Newly diagnosed

Bulldogger1

ahollie said:

where are you?

where are you? we are north of houston...feel free to message me if you want and i can tell you who we used and our experience..my hunny also had stage four that started in his tonsil..he just got a clear scan recently...it is very doable...

I live in Fulshear, which is

I live in Fulshear, which is just on the west side of Katy.  Get my CT results tomorrow morning to see where it has spread.  I know it is in several lymph nodes on the left side of my neck.  I also found out MD Anderson has a Katy office which is pretty close to me, so I am going to call them in the morning to schedule an appointment.  Heard they are are not as busy as the downtown MD Anderson, so should be able to get in to see the doctor in two to three days.  My thoat is pretty sore, so I am ready to get this cancer out. 

hwt

Skiffin16 said:

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MDA

I was first seen at Barnes/Siteman in St Louis and had surgery there but got my actual tx (chemo/rads) at one of their satellite locations which happened to be within a block of my home. Sounds like that maybe what you have found with MDA, if so, that sounds ideal.  I was later seen at Mayo Clinic in Rochester, MN. They coordinated chemo tx with the Barnes/Siteman location down the street from my house.  Hopefully, the MDA satellite location will get the show on the road for you quickly and your journey will be an easy one.

 

cureitall66

Take a deep breath.....

Hi Bulldogger,

Sorry that you had to look up the word "cancer" but happy that you found "us" here while doing that. As many have said, it's not an easy thing to digest. This is very doable and you will look back at this as a small memory.

I'm a caregiver to a loved one....male, age 53, diagnosed Aug 2012, finishing tx Nov 2012. He was dx with Stage IV SCC of BOT (Base of Tongue), with 2 lymph nodes involved, HPV 16 +, non-smoker, mild drinker. Treatment consisted of 7 weeks of chemo, Carboplatin & Paclitaxel (once a wk) & rads (5 days wk). He did get a second opinion and decided on a teaching hospital (U of M), which met with a tumor board.

First, as others have said, stay off the internet. This is mostly outdated information and very difficult to understand for most. Come here and you will seek valuable information along with what you get from your doctors. Be sure to check out the Superthread at the top of the discussion board for additional questions you may have.

Treatment is no picnic, but it is certainly doable. You can do this! There are many here that have been around for many years that still find the time to check in and give advice. You will also find some that have been out for a few years or just a few months, or even starting treatment just as yourself, either way, there are plenty of people here to help.

We are near our 2 yr (from ending tx) check up this November and look back at this as a vivid memory. He is currently doing well mentally and physically. He rides his motorcycle, golfs, works full time and is enjoying life!

Come here when you have the questions, or just need to talk or vent.

God Bless,

 ~C

Bulldogger1

cureitall66 said:

Take a deep breath.....

Hi Bulldogger,

Sorry that you had to look up the word "cancer" but happy that you found "us" here while doing that. As many have said, it's not an easy thing to digest. This is very doable and you will look back at this as a small memory.

I'm a caregiver to a loved one....male, age 53, diagnosed Aug 2012, finishing tx Nov 2012. He was dx with Stage IV SCC of BOT (Base of Tongue), with 2 lymph nodes involved, HPV 16 +, non-smoker, mild drinker. Treatment consisted of 7 weeks of chemo, Carboplatin & Paclitaxel (once a wk) & rads (5 days wk). He did get a second opinion and decided on a teaching hospital (U of M), which met with a tumor board.

First, as others have said, stay off the internet. This is mostly outdated information and very difficult to understand for most. Come here and you will seek valuable information along with what you get from your doctors. Be sure to check out the Superthread at the top of the discussion board for additional questions you may have.

Treatment is no picnic, but it is certainly doable. You can do this! There are many here that have been around for many years that still find the time to check in and give advice. You will also find some that have been out for a few years or just a few months, or even starting treatment just as yourself, either way, there are plenty of people here to help.

We are near our 2 yr (from ending tx) check up this November and look back at this as a vivid memory. He is currently doing well mentally and physically. He rides his motorcycle, golfs, works full time and is enjoying life!

Come here when you have the questions, or just need to talk or vent.

God Bless,

 ~C

treatment

We have decided to go with MD Anderson for my treatment which should start Monday the 22nd, so little over a week a way, which seems like FOREVER away!!   I did a PET scan on Monday and another CT scan today and radiology  doctor told me the primary is in my left tonsil with several lymph nodes affected on that side  ( which had come up on a previous scan) and that I have two small lymph nodes affected the right side.  I was pretty dissappointed to hear that since the first CT scan did not show any lymph nodes were affected on the right side.  I was hoping to get just the treatment on the left side to save my saliva glands on the right side, but dont think that is possible.  Praying all this cancer gets out of my body completely and soon and some of my salivary glands are saved and/or don't completely stop working.

donfoo

Bulldogger1 said:

treatment

We have decided to go with MD Anderson for my treatment which should start Monday the 22nd, so little over a week a way, which seems like FOREVER away!!   I did a PET scan on Monday and another CT scan today and radiology  doctor told me the primary is in my left tonsil with several lymph nodes affected on that side  ( which had come up on a previous scan) and that I have two small lymph nodes affected the right side.  I was pretty dissappointed to hear that since the first CT scan did not show any lymph nodes were affected on the right side.  I was hoping to get just the treatment on the left side to save my saliva glands on the right side, but dont think that is possible.  Praying all this cancer gets out of my body completely and soon and some of my salivary glands are saved and/or don't completely stop working.

good news

Glad you are going to MDA, no reason not to be happy with choosing such a solid facility. Time will pass; meanwhile use the time to eat all your favorite foods and especially the most calorie laden ones you usually avoid.

The fact some nodes showed up on the other side is not a bad thing. The fact they were found is surely better than not being discovered and left untreated. My discussions with the RO wer around radiation mapping, contouring, dosage painting, minimizing organ damage and such. If you are concerned about retaining parotid gland function post tx, have a direct conversation about it and make it know it matters. He'll likely review his mapping or chat with the dosimetrist about some tweaks to do less damage. Basically triggering a review is a good idea.

I was under the impression that dosing was only at the identified areas. In fact, a lesser doage is painted over a broader area to ensure a complete kill of the entire area. Lesser in my case was 60 gy which is still enough to harm the glands. My saliva is 100% and I do believe my concerns lead to at least a second look to ensure minimum collateral damage while still killing the beast.

 

Good luck

don

Goyca

good luck , stay strong

Glad u had ur plan set.

starting rads next week, and it will be over soon... Stay strong and check the superthread for some rad advice.

 

good luck

Goyca.

Sonja.K

Goyca said:

good luck , stay strong

Glad u had ur plan set.

starting rads next week, and it will be over soon... Stay strong and check the superthread for some rad advice.

 

good luck

Goyca.

Superthread

Hi, I am new to this site and have read several people refer to a "superthread".  I am not sure what that is or where to find it.  This site is wonderful,  so inspiring and informative.   Thank you. 

phrannie51

Sonja.K said:

Superthread

Hi, I am new to this site and have read several people refer to a "superthread".  I am not sure what that is or where to find it.  This site is wonderful,  so inspiring and informative.   Thank you. 

Sonja....welcome to this forum....

it's the best one one the internet.

The Superthread is always the first thread on the front page ..... this is the link to it.

http://csn.cancer.org/node/261072

p

jim and i

Well I can't add anything to

Well I can't add anything to what others have said but wanted to let you know I am praying for you and your caretaker. As a caretaker myself I found lots of encouragement on this thread and answers to a lot of questions. I would encourage your caretaker to follow this thread as well.

Debbie

LumpinmyThroat

MDA!

We just finished treatment at MDA last week and I have nothing but good things to say about the place.  You picked a great hospital.  My advice is to EAT EAT EAT now and to be calm.  You will get through your treatment and your cancer will go.  This will be something that happened to you and then got left in the past where it belongs as you go on with your life.  Hugs.

tatemre

Hi Bulldogger

I was living in Connecticut at the time of my initial diagnosis and my doctor reccomended Yale/New Haven in new Haven CT. I dont think I could have gotten better care anyehere else.I was diagnosised with a rare form of Sinus-Nasal Carsinoma  and required a lenthy treatment-chemotherapy every day a week,one week amonth followed by 35 days of radiation and then finishing with the removal of my upper jaw and removal of th tumor. This occured in 1999-2001 and I have been clean since. So I say do you Have Faith, Trust your Doctors and look forward to a long and enjoyable life!!

 

wmc

Bulldogger1 said:

I live in Fulshear, which is

I live in Fulshear, which is just on the west side of Katy.  Get my CT results tomorrow morning to see where it has spread.  I know it is in several lymph nodes on the left side of my neck.  I also found out MD Anderson has a Katy office which is pretty close to me, so I am going to call them in the morning to schedule an appointment.  Heard they are are not as busy as the downtown MD Anderson, so should be able to get in to see the doctor in two to three days.  My thoat is pretty sore, so I am ready to get this cancer out. 

Great choice.....

Great choice on MDA. I have heard that once your diagnoised the chemo and Radiation is all the same. In my opion, that is far from the truth. We had a lady in my home town that had her radiation done local. What a mistake. They burned her neck so bad they had to send her to Stanford Medical to save her. Her brother was so glad when he new I was going to Stanford. She will be ok but she will have to live with unnecessary damage and burning, because they are not as good and don't see that many to have the needed experance. I was sent to a local ONC who is the best in town, to rule out I did not have cancer when I first got sick. He said I don't have cancer and not to worry. In less than a year I had surgery to remove my cancer and It was staged as T4,N2,M0. After surgery it was reduced to T3, N0, M0. I got lucky and they feel with SCC I had it over a year. All I can say is DON'T GO LOCAL, unless they are National rated in the top twenty.

Best of luck, and you now will be OK.

Bill

thennies61

duck1255 said:

Treatment center

 My choice was to go to a major cancer treatmenrt center. I live in a small town and wasnt satisfied with the answers from our local oncologist. Went to Cleveland Clinic and it was totally different their treatment plan was more up to date and the out look more positive

The clinic is good I ended up

The clinic is good I ended up going to University and Dr Zindar did the surgery and all my follow ups so far.My one complant is that he was to slow.Wouldn't take trach out till treatment was done wouldn't take out peg tube till pet scans were done.But either hospital are the best around for care and up to date treatments

lornal

Where to go

I live in a large city, and for my first cancer, my primary care sent me to a surgeon (at the time, it was just a swollen lymph node).  She sent me to the wrong kind of surgeon - a neck surgeon, not an ENT.  But, there happened to be one there at the time - and he saw me.  The biopsy was negative (w/ 3 good samples).  But, I returned to him after it swelled up more - and we were both suprised that it was cancer.  Turned out to be tonsil - had surgery, radiation, and chemo.  I was at the perfect hospital and perfect hosptial for me.

Fast forward 6+ years.  Went to a different ENT - an expert at a teaching hospital (my ENT was on vacation)  He wouldn't touch this.  We started to look at MD Anderson, and my ENT finally got back in town and called me.  He recommended a different ENT at a different teaching hospitla in town.  Good, we could talk to both.  Before anything else happened, I ended up in the emergency room, got a tracheotomy, and by default, had the recommended ENT at the recommended hospital.

8 months later - I am here to talk about it!

So, differnt types of H&N cancers require different types of doctors.  Find one that is confident to treat your cancer, and who you are comfortable with, and where you are comfortable.

Lorna 2007 & 2014

Hondo

Hi Bulldogger

 

Welcome to the family here on CSN H&N, just want to tell you there is nothing to be afraid of many of us all went through the same thing and we are all survivors. It will be hard on you when you start treatment but once you are finish you life gets back to a new normal and you keep on going.

 

All the best to you as you begin your journey

Tim Hondo  

Hondo

Bulldogger1 said:

treatment

We have decided to go with MD Anderson for my treatment which should start Monday the 22nd, so little over a week a way, which seems like FOREVER away!!   I did a PET scan on Monday and another CT scan today and radiology  doctor told me the primary is in my left tonsil with several lymph nodes affected on that side  ( which had come up on a previous scan) and that I have two small lymph nodes affected the right side.  I was pretty dissappointed to hear that since the first CT scan did not show any lymph nodes were affected on the right side.  I was hoping to get just the treatment on the left side to save my saliva glands on the right side, but dont think that is possible.  Praying all this cancer gets out of my body completely and soon and some of my salivary glands are saved and/or don't completely stop working.

MDA

MDA Houston is one of the best treatment centers I know of; Dr Hanna was the one who was taking care of me. The thing I like about him most was that he told it like it was and always made me feel good even if the news was bad.

 

Tim Hondo