neck lump

You have stumbled on the best group on the internet.  The folks here are very supportive, kind, and informed.  It sounds to me like he has SCC (squamous cell carcinoma) with no known primary.....there are many here who have had the same thing, and with good results.  I swear some of these Drs. either get their information from the internet, or maybe looking for a hero award when things turn out great??  The survival rate of Head and Neck cancer is far higher than 40%.....my ENT told me 80%. 

Because he has no known primary, they will radiate a greater range of tissue, but he'll have the normal number of treatments (anywhere from probably 30 to 35 days)....and maybe chemo, also.  Did they say anything about chemo? 

Most of us were Stage III or IV when we finally got past the antibiotics and on to the specialists.....and we're still here to talk about it. 

Are you in Vancouver, Wa. or Vacouver BC?  If you're in the states, then a second opinion might be the way to go....I don't know if you can do that in Canada....but if so,  then a second opinion is what I'd be looking at.....if for nothing else, a Dr. who is a tad bit more optimistic.....

p

Sorry for the cancer in your son. He's lucky to have you to care so much about him and be able to be near during treatment. Surgery followed by chemo/radiation is a common treatment plan. I did not see any reference to HPV status in your note. There is quite a difference in survival rates between HPV positive and negative cases. Either way, you should not focus on prognosis and only treatment for now. Do your best to attend to the side effects and ensure as much comfort as possible.

Remember the three things to watch over. Hydration - plenty of water every day. Nutrition - get calories in anyway you can. Pain management - get whatever narcos you need to kill the pain. Do these well and you will get through as smoothly as possible.

Good luck, Don

Sorry you need to be here, but welcome.

I do beleave the rate is very much higher. I was Stage 3 SCC [Squamous Cell Carcinoma] T3; N0; M0 and had no RAD or chemo, only surgery and did a lot of research plus my Doctors said survival is very high. I beleave over 80%.  Very sory for both you and your son and family. I had a lump that you could see in my neck that was just a lymph gland doing it's job and it did not have cancer. They did find my tumor and removed it. It is scarry and the unknown is tought but your son can beat this as so many have done.

wmc

Welcome.  You have come to the right forum for support and information.  There are plenty of us here that have been around a long time...some for a few years, and some that are either entering or coming out of treatment.

I was a caregiver to my loved one who was diagnosed SCC Stage IV BOT (base of tongue), HPV16+, 2 lymphnodes.  His treatment consisted of 35 rads, 7 chemo.  He was dx Aug 2012, started tx early Oct 2012 and ended at very end of Nov 2012, had PET scan Feb 2013 with NED (no evidence of disease).  No surgery. It was tough, but doable. We are looking forward to celebrating our 2 yr NED in November!

I would suggest getting a second opinion if there are any doubts.  I know there are a few on here that had an unknown primary and have done well with treatment. I would also suggest you ask them to test for HPV as there are many here that had that as the leading cause...especially if he is a non-smoker, and non-drinker. If you think your son could use some mental support, I would also suggest he comes here.  It may make him feel much better knowing he's not alone with this.  Having support before, during, and after tx are important as this is a tough thing to soak up.

Not sure if anyone mentioned the "Superthread" at the top of all the posts, but it has several topics that may help during the process.  Look forward to your posts and helping you through this process.

God Bless,

~C

...oh, our treatment facility U of M told us 90% cure rate for the type of cancer (HPV+)

cureitall66 said:

Welcome....

Welcome.  You have come to the right forum for support and information.  There are plenty of us here that have been around a long time...some for a few years, and some that are either entering or coming out of treatment.

I was a caregiver to my loved one who was diagnosed SCC Stage IV BOT (base of tongue), HPV16+, 2 lymphnodes.  His treatment consisted of 35 rads, 7 chemo.  He was dx Aug 2012, started tx early Oct 2012 and ended at very end of Nov 2012, had PET scan Feb 2013 with NED (no evidence of disease).  No surgery. It was tough, but doable. We are looking forward to celebrating our 2 yr NED in November!

I would suggest getting a second opinion if there are any doubts.  I know there are a few on here that had an unknown primary and have done well with treatment. I would also suggest you ask them to test for HPV as there are many here that had that as the leading cause...especially if he is a non-smoker, and non-drinker. If you think your son could use some mental support, I would also suggest he comes here.  It may make him feel much better knowing he's not alone with this.  Having support before, during, and after tx are important as this is a tough thing to soak up.

Not sure if anyone mentioned the "Superthread" at the top of all the posts, but it has several topics that may help during the process.  Look forward to your posts and helping you through this process.

God Bless,

~C

...oh, our treatment facility U of M told us 90% cure rate for the type of cancer (HPV+)

Prayers that your son has an easy and successful journey. 

concerned parent said:

neck lump

Hi..can someone explain to me what HPV+ means. Im finding that goggle is kind of confusing me what that means. It sounds like its important in the testing procedure so I want to make sure we have this covered. Thanks.

HPV, the human papillomavirus.

HPV has come into play a lot over the last several year concerning H&N Cancer... You more than likely have heard of it mostly concerning cervical cancer in young girls and Gardisil Injections for possible prevention.

While treatment is the same whether you are or are not HPV+ derived cancer. The thought is that HPV derived cancer in H&N tends to respond a little better and have a little better out come long term.

But with everyone being different, there are ton's of variables that come into play...

John

Guzzle said:

SCC

Hi Everyone. I am new to this and from Liverpool England. This site is an inspiration. I have seen another guy from Liverpool and an amazing person who has survived SCC for 20 years in various posts. I am 47 and had a long smoking history although quit. I am going i Monday for a removal of what is eith a Branchial Cleft Cyst or Submadibular cancer. Given my age etc the odds are that I have cancer.  I surived teritoma of the testicle 25 years ago. I was training for the marathon in May to support a local cancer hospital. If any of you amazing people have had either a neck dissection and/or radiotherapy I would be really greatful if you could tell me how long it takes to get active again and also the debilitating impact on the shoulder. I know this will vary from person to person but any insight would be great.

 

All the Best and Thanks

guzzle, i recommend that you copy and paste your post into a new post so it can receive the proper attention and get the replies.  i had rad tx first and they were rough but i came thru them alright.  it took so time for me to be able to eat and my neck was burned pretty bad but aqua4 helped tremendously with the burn.  2 years later i had a neck dissection for recurrence and i had a much harder time recovering from that.  i developed a fistula which took forever to heal and in fact required another surgery.  hopefully, you will not have any complications.  it took me about a month to recover from the neck dissection well enuf to go home from hospital.  i truly don't know why it took me so long as my memory of the surgery doesn't exist.  many here have had neck dissections without any complications and healed just fine.  i'm sure they will chime in for you.  to start a new post, go to top of topics page.  you'll see "start a new topic".  click that and create your post.  good luck.

dj

concerned parent said:

neck lump

Hi all, its true there has been many advances in the treatment for cancer. Unfortunately there are still Doctors out there who could use some skills in dealing with people who are trying to stay positive in dealing with the cancer and treatment. Ive been told over and over that maintaining a positive attitude is so important in dealing with this yet there are Doctors that start their discussions with the words " unfortunately ". Hopefully some of them learn they have alot to do with how their patients deal with the cancer and the treatment.

Concerned parent. Good luck to your son. In in hospital recovering from my operation with a similair condition. They found a small primary on my tonsil and my surgeon suspects hpv although I await biopsy. I will start RT in about a month. I just wanted to say my surgeon was much more positive and hoped to get more than 5 years out of me. He is renowned in his field and we have the world famous Clatterbridge hospital here. I know this is a worry but me and your son are still here. Look to all these fine people who are also. All the luck in the world to him. I will be looking for tips from him via yourself on coping with RT!