New Diagnosis-Going to Siteman Cancer Center-Anyone else?

MJG1
MJG1 Member Posts: 137 Member
edited July 2016 in Head and Neck Cancer #1

Hi,

My husband is newly diagnosed with Head and Neck cancer involving the right base of tongue, right tonsil, 4 lymph nodes, and a muscle in his neck.  PET scan results were that it has NOT spread to other body parts.  We're still waiting to see if it is HPV positive or not as the first biopsy didn't have enough cells to show this.  After that result comes in we will know the path that we have to take.  We're certain of chemoradiation, but surgery is dependent on our biopsy results.  Do any of you have similar cancer locations and can you share your experiences a bit?  Thank you.  MJG1

Comments

  • lornal
    lornal Member Posts: 428
    #2
    St. Louis

    I had my treatment for tonsil cancer in 2007 at Mo Bap. I had surgery (tonsilectomy, modified radical neck disection - including a muscle), chemo, rads.  In 2014, I had my surgery for hypopharnx cancer at Barnes.  Had a total laryngectomy and reconstructed upper esophagus, but no chemo or rads.  I did talk to the H&N rads dr, and the the chemo doc.  Gratefuly I didn't need them.  Its a great place I hear.

    Lots of BOT diagnosis on this board.  I'm sure they will be chiming in.

    Lorna 2007 & 2014.

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited July 2016 #3
    welcome

    MJG1,

    Welcome to the H&N forum, sorry that you are here, but you can be confident that there are many good cancer treatment centers.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  I was treated in Corvallis, Oregon and I am 4+ years NED and doing nicely.

    If you have any doubts about doctors or treatment center, then seek out multiple opinions.

    Experience, yes, frontline.  Treatment side effects can be difficult, but most are manageable and everyone here has some helpful hints.

    Starting today, start drinking water and swallowing often, go out and enjoy some very fattening meals and if you have the time, read the superthread for valuable information.

    Good luck,

    Matt

  • MJG1
    MJG1 Member Posts: 137 Member
    #4
    lornal said:

    St. Louis

    I had my treatment for tonsil cancer in 2007 at Mo Bap. I had surgery (tonsilectomy, modified radical neck disection - including a muscle), chemo, rads.  In 2014, I had my surgery for hypopharnx cancer at Barnes.  Had a total laryngectomy and reconstructed upper esophagus, but no chemo or rads.  I did talk to the H&N rads dr, and the the chemo doc.  Gratefuly I didn't need them.  Its a great place I hear.

    Lots of BOT diagnosis on this board.  I'm sure they will be chiming in.

    Lorna 2007 & 2014.

     

     

    St. Louis

    Thank you for your reply.  I'm sorry you have had to go through it again!  Do you know if yours was HPV negative or HPV positive.  Also, are you able to lift your arm where the muscle was removed?  Thank you!

  • MJG1
    MJG1 Member Posts: 137 Member
    #5
    CivilMatt said:

    welcome

    MJG1,

    Welcome to the H&N forum, sorry that you are here, but you can be confident that there are many good cancer treatment centers.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  I was treated in Corvallis, Oregon and I am 4+ years NED and doing nicely.

    If you have any doubts about doctors or treatment center, then seek out multiple opinions.

    Experience, yes, frontline.  Treatment side effects can be difficult, but most are manageable and everyone here has some helpful hints.

    Starting today, start drinking water and swallowing often, go out and enjoy some very fattening meals and if you have the time, read the superthread for valuable information.

    Good luck,

    Matt

    CivilMatt

    Matt, Thanks for the response.  We're hoping for the HPV positive diagnosis since it responds better to chemoradiation!  I'm cooking some special items, but he is already having trouble swallowing.  Uggh.  The wait is tough.

    MJG1

     

  • lornal
    lornal Member Posts: 428
    #6
    MJG1 said:

    St. Louis

    Thank you for your reply.  I'm sorry you have had to go through it again!  Do you know if yours was HPV negative or HPV positive.  Also, are you able to lift your arm where the muscle was removed?  Thank you!

    HPV-

    I was not HPV positive.  In fact, not a smoker nor a drinker.  And female to boot.  Who knows why I got it?

    The muscle removed was from behind the ear down to the chest.  Lifting wasn't a problem.  I think for people with lifting problems, it is usually a nerve (I could be wrong).  Stiff neck.  Needs exercise.   My right upper chest, shoulder, neck ear, and down my back - I don't have much feeling.  After the surgery - that was actually a good thing, as I slept on my side.

    FOr the 2nd surgery, I had the neck disection on the left side - but very few scars there - because they did it from the inside (but, I do have a nice hole in my neck - lol)

    WHo is the ENT?  I had Dr. Bruce Haughy, but he moved to Florida.  I had gone to SLU first for this 2nd cancer, and that dr. would not touch it.  Dr. Haughey got it all!  Now, I see Dr. Ryan Jackson.  Seen him a couple of times.  I like him - hope I never have to use his services other than just checkups!

    Lorna

     

  • MJG1
    MJG1 Member Posts: 137 Member
    edited July 2016 #7
    lornal said:

    HPV-

    I was not HPV positive.  In fact, not a smoker nor a drinker.  And female to boot.  Who knows why I got it?

    The muscle removed was from behind the ear down to the chest.  Lifting wasn't a problem.  I think for people with lifting problems, it is usually a nerve (I could be wrong).  Stiff neck.  Needs exercise.   My right upper chest, shoulder, neck ear, and down my back - I don't have much feeling.  After the surgery - that was actually a good thing, as I slept on my side.

    FOr the 2nd surgery, I had the neck disection on the left side - but very few scars there - because they did it from the inside (but, I do have a nice hole in my neck - lol)

    WHo is the ENT?  I had Dr. Bruce Haughy, but he moved to Florida.  I had gone to SLU first for this 2nd cancer, and that dr. would not touch it.  Dr. Haughey got it all!  Now, I see Dr. Ryan Jackson.  Seen him a couple of times.  I like him - hope I never have to use his services other than just checkups!

    Lorna

     

    Dr. Jackson

    Lornal,  Dr. Ryan Jackson is the ENT my husband is seeing at Siteman.  we  We liked him, but hope surgery isn't necessary.  The Team meets this week and we will see how that biopsy came out and take the next steps. 

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #8
    Sorry you are here

    MJG1, 

    You found a good site with knowledgeable people that have traveled many different paths with this Head and Neck cancer. I too was a Base of Tongue cancer patient. Tumor was on right side with a lymphnode involved on that right side as well. 

    I chose surgery to remove the cancer which involved the removal of part of my tongue, a Radicial Neck Disection with the removal of the SCM muscle. I had follow-up radiation treatments with no Chemo. The Surgeon and Radiation Ocologist kept Chemo as a back-up at that time in 2004. 

    It is a bumpy road we travel, but the road levels out after all this to a new path and new normal.

    My Best to You and Everyone Here

  • MJG1
    MJG1 Member Posts: 137 Member
    #9
    MarineE5 said:

    Sorry you are here

    MJG1, 

    You found a good site with knowledgeable people that have traveled many different paths with this Head and Neck cancer. I too was a Base of Tongue cancer patient. Tumor was on right side with a lymphnode involved on that right side as well. 

    I chose surgery to remove the cancer which involved the removal of part of my tongue, a Radicial Neck Disection with the removal of the SCM muscle. I had follow-up radiation treatments with no Chemo. The Surgeon and Radiation Ocologist kept Chemo as a back-up at that time in 2004. 

    It is a bumpy road we travel, but the road levels out after all this to a new path and new normal.

    My Best to You and Everyone Here

    To MarineE5

    Thank you so much for your enouragement.  I'm so happy you are living proof this too shall pass!!  Do you know if you were HPV negative or positive?  Also, was your cancer at the base of your tongue??  If ours is not HPV positive we face surgery through the neck, as well as chemoradiation.  If it's HPV positive we will be doing chemoradiation only with no surgery.  It's all so overwhelming and worries me so much for my husband.  Have you regained swallowing?  Also, has your speech changed much?  Thank you so much for taking the time to respond.

  • tomb247
    tomb247 Member Posts: 54
    #10
    St Louis

    I am 16 months our from Stage 3 BOT/Tonsil treatment and live in the STL area. I had 30 IMRT treatments over 7 fields. 

    Just an FYI that there is a HN Cancer Support group meeting this week at the Pratt Cancer Center at Mercy in Creve Coeur.  They hold meetings once a month and this months topic is for the caregiver.

    I would be happy to share my experience with you and your husband just to give you some background information on my journey thus far. Feel free to message me and here is the link for the registration.  

          https://www.onlineregistrationcenter.com/registerlist.asp?m=4256&p=352&group=67&s=4&headers=42135&vs=6&deh=1&pp=15&keyword=none&page=1&utm_source=newsletter&utm_medium=digital&utm_term=east&utm_content=cancerclassesstl&utm_campaign=st+louis+cancer+care+newsletter

    There is no cost but they do ask you to register. Hope to hear back from you. Peace and Blessings    Tom

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #11
    MJG1 said:

    To MarineE5

    Thank you so much for your enouragement.  I'm so happy you are living proof this too shall pass!!  Do you know if you were HPV negative or positive?  Also, was your cancer at the base of your tongue??  If ours is not HPV positive we face surgery through the neck, as well as chemoradiation.  If it's HPV positive we will be doing chemoradiation only with no surgery.  It's all so overwhelming and worries me so much for my husband.  Have you regained swallowing?  Also, has your speech changed much?  Thank you so much for taking the time to respond.

    To MJG1

    My cancer was Squamous Cell Carcinoma at the Base of my Tongue. I chose the option of having the Tumor (Primary site) removed with the surgery. I knew that there were possibilities of trouble speaking and the possibility of being on a PEG Tube for the rest of my life. I was fortunate to have a wonderful ENT Surgeon. I do have trouble with some words, but have learned to avoid them. I can eat orally, but avoid certain foods that can cause me to choke. Our motto here is "We have a New Normal" 

    I had the surgery thru the right side of my neck where there was what we thought 1 Lymphnode involved. After the Radical Neck Disection, the Suregeon found another one involved. Radiation was the follow up treatment. I knew I wanted the cancer out of me, period. I was willing to do whatever it took, set my mind to Battle mode.

    Yes, both of your minds are running at Warp speed at the moment, we all have been there, that is the reason many of us stay at this site to help those that are taking their first steps on this road of Head and Neck cancer. You both will get thru this. The one biggest thing we all speak about and is CivialMatt's mantra is Hydration, Hydration, and Hydration again, continue to swallow water or any fluids. Come here often with your questions as we lean on each other so you have someone to lean on.

    The Doctors and Nurses will guide you also, ask for pain Med's so your husband can stay ahead of the pain. I can honestly say I was never in pain, some discomfort "Yes" but no serious pain.

    As the Caregiver, please do not overlook your health during all of this. Caregivers are Angels with invisible Wings.

    My Best to Both of You and Everyone Here 

  • MJG1
    MJG1 Member Posts: 137 Member
    edited July 2016 #12
    tomb247 said:

    St Louis

    I am 16 months our from Stage 3 BOT/Tonsil treatment and live in the STL area. I had 30 IMRT treatments over 7 fields. 

    Just an FYI that there is a HN Cancer Support group meeting this week at the Pratt Cancer Center at Mercy in Creve Coeur.  They hold meetings once a month and this months topic is for the caregiver.

    I would be happy to share my experience with you and your husband just to give you some background information on my journey thus far. Feel free to message me and here is the link for the registration.  

          https://www.onlineregistrationcenter.com/registerlist.asp?m=4256&p=352&group=67&s=4&headers=42135&vs=6&deh=1&pp=15&keyword=none&page=1&utm_source=newsletter&utm_medium=digital&utm_term=east&utm_content=cancerclassesstl&utm_campaign=st+louis+cancer+care+newsletter

    There is no cost but they do ask you to register. Hope to hear back from you. Peace and Blessings    Tom

    St. Louis

    Hi Tom, Thank you for the connection. BOT--Base of tongue?  Thanks for letting me know about the HN Support group.  At this point I'm not ready to attend a meeting, but I imagine at some point I will be.  Where have you received treatment?  Also was yours HPV positive or negative?  thank you, Margi

  • MJG1
    MJG1 Member Posts: 137 Member
    edited July 2016 #13
    tomb247 said:

    St Louis

    I am 16 months our from Stage 3 BOT/Tonsil treatment and live in the STL area. I had 30 IMRT treatments over 7 fields. 

    Just an FYI that there is a HN Cancer Support group meeting this week at the Pratt Cancer Center at Mercy in Creve Coeur.  They hold meetings once a month and this months topic is for the caregiver.

    I would be happy to share my experience with you and your husband just to give you some background information on my journey thus far. Feel free to message me and here is the link for the registration.  

          https://www.onlineregistrationcenter.com/registerlist.asp?m=4256&p=352&group=67&s=4&headers=42135&vs=6&deh=1&pp=15&keyword=none&page=1&utm_source=newsletter&utm_medium=digital&utm_term=east&utm_content=cancerclassesstl&utm_campaign=st+louis+cancer+care+newsletter

    There is no cost but they do ask you to register. Hope to hear back from you. Peace and Blessings    Tom

    p16 AND RADIATION / CHEMO

    Hello tomb,

    My husband received news that he is P16 and we're grateful for that.  We met with the Radiation Oncologist today and we're overwelmed.  We would love to hear your experiences. where did you have your treatments?  Also, you had radiation only?  can you share your side effects?  I think we face radiation and chemo.  Thanks, MJG1

  • Mgbfoster
    Mgbfoster Member Posts: 18
    #14
    Barnes Hospital St. Louis

    I was diagnosed on or around July 21st. Stage 2 squamous cell at the BOT. It was removed via Transoral Robotic Surgery on August 5th. The doctor also removed the lymphnodes from the left side of my neck. It seems that the pain from swallowing is dimishing. I go for my first visit with the radiation oncologist tomorrow. I don't really know what to expect. Any and all advise would be helpful. Thanks!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Hi MJG1

     

    I have a totally different type of cancer so I will let others give you the help you need, but like everyone here I want to Welcome you to our family here on CSN H&N

     

    Tim

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #16
    Mgbfoster said:

    Barnes Hospital St. Louis

    I was diagnosed on or around July 21st. Stage 2 squamous cell at the BOT. It was removed via Transoral Robotic Surgery on August 5th. The doctor also removed the lymphnodes from the left side of my neck. It seems that the pain from swallowing is dimishing. I go for my first visit with the radiation oncologist tomorrow. I don't really know what to expect. Any and all advise would be helpful. Thanks!

    welcome

    Mgbfoster,

    Welcome to the H&N forum, sorry that you are here, but maybe we can fill in the blanks.  Tomorrow, if your treatment is similar to most of us, your doctor will recommend a series of radiation applications to the areas with cancer or cancer potential areas.  How much radiation you receive and how your body reacts to radiation will determine the path  you follow.  A few H&N members hit the outer limits for a lot or a little side effects, but most of us land in the middle with throat, mouth and tongue discomfort, lost sense of taste, dislike for the way food feels and a variety of sores, burns, constipation and difficulty swallowing and eating, to name a few.

    To get maximum traction you should start a new thread and introduce yourself.  Also, take a peek inside of the superthread for all the relevant cancer stuff.

    Good luck,

    Matt

  • Fritz
    Fritz Member Posts: 106
    edited August 2016 #17
    Hello and Welcome!

    I was diagnosed with Stage IVA Tonsil Caner on 3/1/16. On 4/20/16 I had surgery to remove both tonsils, part of the tongue base and parts of my soft palate. I also had a modified radical neck dissection to remove 1 cancerous lymph node and 23 others that were deemed non-cancerous. After 6 weeks of healing from surgery I began 33 rads over 7 fields and 6 Cisplatin chemo infusions which all ended on 7/15/16.  Been healing ever since.  There are many side effects with this treatment and everyone experiences different levels. 

    My suggestion is to maintain contact with members on this site as they can provide fantastic guidance as to how to minimize or even eliminate some of them.

    I hope all goes well with your upcoming journey.

    Freddie

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