Newly diagnosed
My husband was diagnosed on August 11th with Metastatic Squmaous Cell Carcinoma of neck with unknown primary. He does not smoke or drink or use any tobacco products so I think it may be HPV, although we haven't got that far yet. He is suppose to have a scope to take multiple biopsies in hopes of finding the primary and then a neck disectiion with chemoradiation. My question today is how long can you wait to start treatment. He noticed the enlarged node the first of May. The surgery scheduler from the ENT's office called the first of last week and said she was going on vacation for ten days and would call us when she returned to schedule the diagnostic scope. The way it looks it will probably be another month or longer before he can have the neck dissection. I am a Registered Nurse and in fact spent fifteen years in oncology prior to moving to cardiac. I am knowledgeable of most cancers, as well as chemotherapy drugs, but I only remember one case of head and neck cancer. I know that patents usually become the experts in there condition, so I would value any advice or input someone can give me. I worry about the malignant cells becoming extracapsular and starting to spread. It seems that the health care workers see no immediacy. I asked if someone else could schedule it and she said no. Any advice?
Comments
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Hi Cocogirl...
Sorry you had to find us.....but SO glad you did! This is the best forum on the internet...lots of knowledge and support here....and a very positive place to ask questions.
I don't see why they won't schedule an appointment for the scope/biopsy, even if she is going on vacation.....she's coming back, so why not have an appointment lined up and ready for her return?
There is always a big delay in getting treatment.....I found my enlarged node the first of Dec. 2011....finally went to the Dr. the first week of January.....did antibiotics for nearly a month, then referred to an ENT which took another 3 weeks.....finally diagnosed March 5th, 2012......and treatment didn't start until the last of April, 2012. It's a lot of hurry up and wait. SCC is a slow growing cancer, we can be thankful for that! None of the waiting affected my outcome......still clean and clear at 2 years out.
If you still feel uncomfortable.....is there another ENT in your area that you can check out?
p
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Welcome
This is a great group for support. You might want to read the Superthread at the top of topics, tons of information to get you on the road. Is the ENT a cancer specialist? Are you going to a Comprehensive Cancer Center? I am also a non smoker, drinker, HPV negative. You are in for a fight but to be a nurse is a wonderful caregiver. Many people have to wait for treatment, go through rounds of antibiotics first before cancer is confirmed. Mine was fast and furious so I didn't have the hurry up and wait.
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so sorry you need to be here
so sorry you need to be here but welcome. praying they find the primary and that the surgery and tx go well. it takes time to get started but once started it will go by quickly. the road is rough but he will make it. the folks here have lots of tips and suggestions to help him through the rough points. we will all be here when he/you needs us.
God bless you,
dj
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Very similar
Hi Cocogirl,
I am new to this forum myself. Your husband and I sound like we are on the exact same path. I would love to compare notes with our progress. I found a lump on my neck 5/15 and was diagnosed with MSCC on 8/13. Fortunately at the time of my surgery they biopsied my tonsil. It came back as the primary source. I will tell you that finding the primary source is only the beginning of the hurry up and wait game. I want it gone as quickly as possible but it is a long road I'm told. I now have to have a PET scan Monday to make sure it didn't make it any further down into my lungs, etc. If not, then I too will have a modified radical neck dissection (consultation with ENT on Wednesday), after that I'll have both radiation and chemo.
So the schedulers position is going to be empty for 10 days? I'd ask to speak to her boss. Unless she runs the entire office which I doubt. My husband had to make a few loud demands for me along the way and it worked.
My advice is to have a strong trusting relationship with your primary care physician because he or she will coordinate all care going forward and can expedite things for you.
You mentioned chemotherapy for your husband. You don't predict any radiation?
Shell
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welcome
Cocogirl,
Welcome to the H&N forum, sorry you find yourself here.
I started my story on 11/11/11, when I felt a lump on my neck and finished treatments on 3/23/12, with my last rad. Things will spool-up for you soon. I doubt that a few weeks or months added on will make much difference. Especially, if it is hpv based (slow grower).
Hang on and get smart fast, information is everything. As important is a team which is smart and that you trust.
Matt
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Cancer
My husband's SCC cancer was found in July of 2010. His was cancer of the laryx and once it was diagnosed radiation and chemo started both within one month.
My best advice would be to find a head and neck specialist who has handled your type of cancer and is very knowledgeable about it. My husband's cancer was found by a very experienced ENT. Hindsight was that we should have asked for a referral to a head and neck specialist. After chemo and radiation we were told he was clear, definitely not true. Until breathing problems came up, we thought he was clear. After an emergency trach and another biopsy we were told the cancer was back. We were then referred to a head and neck specialist. He told us that the cancer never went away and was still there but thankfully hadn't spread. He then had surgery and did great for someone his age. Bad thing was that one year later he was diagnosed with a second primary at the cervical of his esophagus and then spread to his lung. Apparently SCC got into his blood and traveled.
So my advice is to get to a head and neck specialist or an ENT that has much experienced in the field of your type of cancer. We were lucky because our ENT told us he didn't have the experience and referred us to a great head and neck specialist. One thing I have found out on this horrible journey is that you have to speak up and speak up loud to doctors and their nursing staff.
Wishing you the best -- Sharon
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Occult PrimaryLadylacy said:Cancer
My husband's SCC cancer was found in July of 2010. His was cancer of the laryx and once it was diagnosed radiation and chemo started both within one month.
My best advice would be to find a head and neck specialist who has handled your type of cancer and is very knowledgeable about it. My husband's cancer was found by a very experienced ENT. Hindsight was that we should have asked for a referral to a head and neck specialist. After chemo and radiation we were told he was clear, definitely not true. Until breathing problems came up, we thought he was clear. After an emergency trach and another biopsy we were told the cancer was back. We were then referred to a head and neck specialist. He told us that the cancer never went away and was still there but thankfully hadn't spread. He then had surgery and did great for someone his age. Bad thing was that one year later he was diagnosed with a second primary at the cervical of his esophagus and then spread to his lung. Apparently SCC got into his blood and traveled.
So my advice is to get to a head and neck specialist or an ENT that has much experienced in the field of your type of cancer. We were lucky because our ENT told us he didn't have the experience and referred us to a great head and neck specialist. One thing I have found out on this horrible journey is that you have to speak up and speak up loud to doctors and their nursing staff.
Wishing you the best -- Sharon
I was in same position. They found it in my tonsil whilst I was under. Tonsillectomy, modified dissection and chemoradiation. Tough going but doable and you will get great advice here - I did. Get hubby to beef up now. Hydrate and medicate in treatment. I found excercise useful. Some useful treatment blogs on word press Theo Radioactive Man and Gammaraygary (not me) which offer a good practical guide. Good Luck and ask away, G
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Welcome to the H&N Group
Welcome to the H&N group, and sorry you need to be here. It is a great group that understands and have been through, or going through it now. Like the others; check the Superthread (Read Only) at the top.
Here it a list of National Ranked hospitals. I recomend to go to the best you can with considering location and needs. One that has a tumor board is better to see. You see all the doctors at one time and they all get together to deside what is best for your case. http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat
Acid reflux can cause it as well, as it just is. Being a nurse will help, but it will also be harder on you because it is your loved one and you will feel his pain sometimes more than he dose. It is hard on the care giver and all the attention goes to the patient, so remember to take of yourself as well. When you go to see the doctor with questions write them down and hand them to him. He will say something that throws you off and then you forget what you wanted to ask. My Dr wrote the answers on the paper and handed it back. A tape recording is good too. All smart phones have them. Remember to stop taking meds that can thin the blood like asprin, motrin etc.
Best of luck and always come here to ask questions, share good and bad news, and to just vent when frustrated.
Bill
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Newly diagnoisedKTeacher said:Welcome
This is a great group for support. You might want to read the Superthread at the top of topics, tons of information to get you on the road. Is the ENT a cancer specialist? Are you going to a Comprehensive Cancer Center? I am also a non smoker, drinker, HPV negative. You are in for a fight but to be a nurse is a wonderful caregiver. Many people have to wait for treatment, go through rounds of antibiotics first before cancer is confirmed. Mine was fast and furious so I didn't have the hurry up and wait.
His ENT is a Head and Neck surgeon specializing mostly in oncology surgery, so I think he Is competent. My son is a GI surgeon so he asked around and got good reviews from his associates. We live in the Dallas/Ft worth area and have excellent resources. However, we have run into trouble with my husbands insurance. He has Secure Horizons and just found out yesterday that there is not a single oncologist in the entire area in his network plan. Unbelieveable, since this is an AARP plan and older people have a highe risk of cancer. So, his primary care physician makes a referral and we wait and see if the insurance approves it. We just want have much choice. We originally said we would go to MD Anderson, if necessary, but now dont know if his insurance would cover it. His insurance has definitly cut benefits this year. I guess we will try to relax and take it one day at a time.
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Newly diagnoisedShell_7801 said:Very similar
Hi Cocogirl,
I am new to this forum myself. Your husband and I sound like we are on the exact same path. I would love to compare notes with our progress. I found a lump on my neck 5/15 and was diagnosed with MSCC on 8/13. Fortunately at the time of my surgery they biopsied my tonsil. It came back as the primary source. I will tell you that finding the primary source is only the beginning of the hurry up and wait game. I want it gone as quickly as possible but it is a long road I'm told. I now have to have a PET scan Monday to make sure it didn't make it any further down into my lungs, etc. If not, then I too will have a modified radical neck dissection (consultation with ENT on Wednesday), after that I'll have both radiation and chemo.
So the schedulers position is going to be empty for 10 days? I'd ask to speak to her boss. Unless she runs the entire office which I doubt. My husband had to make a few loud demands for me along the way and it worked.
My advice is to have a strong trusting relationship with your primary care physician because he or she will coordinate all care going forward and can expedite things for you.
You mentioned chemotherapy for your husband. You don't predict any radiation?
Shell
. Hi Shell, They said chemotherapy and radiation given together rather than consecutively as with most other cancer treatments. I understand that chemo is not suppossed to be that effective alone for this type of cancer, but, experts believe that the chemo given during the radiation makes the malignant cells more receptive to the radiation treatment. I understand that it is a really tough course of treatment, but that the radiation causes the most problem. However, from reading these post on the site, I feel better because everyone is so positive and says even though it's tough that it can be managed and that they always come out on the other side with the confidence that they have done what they needed to do to assure the best prognosis. My husband has such a good attitude. My husband is a very strong, positive person and, I believe, will do very well, as I am sure you will, also. In this life we take things as they come and do the best we can. When tough times hit we usually find that we are much stronger than we ever thought.
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Newly diagnosisedLadylacy said:Cancer
My husband's SCC cancer was found in July of 2010. His was cancer of the laryx and once it was diagnosed radiation and chemo started both within one month.
My best advice would be to find a head and neck specialist who has handled your type of cancer and is very knowledgeable about it. My husband's cancer was found by a very experienced ENT. Hindsight was that we should have asked for a referral to a head and neck specialist. After chemo and radiation we were told he was clear, definitely not true. Until breathing problems came up, we thought he was clear. After an emergency trach and another biopsy we were told the cancer was back. We were then referred to a head and neck specialist. He told us that the cancer never went away and was still there but thankfully hadn't spread. He then had surgery and did great for someone his age. Bad thing was that one year later he was diagnosed with a second primary at the cervical of his esophagus and then spread to his lung. Apparently SCC got into his blood and traveled.
So my advice is to get to a head and neck specialist or an ENT that has much experienced in the field of your type of cancer. We were lucky because our ENT told us he didn't have the experience and referred us to a great head and neck specialist. One thing I have found out on this horrible journey is that you have to speak up and speak up loud to doctors and their nursing staff.
Wishing you the best -- Sharon
Ladylacy, thanks for your advice. Actually his doctor is a Head and Neck surgeon that specializes in cancer surgery. But, as you said, I have found that I must be very proactive and plan to do so. I intent to call the ENT tomorrow and discuss the situation with the appointment. When he first told us the diagnosis he said weeks were ok to think about the options but months would be too long. He also mentioned these cancers are usually slow growing but usual doesnt apply to everyone. He really doesnt know all the specifics of this tumor until a complete histopathology of the tissue is complete. Then they may be able to indicate slow growing. However, I have read several accounts as yours. I understand by researching the literature that a significant percentage return after treatment and that the average time of reoccurance is about five months. I guess we just have to do our best and tackle and treat them as they come along. i wish you and your husband the best.
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Cocogirl said:
Newly diagnosised
Ladylacy, thanks for your advice. Actually his doctor is a Head and Neck surgeon that specializes in cancer surgery. But, as you said, I have found that I must be very proactive and plan to do so. I intent to call the ENT tomorrow and discuss the situation with the appointment. When he first told us the diagnosis he said weeks were ok to think about the options but months would be too long. He also mentioned these cancers are usually slow growing but usual doesnt apply to everyone. He really doesnt know all the specifics of this tumor until a complete histopathology of the tissue is complete. Then they may be able to indicate slow growing. However, I have read several accounts as yours. I understand by researching the literature that a significant percentage return after treatment and that the average time of reoccurance is about five months. I guess we just have to do our best and tackle and treat them as they come along. i wish you and your husband the best.
However, I have read several accounts as yours. I understand by researching the literature that a significant percentage return after treatment and that the average time of reoccurance is about five months.
Not sure where you got this info but SCC HPV+ is very treatable and success rates closer to 90%. Recurrence of SCC seems to occur more like 12-36 months post tx. Once you are clear for 3 years, the chance of recurrence drops off significantly and at year 5 the medical folks stamp you as cured.Do take each day as it comes but do get as informed as possible too. As you research make sure the sources are widely acknowledged as reputable and are science based. Stay way from anything that offers treatments that are not fully supported by the primary medical bodies such as NCI and NCCN.
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donfoo said:
However, I have read several accounts as yours. I understand by researching the literature that a significant percentage return after treatment and that the average time of reoccurance is about five months.
Not sure where you got this info but SCC HPV+ is very treatable and success rates closer to 90%. Recurrence of SCC seems to occur more like 12-36 months post tx. Once you are clear for 3 years, the chance of recurrence drops off significantly and at year 5 the medical folks stamp you as cured.Do take each day as it comes but do get as informed as possible too. As you research make sure the sources are widely acknowledged as reputable and are science based. Stay way from anything that offers treatments that are not fully supported by the primary medical bodies such as NCI and NCCN.
Thanks for the advice. I read the reoccurance rate in a couple of studies. I will have to go back and find it in my files, but that one was studying treatment with radiation alone vs radiation and chemo. Interesting thing was that there was really no significant difference in survival rates using one alone or both in that one study. I am not trying to be negative I just like to have the facts. Mostly what I have been reading is studies involving drugs and radition etc. I believe, most are reputable. But, they are just studies and the case selections, variables, and even the subject of the study influences the outcome. However, I know everyone is a different case, as well as my husband, whom I believe will do well. Your advice is definitly right that I should make sure the things that I read are of reputable standing. Thanks again
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Your husband
cocogirl, I live in the DFW area as well and had all my treatments (radiation and chemo) at Texas Oncology at Medical City and was very pleased with the treatments and progress. I finished my treatment a year ago June 11th so I'm 14-15 months ahead of your husband. My wife is a nurse as well and that will be so helpful as you guys get into this journey.
my primary was my right tonsil and I had Erbitux once a week for 7 weeks and 34 radiation treatments. I did not have a neck dissection and it was stage 4 when we found it. Once I found it we moved pretty fast but I know I probably had it at least 6-8 months before another symptom got me off my tail and to the doctor.
The good news is that if it is HPV based, it has a very high cure rate as Don said. i'm sure your husband's long term prognosis is very good but a pretty rough road to get there. He can do it, especially with you in his corner, but there will be many times when it will really suck.
Good of luck to the both of you. We have some great care locally which will really help.
Keith
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Waiting game
Hello Cocogirl,
I know it seems like forever till they get to your treatment and the waiting game can be frustrating at times. I had noticed a lump on my throat around july 2012 and had asked for a referral for an ENT specialist from my doctor and didn't get one till January 2013, and around the last part of January is when it all started. they ran test after test, I got a PET scan and an MRI and a CT scan,then got blood work, waited for about a week and a half then had a biopsy of the left tonsil, found that to be the primary and then had a swallow test done and after that had a peg tube installed, then had to be fitted for the mask for your radiation treatments, more test and finally the day of treatments came.From january 2013 till the last part of February 2013. lots of stuff to look at before treatments start so hang in there. it'll be here before you know it.I live in the Waco,Tx. area and had a short commute compared to others on here,I only traveled around 112 miles round trip,I think also there is a number you can call that'll help out a little with your gas,It's not much but I think you'll get around $50 card,also the superthread on this site helps out a lot,If you need anything give us a hollar, prayers for you and your husband.
chris
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Timelinecatfish_58 said:Waiting game
Hello Cocogirl,
I know it seems like forever till they get to your treatment and the waiting game can be frustrating at times. I had noticed a lump on my throat around july 2012 and had asked for a referral for an ENT specialist from my doctor and didn't get one till January 2013, and around the last part of January is when it all started. they ran test after test, I got a PET scan and an MRI and a CT scan,then got blood work, waited for about a week and a half then had a biopsy of the left tonsil, found that to be the primary and then had a swallow test done and after that had a peg tube installed, then had to be fitted for the mask for your radiation treatments, more test and finally the day of treatments came.From january 2013 till the last part of February 2013. lots of stuff to look at before treatments start so hang in there. it'll be here before you know it.I live in the Waco,Tx. area and had a short commute compared to others on here,I only traveled around 112 miles round trip,I think also there is a number you can call that'll help out a little with your gas,It's not much but I think you'll get around $50 card,also the superthread on this site helps out a lot,If you need anything give us a hollar, prayers for you and your husband.
chris
I was dx with SCC of the jaw 01/2012 and had my 19 hour surgery by the end of that month. My rads and chemo had to be put off as long as possible (there was a window) to allow healing from my surgery. I finished tx 05/2012. I had a recurrance 08/2013. Recall ENT saying timing was right for that to happen, so it was about a year and a half. I think if you did a poll, you would find more without recurrance here than with.
My best to your husband for an easy journey.
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