Hi all,
I am a 39 year old relatively healthy male and was just diagnosed with SCC. I had a cluster of nodes removed last week and they were sent to pathology. Came back HPV positive and cancerous - SCC.
I have a 2 year old boy and my wife is due with our second boy in 2 weeks. There is no other option than cure.
My ENT is scheduling me at the local cancer center to be see by an oncologist and radiation therapist. I assume this will happen after aPET scan. We have good insurance, and my outlook is usually to be aggressive. Mistakes are costly, so I am looking for any advice. I want to see my boys grow up.
I'm new at this so forgive me for any faux pas!
Glad you found us, sorry your here. Your story is just like mine. See my signature line. This is curable stay positive, learn as much as you can, and find a CCC. I am still new here but this site has been a life line to me.
Thanks Hockey Dad -
I played in college so I plan on seeing my boys on the ice as well!
This all happened so fast!
Be well,
Ray
Ray,
To be diagnosed with HVC+ SCC is the best way to have SCC. Your chances of recurrence are far less than with HPV- SCC. The Tx will be tough but your outlook is good so do remain positive as you imbrace your cancer. IMO where you get your Tx is critical so I would highly recommend you seek an opinion from a NCI Designated Comprehensive Cancer Center close to you.
We all totally get the "head spinning" thing....it is so overwhelming.
You will benefit so much by just reading all the posts here. There is so much to take in but slowly but surely you will get your head wrapped around this and start a plan of action along with your physicians.
You have your youth and determination going for you (and of course that HPV+ dx) plus you have found here a great source of information and emotional support.
All of us will back David on being seen at a Comprehensive Cancer Center (CCC)....their multidisciplinary approach and the fact that their head and neck departments see 100s of cases a year gives you the best chance of a good outcome.
We wish you the best on the start of this journey...
Deb
Hi Ray,
I personal messaged you. Please keep in touch.
Kathy
Welcome to OCF! Not sure if I missed something or not, where exactly is your cancer?
At this time anyone who offers to help you write down their name and number and let them know you will call them when the time comes. Having a newborn is alot of work and doing it while going thru treatments will be difficult. You will need help and I hope you will not be too proud to accept it.
Your very best option is to go to a top notch cancer center. Here is a list of the country's top treatment facilities for oral cancer.
Top Cancer Centers Now is the time for you to eat all your favorites. Dont worry about gaining weight, eat everything now so you have no regrets. Your sense of taste will probably change for a while and swallowing may become difficult so eat now.
Best wishes!!!
Ray, adding my welcome and I agree with all the previous posters. That your cancer is HPV+, as I'm sure you're learning, is a very positive development. With a good medical team, your obviously excellent frame of mind and the support of your family and friends you'll definitely come through this. Although all of us will tell you that whenever chemo and radiation is involved, things will at times be tough.
But I have total confidence in you. Please keep us informed all along the way. Whatever questions might arise there will definitely be someone here with a knowledgeable answer.
Courage!
My husband was diagnosed on 10/1- so I can tell you the head spinning gets better. I can now say "cancer" without crying. Telling family and friends was very hard- but now that we have a plan, we are moving forward and living with this disease. Just to forewarn you though- it takes some time to get all of the things in place for treatment. I wanted my husband to start treatment the week after he got diagnosed, but I learned this takes a bit of time especially to get radiation set up. My husband had surgery on 9/21 to remove a mass from his neck, got positive results on 10/1, and it will probably be 11/1 before his treatment actually starts. I agree with others- go to a place that sees and treat this a lot- if you are in NY Sloan Kettering would be a good choice.
Hi Ray,
We are about to start our treatment this MONDAY at Sloan and we can PM about it. In fact we are neighbors!
My husband was dx in 9/6 and after visiting Mayo, MD Anderson we chose Sloan. Being from LA we did not like UCLA. Our tumor is inoperable which means only chemo radiation. that helps narrow options. (but its better i think to be smaller and operable!) As you find out more you will see what options exist.
we are terrified also of what is to come and I have been taking to heart Christine's and David's advice about calorie intake and hydration!
In NY, Mt Sinai has a different approach than Sloan. I think they do induction and Sloan does concurrent. It's like the bloods vs the crips!
being a newbie I can only commiserate. The pros here know lots!
Hang in there. Take it One Day At A Time is my internal mantra.
Welcome ray!
Do you happen to know what stage the cancer is as well as the location?
I concur with the others, go to the top notch CCC, it's okay to get more than one opinion, in fact, I encourage it! You want to get rid of this beast and go through it once, so make it count! You sound like you have all the right motivation you need (your boys and wife) to beat this disease.
Browse the board and write down any questions you may want to ask your team of doctors. We are here for you, you are not alone.
Sorry if I was not clear. They have yet to find the primary source of the cancer. When they removed the cluster of nodes and sent them to pathology they returned the diagnosis of SCC and HPV.
I assume they will find it with the PET scan.
There are no outward signs of any other cancer which is the most alarming. I feel fine, other than being tired from working full time, chasing a 2 year old around and trying to keep my 8.5 month pregnant wife off of her feet.
I just made an appointment at Memorial Sloan Kettering in Manhattan for a second opinion.
Here is a follow up for the group.
If I seek treatment at Memorial Sloan in Manhattan, how are the logistics handled. We live 3 hours away so daily treatment will require a temporary relocation. How debilitating (understanding everyone reacts differently) are treatments? While our insurance is very good, someone still has to work. Just wondering how folks deal with piece.
Thanks,
Ray
Welcome to the OCF!! You are in the right place since you will find receive a lot of help and encouragement. I was once very problematic about my mother-in-law's T4a Mandibular cancer. But since I joined this forum my outlook has changed.
We will be thinking of you and hoping that the best. Eat and rest well. Like what Christine said now is the time to have all the yummy food you crave.
Sending you positive thoughts!!
Ina
Brady,
Sometimes with HPV+ SCC the Primary is eliminated by our immune system AFTER some cancer cells have broken off and find their way to the nodes so it is possible that they may never find the Primary.
My husband has a story very similar to yours. Found a mass in his neck- turned out to be 2 lymph nodes clustered together. Then we went through figuring out where the primary was. PET scan showed BOT and then he had a laryngoscopy with biopsy on 10/10 that confirmed BOT was primary. This was after months of back and forth with various doctors and we finally went to Cleveland Clinic (#2 in US for Head and Neck) and got an accurate dx and recommendations for treatment. We could have had chemo and rad in Cleveland, which would have been very inconvenient and no family support around for us. It appears the standard treatment for this is Cisplatin and Radiation- which can be done closer to home. So my point is, consider going to Sloan for proper diagnosis and recommendations for treatment and then have treatment carried out closer to home. When my husband looked at what living in a hotel would be like for 7 weeks in a place where we had no family support versus being in his own bed every night with family close by, the choice was easy for him. He is like you in that he feels perfectly fine- no symptoms at all- and the time from when he was first officially diagnosed (10/1) to when treatment will actually being (around first week in November) is very long and stressful- as it feels business as usual. Would never know anything was wrong by looking at him or talking to him but all that is about to change.
Good luck and I am praying for you and your family.
Hi Ray,
Some people do handle working for the first few weeks. It's just hard to count on until you are in the thick of it. I know what you mean about the commute. Kevin and I just couldn't see how we could do it and be with the kids since ours are all school age. Luckily we had an mo from Sloan Kettering that had opened a clinic here in Elmira. He is gone now, so not sure what we will do for a recurrence if one happens. Have you asked at Sloan if there is any housing available there? I know I have a friend that had a lodge type place for families going through tx. Not in NY though.
If you do induction chemo you could go there, get it done and go home for a couple weeks. You would have to have a doc nearby for emergencies though. If they do chemo/rads together then it would be everyday for the rads and you are right, you'd have to relocate for the 6 weeks or whatever I guess.
Be sure to write down EVERYONE that says they will help. VERY important to have that support for you and your wife.
Blessings,
Kathy
Ray,
If it turns out to BOT (my guess). The standard treatment is 7 weeks of rad plus chemo. I am three weeks in. I worked from home a little the first 2 weeks. Now, forget it. I don't recommend driving either and I am only 12 miles from the treatment center. I get my second dose of chem tomorrow and expect to be ill for the next week.
Also the three weeks after treatment may be the worst. My point is you are going to find it difficult to work for a couple of months. It could be shorter or it could be much longer.
The treatment is hard stuff. My advice is plan on being out of service for a while. If you get by easier, great. But I can tell you it is not a lot of fun. You will need help. Get all that you can.
Ray, we traveled 3 hours each way for my husbands treatment and luckily heard about The Hope Lodge through the American Cancer Society. It was a blessing finding this wonderful place where we could stay with no charge. Very nice rooms with a 6 community kitchen that are shared. We met very wonderful people that worked there and were there as guests also. There are 3 locations in NY, not sure which would be closest to you.
American Cancer Society Hope Lodge�Buffalo
Buffalo , NY Phone: 716-882-9244
American Cancer Society Hope Lodge Jerome L. Greene Family Center�New York City
New York City , NY Phone: 212-492-8400
, NY
American Cancer Society B. Thomas Golisano Hope Lodge and Hospitality House�Rochester, NY
Rochester , NY Phone: 585-224-4936
Hope this is helpful. As far as driving my husband usually drove especially when we were rushed for time or there was a lot of traffic but I often took over when coming home when he started falling asleep. He is a Pastor and did work much of the time throughout treatment, even drove home Wed. night just to do a parenting class all but two weeks. He never missed a Sunday during treatment although he did look pretty bad for awhile with his red neck and weight loss.
Wishing you the best, Terri
I disagree w/ Lady re "it doesn't matter where you get the TX". IMO it matters a lot. Knowing WHAT the Tx will be and knowing HOW to administer it are as different as knowing what to do to fix your car and knowing how to do it. Designing the correct radiation plan and making sure it is followed can make a huge difference in life altering side effects. Moffitt gave me the option of being treated in St Pete, way closer to my home, but after talking to Moffitt's Dr Trotti, a leader in IMRT technology, I decided to make the 90 round trip miles every day for 7 weeks and I'm glad I did. Remember this is ONLY 7 weeks out of your entire life. Why take a chance with your body and the rest of your life? Go with the best and minimize your risk.
I 100% agree with David. The treatment center absolutely does make a difference. If someone is going to radiate your head, you want the mostly highly skilled crew possible. Originally, my husband was offered treatment at our local, quite good, suburban hospital. Considering where they were radiating, we immediately arranged consults at MD Anderson, Mayo Clinic & University of Chicago, keeping Sloane Kettering in reserves, if we needed another choice. We got our kids covered by a family member, then did not allow geography to play any role in the decision of a treatment facility...the only factor being, where would my husband have the best chance of survival.
I stood at an observation booth, behind the women administering my husband's radiation this past summer for every one of his 50 rads. My main (self-assumed) role, was to watch his feet like a hawk, in case he got in trouble (i.e. started choking). While I stood there, I could also see the screen that showed the ever changing shape of the radiation beam that was treating (burning...whatever we want to call it) my husband, as the maching moved around his head. All I could think was, thank God his rad onc was so freakishly smart, thank God the room full of planners we walked every day were so good at their jobs as well.
When you consider the increased risk on reoccurances, you want do not want to leave anything on the table on the first shot at getting this cancer. Why not stack the deck, as much as possible, in your favor?!
[quote=davidcpa]I disagree w/ Lady re "it doesn't matter where you get the TX". IMO it matters a lot. Knowing WHAT the Tx will be and knowing HOW to administer it are as different as knowing what to do to fix your car and knowing how to do it. Designing the correct radiation plan and making sure it is followed can make a huge difference in life altering side effects. Moffitt gave me the option of being treated in St Pete, way closer to my home, but after talking to Moffitt's Dr Trotti, a leader in IMRT technology, I decided to make the 90 round trip miles every day for 7 weeks and I'm glad I did. Remember this is ONLY 7 weeks out of your entire life. Why take a chance with your body and the rest of your life? Go with the best and minimize your risk. [/quote]
But David,
Your same Dr. Trotti who knew our local MO and RO gave his blessings and suggested that we would be fine treated locally. He was familiar with both docs and their facility and equipment. Driving for us would have been a 200 mile roundtrip and Bill was receiving rads twice a day so we would have opted to stay at the Hope Lodge at Moffitt had we had treatment there. Fortunately we had an easier option.
Everyone has a little different situation and yes, you must research to make sure the facility you are choosing applies best practices but sometimes there are good options locally.
JMTC,
Deb
But Deb....luv you now....
I agree that everyone's situation can be different but the over riding consideration should be where can I get the best possible treatment. Everything else should be a distant second. Now I'm sure that there are treatment facilities that can and do provide great OC treatemnt and just going to a CCC doesn't guarantee the best BUT what I said doesn't change that, taking everything into consideration IMO going to a CCC to be treated will minimize your risks and again this is only 7 weeks out of your life so before I would opt for convenience I would want to make sure, as you and Bill did, that I was not potentially sacrificing long term health for convenience.
Trotti told me post Tx that he had stopped designing radiation plans for other doctors where the treatement was not going to be at Moffitt because 1. he didn't have the time and most importantly 2. he feared that he would not be able to make necessary adjustments along the way. He also told me that just because you have an IMRT doesn't mean you are the best operator of it.
So if you do your homework and are satisfied that you or your loved one will get the same or better treatment locally then you have made the best possible decision but if you have any doubts then stick with the facility that minimizes the risks.
[quote=davidcpa]So if you do your homework and are satisfied that you or your loved one will get the same or better treatment locally then you have made the best possible decision but if you have any doubts then stick with the facility that minimizes the risks. [/quote]
Totally agree and there are probably more times that you should have treatment at the CCC vs a local facility but I wanted to put a face to the alternative that so far has worked for us. I did do tons of research and got several opionions before we made our choice. Some people would choose not to be bombarded with all that input and simply take the path of least resistance but I say..knowledge is power! Had I had any concerns we certainly would have chosen to stay in Tampa for that 7 weeks.
I think we are definitely on the same page here...due diligence is in order.
Deb
Extremely brillant people think alike, or something like that. lol
Clarification- we happened to live near Moffitt so no need to travel to Cleveland for treatment when Moffitt was closer to home. Not sure why we didn't get referred there to begin with (one doc said it was probably a business decision not to refer) but anyhow we got a second opinion. I am glad we did after reading many posts on here. Doesn't hurt. I agree go with the best and also get more than one opinion.
Who are you seeing at Moffitt?
[quote=Lady1]Clarification- we happened to live near Moffitt so no need to travel to Cleveland for treatment when Moffitt was closer to home. Not sure why we didn't get referred there to begin with (one doc said it was probably a business decision not to refer) but anyhow we got a second opinion. I am glad we did after reading many posts on here. Doesn't hurt. I agree go with the best and also get more than one opinion. [/quote]
We got no referral (local ENT was very weak in all arenas..we never went back) either so I self referred by calling them and setting up an appointment. I was able to get a time within a week so I did not feel as though they put me off because of this.
Having said this, our insurance allowed me to do this...some would require a referral.
Deb
Well, I visited a RO Monday and had many questions answered. He laid out the 5 different treatment options and did a thorough physical exem.
I have a PET Scan on Friday that will give us more results - ultimately helping to give direction to which treatment will be best for my situation. He also recommended I get a second opinion on treatment from an RO at Beth Israel in NYC. We believe to have found the tumor on my right pharyngeal wall. It is small 2 cm by 2 cm. if this is in fact the tumor and there is no other spread I may be a candidate for surgical removal and radiation with no chemo.
I have started the process to get a second opinion at MSK.
Fingers crossed for good news.
The worst part of this whole process is not knowing what to do. I am a type A personality that usually has the answers - I'm really out on a limb here so am at the mercy of others.
You are in the right pace to get answers. We will help guide you thru everything plus our members are a great support system.
Get business cards and keep them from every single appointment. Also take along someone to be an extra set of ears. Some doctors will allow a patient to record their session, ask first. Then you can go back and replay it in case you forget something they reviewed with you.
Best wishes with your appointments!
Don't be too quick to rule out more aggressive treatment. You want to giive it the best shot the first time around. Just my opinion though.
Thanks for keeping in touch!
Kathy
I wish you the best. You can and will get through this. I was diagnosed with BOT/SCC in 1999. I refused to accept my doctor's opinion which included surgery, etc. I did some alternative items that worked for a while but in 2002, I had to make a decision. But I had found of a less invasive treatment by that time, no surgery. 10 years later, still no problems.
Thanks,
Mac Caldwell
Paris, TN
J McCaffrey ENT and J Caudell Rad Onc. Have not seen MO yet. Any advice where to park? Don't like valet parking.
No place other than valet parking. Why not like it, drop off and pick up right at the front door. The people parking your car are college student. The tips they get help them with their college expenses. I love it.
Yep no other place except across the street and as Connie says it only costs you tips. There re 3 places to drop your car off, radiation, chemo and Main depending upon where you are headed that day. Judy is great but I don't know Caudell. When do the Tx's start? When it a MO visit planned?
We are waiting to find out when treatment starts. They tell us within 1 1/2 to 2 weeks after the simulation and he had the simulation this past Wed. He sees MO Tuesday. So end of next week or the following week. Anxious to get things going. He was dx 10/1 but mass noticed in Feb so want to get started. My husband has a Porsche so he's not too fond of college students driving it...that is why I was asking about parking.
Welcome to our home. The advice you were given here is all the best. I look like a Gpber but am stil alive. Keep the positive attitude and you will be fine. treatments are tough but nothing you can't handle. Come out swingin.