers and church members.
I have come through this extremely well and feel very lucky / blessed to have done so.
Today...I'm at 200 lbs. Working out a few times a week. Energy is super. Salivary function is at about 70% of "normal".
All the best to your friend!0 -
Surgery Biopsy done today....
ENT found only one suspicious area to biopsy....the base of the tongue, as he thought could be primary. Results hopefully Wednesday. He said he looked everywhere within the area and saw nothing else to biopsy. Hope this is even more good news. I'm wondering if this path report will indicate the possible cause/strain (if HPV)? I'm hearing some say to ask the ENT and some say the path found it.0 -
Yes I was told that.cureitall66 said:Hi Deb,
The Tonsillar/Base of Tongue is the suspicious area as thought to be the primary. I can't believe that ENT's wouldn't know to check this automatically as it seems to be in everything I read regarding the neck (with lymph node involved) and then the base of tongue looking suspicious. But we will be sure to ask. My understanding is that if it is HPV related, there is a greater response. Were you told this?
Cureitall66
I took my case to Stanford Cancer Center for a second opinion, and the first question they asked was if I'd been tested for HPV. I said yes, and it was positive. They said "congratulations". HPV+ SCC responds more completely to chemo/radiation, and is less likely to recur, according to recent studies. Stanford is doing a study to compare whether a reduced/less intense treatment will bring about as complete a cure. This is in the hopes that they can minimize the long-term side effects and deficits that result from the full course of treatment. Even now, knowing what effects I have, I would NOT opt for a reduced treatment. I don't want this thing to recur.
Deb0 -
Nocureitall66 said:Surgery Biopsy done today....
ENT found only one suspicious area to biopsy....the base of the tongue, as he thought could be primary. Results hopefully Wednesday. He said he looked everywhere within the area and saw nothing else to biopsy. Hope this is even more good news. I'm wondering if this path report will indicate the possible cause/strain (if HPV)? I'm hearing some say to ask the ENT and some say the path found it.
It is a separate test to determine HPV status. In my case, they tested for HPV genetic materials within the tumor cells, so my samples had to be sent off to a special lab. I'm not sure if there are other tests to determine HPV status. There is a result for "P-16" that is supposed to strongly correlate with HPV Status, i.e. if P-16 is positive, you are very likely to also be HPV-16/18 positive. These are the two strains of HPV most likely to cause cancer.
Deb0 -
Great in-put
I hope you feel better after having all the wonderful in-put from this wonderful site. I was also treated for scc, stage iv, in July-November of 1991. Just imagine what the medical world knows nearly 21 years later! I pray for and wish you and your friend the best of all possible results. Josh r.0 -
Great in-put
I hope you feel better after having all the wonderful in-put from this wonderful site. I was also treated for scc, stage iv, in July-November of 1991. Just imagine what the medical world knows nearly 21 years later! I pray for and wish you and your friend the best of all possible results. Josh r.0 -
Pathology report to come tomorrow after the tongue biopsy
Tomorrow we will get the Path report after the tongue biopsy. I don't know if this will tell us the primary site for certain as the ENT has thought or what. Having faith that it is all within the neck and base of tongue and nowhere else. I was thinking they would do a PET scan, but ENT said probably not. Wondering why this is? Wouldn't we want to know if the cancer has traveled? Or will this last biopsy tell us this? The ENT felt it was all caught early so we're hoping it is a low stage. Is this cancer known to spread anywhere else quickly?
Thank you all for your kind words of encouragement. I've been sharing this with him. He can't even get himself to really want to write or read about any of it at this point.....so I'm just trying to pass things along the best I can.0 -
Just got our pathology report todaycureitall66 said:Pathology report to come tomorrow after the tongue biopsy
Tomorrow we will get the Path report after the tongue biopsy. I don't know if this will tell us the primary site for certain as the ENT has thought or what. Having faith that it is all within the neck and base of tongue and nowhere else. I was thinking they would do a PET scan, but ENT said probably not. Wondering why this is? Wouldn't we want to know if the cancer has traveled? Or will this last biopsy tell us this? The ENT felt it was all caught early so we're hoping it is a low stage. Is this cancer known to spread anywhere else quickly?
Thank you all for your kind words of encouragement. I've been sharing this with him. He can't even get himself to really want to write or read about any of it at this point.....so I'm just trying to pass things along the best I can.
Well it seems like we are about the same place in the process. My husband just received his pathology report on the biopsies they did last week. They found a mass on the base of his tongue, but we have a while longer to find out if he is hpv positive. I look forward to getting to know you.0 -
You're not alone....VivianLee5689 said:Just got our pathology report today
Well it seems like we are about the same place in the process. My husband just received his pathology report on the biopsies they did last week. They found a mass on the base of his tongue, but we have a while longer to find out if he is hpv positive. I look forward to getting to know you.
VivianLee5689,
You are certainly not alone. As caregivers, we are just as anxious for answers as our loved ones. I look forward to sharing our experiences together...as it sounds like they are so similar. Hang in there...0 -
Second path of base of tongue...
As we thought, the biopsy shows the base of the tongue to also be cancer. The ENT is assuming this is the primary site, but could not say for certain. He also mentioned the possibility of HPV. Wondering how long and at what point they will test this. Seems like it is an important factor to consider before starting treatment. According to what I've read on line, that if it is HPV involved, that the response to treatment seems to be better. Anyone told that? Next step is to go to U of M and get another opinion and probably stick with them for treatment. We are hoping they can get him in within a week. The ENT has already started the process. So now we're just waiting again. This is getting difficult in keeping him at ease and to decrease the anxiety. He (loved one) is worried it has or will travel somewhere else if it's not addressed quickly. He's also concerned if the tongue is the primary...0 -
Still waiting on our hpv results toocureitall66 said:Second path of base of tongue...
As we thought, the biopsy shows the base of the tongue to also be cancer. The ENT is assuming this is the primary site, but could not say for certain. He also mentioned the possibility of HPV. Wondering how long and at what point they will test this. Seems like it is an important factor to consider before starting treatment. According to what I've read on line, that if it is HPV involved, that the response to treatment seems to be better. Anyone told that? Next step is to go to U of M and get another opinion and probably stick with them for treatment. We are hoping they can get him in within a week. The ENT has already started the process. So now we're just waiting again. This is getting difficult in keeping him at ease and to decrease the anxiety. He (loved one) is worried it has or will travel somewhere else if it's not addressed quickly. He's also concerned if the tongue is the primary...
We were told being hpv positive was a good thing. They starte testing the biopsied mass for the presence of hpv last Tuesday. As of yesterday the results were still not in. I am anxiously awaiting our results as well. We were told that based on having cancer at the base of the tongue and the lymph nodes involved that they believed they had found the primary.0
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