Cancer Again in St. Louis

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I just found out I have SSC in the esophagus.  Doctor found it during the dilations.  THe first 11 procudes were clear.  The 12th (NOv 27) the noticed something, but it was only 12 days since the prior one (Nov 15), so it could have been it just hadn't healed yet.  Monday he took a biopsy and it came back positive.

I had toncil SSC stage 4 back in 2007.  Getting dilatied because of the radiation scar tissue.

Hope we caught it early.

But, its Christmas time and the end of the year.  It might take time to get into see someone.

My vocal cord ENT was going to refer me to an ENT that does esophagus reconstruction in Jan or Feb.  I asked him to help me get in sooner - like yestday - but I'll settle for tomorrow.

This will be hard.  I have no voice - so my husband has to do all the talking for me - unless the doctors are willing to text or email.

Anybody have any recommendations for doctors or treatment centers - or ones to stay away from - please private messge me.

I'm lost with this.

I already have the PEG tube - so that's one thing they won't need to do :)

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Well crap!!

    I'm so sorry to hear this, Lorna.....I would guess that he DID catch it early since it was suspicious less than a month ago, but clear before that.....I'm thinking very early.  Sending prayers that your Dr. can get you into the other ENT right away......I know Christmas is right around the corner, but the "hanging and waiting" are emotionally, the worst.....getting into the fight lifts spirits even if it kicks our butts.

    Hang in there, we're right at your side.

    p

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Three years ago today

    I was in the hospital in St Louis following a 14 hour surgery, done for my second SCC.  The whole thing was pretty overrwhelming.  I did fine, got to  go hom Christmas Eve day.  But I wasn't done, having another cancer 11 months later, in a different spot.  So rads started right after Xmas in 2011.  It looks like I beat it this time, as I'm rapidly approaching two full years out. 

    You  are experiencing a second primary, given how long it is from your orignal SCC.  It sounds like you prrimary is esophageal, which has some characteristics in common with throat cancer.  Your treatments are in St Louis, and there are very good services available to you there.  I forget which hospital you are attended at, Baptist?  There is likely no  reason for you to have to travel a long way for help, though it may require some other specialty be brought in to assist in your care.

    You're gonna need the standard workup, you know the drill.  Then they'll have to do treatment planning.  I'd be pretty tempted to stick it out right where you are for a bit, see what is recommended, then decide how comfortable you are with what you hear.

    Second primary.   You can beat this one too.  My best to you, I know its tough.

     

    Pat

     

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Thoughts & Prayers...

    Hang tough, stay positive and remember you've beat this before....

    John

  • lornal
    lornal Member Posts: 428
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    Three years ago today

    I was in the hospital in St Louis following a 14 hour surgery, done for my second SCC.  The whole thing was pretty overrwhelming.  I did fine, got to  go hom Christmas Eve day.  But I wasn't done, having another cancer 11 months later, in a different spot.  So rads started right after Xmas in 2011.  It looks like I beat it this time, as I'm rapidly approaching two full years out. 

    You  are experiencing a second primary, given how long it is from your orignal SCC.  It sounds like you prrimary is esophageal, which has some characteristics in common with throat cancer.  Your treatments are in St Louis, and there are very good services available to you there.  I forget which hospital you are attended at, Baptist?  There is likely no  reason for you to have to travel a long way for help, though it may require some other specialty be brought in to assist in your care.

    You're gonna need the standard workup, you know the drill.  Then they'll have to do treatment planning.  I'd be pretty tempted to stick it out right where you are for a bit, see what is recommended, then decide how comfortable you are with what you hear.

    Second primary.   You can beat this one too.  My best to you, I know its tough.

     

    Pat

     

     

    Hospitals

    I went to Mo Bap for my first one.  I have been going to Barnes for the dilations.  They have the Siteman Cancer Center there, and there are locations that are easier to get to than the main one.  But if I need surgery, the surgeon I want is at St. Louis Universiy - but he also does surgery at Mercy (St. Johns) - different hospital system - and records don't share easily across systems.  

    We live just outside the city limits in the county, so none of the hospitals are far - 10-30 minutes at the most.

    I just want to get going. I know I'll need a PET scan and CT scan - so I guess I'll get it done where ever it can be done the quickest.

    I'm worried that it might not be JUST starting - I did lose my voice about 3 months ago.  Was it the radiation scar tissue, or the new primary site.  That worries me a lot.

    The Aleve isn't working so well anymore, so I will probably be back on the pain meds by the end of the weekend.  Fortunately, I already have the PEG tube, so I can at least get some nutrition, and plenty of fluids.  I can't eat as much as I was through the tube, because it starts coming up.  Not pleasant, and not comfortable.  This just started getting bad in the last couple of days.

     

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    T & P

    Lorna,

    I sorry about what they found (and found early), but I am betting they will fix you up.

    Stay strong,

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
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    CivilMatt said:

    T & P

    Lorna,

    I sorry about what they found (and found early), but I am betting they will fix you up.

    Stay strong,

    Matt

    Lornal

    I am in the Barnes/Siteman system here in St Louis. My ENT/Surgeon was Brian Nussenbaum. If I had overs. I would have chosen St Johns/Mercy.  Doctors at Mayo recommended an ONC, Dr Atkins, at Barnes West, to administer this part of my tx. so I will stay w/Barnes for chemo.  

    God Bless,

    Candi 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    lornal, i'm so very sorry to

    lornal, i'm so very sorry to hear this.  try to remember that many of us here have had a 2nd primary or a recurrence and we've won that battle and so can you!  i hope your docs can get the ball rolling soon so you don't have long to wait and worry.  of course you will worry but waiting seems to make it much, much worse.  once tx starts you are so busy that you have less time to worry.  i'm praying that you get thru tx with few side effects and little sickness.  try to have a Merry Christmas and let us know when things get started for you.  you are in my thots and prayers.

    God bless you,

    dj

  • lornal
    lornal Member Posts: 428
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    Uggh

    I got a copy of the biopsy report.

    Invasive Keratinizing Squamous Cell Carcinoma.

    Absolutely no idea what this means.

    I have 2 surgeon appointments set up - one with the surgeon from the 2007 cancer (not until 1/8 though).  The other next Friday - I was going to see him next year about getting my esophagus reconstructed.  But, now I will see him next Friday.

    The patient care coordinator nurse emailed me and let me know they have sent the medical oncology for review - and she asked for a "rush".

    Not anything else I can do for the weekend.  Tomorrow I will start organizing my notes, doctor's names/numbers, med list, reports.  My husband has to do all the talking for me - so I need organization.

    I don't think I'll be making my end of feburary deadline at work.  Back in 2007/2008 - they ended up delaying delivery of the software a year or so because I was out.  (small software company and I do much of the work on the product line).  Hope we don't have to delay that long.

    Time for a nap Embarassed

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    lornal said:

    Uggh

    I got a copy of the biopsy report.

    Invasive Keratinizing Squamous Cell Carcinoma.

    Absolutely no idea what this means.

    I have 2 surgeon appointments set up - one with the surgeon from the 2007 cancer (not until 1/8 though).  The other next Friday - I was going to see him next year about getting my esophagus reconstructed.  But, now I will see him next Friday.

    The patient care coordinator nurse emailed me and let me know they have sent the medical oncology for review - and she asked for a "rush".

    Not anything else I can do for the weekend.  Tomorrow I will start organizing my notes, doctor's names/numbers, med list, reports.  My husband has to do all the talking for me - so I need organization.

    I don't think I'll be making my end of feburary deadline at work.  Back in 2007/2008 - they ended up delaying delivery of the software a year or so because I was out.  (small software company and I do much of the work on the product line).  Hope we don't have to delay that long.

    Time for a nap Embarassed

    The business

    will survive without you.  You have more important things to do at the moment.  Don't sweat the pathology report.  Keritanizing SCC is still just plain old SCC, no matter what other terms they put in front of it.   Nap as much as you need.  sounds like you are headed in the proper direction.

  • j4mie
    j4mie Member Posts: 218
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    Stay strong...

    As others have said...you have beat this once, you can do it again. It sounds like you caught it super early this time...Stay strong. 

    Sending prayers,

    Jamie

  • Greg53
    Greg53 Member Posts: 849
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    j4mie said:

    Stay strong...

    As others have said...you have beat this once, you can do it again. It sounds like you caught it super early this time...Stay strong. 

    Sending prayers,

    Jamie

    Mojo

    lornal

    Sending you some positive thoughts and good mojo (and a pm)!!

    My best to you (from across town)

    Greg

  • Laralyn
    Laralyn Member Posts: 532
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    lornal said:

    Uggh

    I got a copy of the biopsy report.

    Invasive Keratinizing Squamous Cell Carcinoma.

    Absolutely no idea what this means.

    I have 2 surgeon appointments set up - one with the surgeon from the 2007 cancer (not until 1/8 though).  The other next Friday - I was going to see him next year about getting my esophagus reconstructed.  But, now I will see him next Friday.

    The patient care coordinator nurse emailed me and let me know they have sent the medical oncology for review - and she asked for a "rush".

    Not anything else I can do for the weekend.  Tomorrow I will start organizing my notes, doctor's names/numbers, med list, reports.  My husband has to do all the talking for me - so I need organization.

    I don't think I'll be making my end of feburary deadline at work.  Back in 2007/2008 - they ended up delaying delivery of the software a year or so because I was out.  (small software company and I do much of the work on the product line).  Hope we don't have to delay that long.

    Time for a nap Embarassed

    So sorry to hear about this!

    So sorry to hear about this! My family is in St. Louis, and my mom went through lung cancer treatments there. I remember when I went through tonsil cancer treatments in San Francisco, my doctor was very specific about who I should go to for a second opinion because head and neck cancer is relatively rare and even some major cancer centers only see a handful of cases a year.

    My mom went to St. Luke's, but lung cancer is really common so it's probably equivalent at most major hospitals. I did some research, and her medical oncologist also practiced and led clinical trials at Barnes--which was clearly the research leader in lung cancer for St. Louis.

    So a good way to look at this might be to look at clinical trials in esophagal cancer in St. Louis, and see where they are taking place and the doctors involved. That gives you a strong clue that those doctors understand and treat it on a regular basis.

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi lornal

     

    Sorry to hear this but don’t give up, it is just a part of what we live through everyday. I too can’t talk or hear much anymore so the Wife and I are thinking about taking Sign Language; I already know the sign for being dumb. Anyway it is something we know that is coming when I will lose completely the hearing and voice. I am finally getting use to the PEG tube, it has become my best friend I take care of it and it takes care of me. We will continue to keep you in our prayers

     

    God Bless

    Tim Hondo

  • rarph123
    rarph123 Member Posts: 64
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    Three years ago today

    I was in the hospital in St Louis following a 14 hour surgery, done for my second SCC.  The whole thing was pretty overrwhelming.  I did fine, got to  go hom Christmas Eve day.  But I wasn't done, having another cancer 11 months later, in a different spot.  So rads started right after Xmas in 2011.  It looks like I beat it this time, as I'm rapidly approaching two full years out. 

    You  are experiencing a second primary, given how long it is from your orignal SCC.  It sounds like you prrimary is esophageal, which has some characteristics in common with throat cancer.  Your treatments are in St Louis, and there are very good services available to you there.  I forget which hospital you are attended at, Baptist?  There is likely no  reason for you to have to travel a long way for help, though it may require some other specialty be brought in to assist in your care.

    You're gonna need the standard workup, you know the drill.  Then they'll have to do treatment planning.  I'd be pretty tempted to stick it out right where you are for a bit, see what is recommended, then decide how comfortable you are with what you hear.

    Second primary.   You can beat this one too.  My best to you, I know its tough.

     

    Pat

     

     

    2 Yrs.& 3 Mo.

    Hi  Longtime Surviver : In 2011 had B.O.T & lung cancer--did not think I would make it this far.Been on the edge of the cliff a few times.2012 the P.E.P scan showed it came back on the neck---Wrong theyare, false positive or in thier words "Physiologic in nature " and I said to them, can you tell me what that means and they said,"Its some thing thats there but not " That was a few months of seeing other Dr's fearing the cancer had come back. Went one year of no test and my Dr. said you gota do another P.E.P scan and just like the movies the scan came back positive for right lung, same place as the first test in 2011. Rad. hot spot was final conclusion.No more test for a year, thank God!

    I post to you cause you been there twice and know how strong you have to be.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    rarph123 said:

    2 Yrs.& 3 Mo.

    Hi  Longtime Surviver : In 2011 had B.O.T & lung cancer--did not think I would make it this far.Been on the edge of the cliff a few times.2012 the P.E.P scan showed it came back on the neck---Wrong theyare, false positive or in thier words "Physiologic in nature " and I said to them, can you tell me what that means and they said,"Its some thing thats there but not " That was a few months of seeing other Dr's fearing the cancer had come back. Went one year of no test and my Dr. said you gota do another P.E.P scan and just like the movies the scan came back positive for right lung, same place as the first test in 2011. Rad. hot spot was final conclusion.No more test for a year, thank God!

    I post to you cause you been there twice and know how strong you have to be.

    Wow it is nice to hear from you

    I remember you vividly.  And I'm very glad to hear you are still doing well, as I remember it was quite an ordeal for you to endure at the end of your radiation.  I have used your recovery to illustrate the importance of time and persistence, as that's what got you through the situation you foiund yourself in then.  Please keep coming back from time to time to let us all know how things are going.

     

    best to you sir.

     

    Pat

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Hondo said:

    Hi lornal

     

    Sorry to hear this but don’t give up, it is just a part of what we live through everyday. I too can’t talk or hear much anymore so the Wife and I are thinking about taking Sign Language; I already know the sign for being dumb. Anyway it is something we know that is coming when I will lose completely the hearing and voice. I am finally getting use to the PEG tube, it has become my best friend I take care of it and it takes care of me. We will continue to keep you in our prayers

     

    God Bless

    Tim Hondo

    TIM

    Tim,

    Here;s a little fact about me that you probably didn't know... I finished my four year degree Bachelor of Science in Information Technology at University of South Florida in 2006, after earning my AA degree in 1980, LOL.

    Anyways, for my language requirement at USF, I took the required hours in ASL American Sign Language. Though I don't really use it, I do still remember some of the signs, and most of the alphabet for finger spelling...

    So to get you started;

    T

    JOHN

  • lornal
    lornal Member Posts: 428
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    Hondo said:

    Hi lornal

     

    Sorry to hear this but don’t give up, it is just a part of what we live through everyday. I too can’t talk or hear much anymore so the Wife and I are thinking about taking Sign Language; I already know the sign for being dumb. Anyway it is something we know that is coming when I will lose completely the hearing and voice. I am finally getting use to the PEG tube, it has become my best friend I take care of it and it takes care of me. We will continue to keep you in our prayers

     

    God Bless

    Tim Hondo

    Sign Language

    If you find a book or something online - let me know.  My husband and I want to know - so at least we can talk amonst ourselves.

    I already have on IP-RELAY service for when I need to make phone calls since I can't talk.

    I wonder - I'm guessing I'll have chemo again, and it looks like the infamous cisplatin is used for this kind of cancer as well.

    So, if cisplatin took half my hearing the first time - is it going to the second half the second time.

     

  • hwt
    hwt Member Posts: 2,328 Member
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    lornal said:

    Sign Language

    If you find a book or something online - let me know.  My husband and I want to know - so at least we can talk amonst ourselves.

    I already have on IP-RELAY service for when I need to make phone calls since I can't talk.

    I wonder - I'm guessing I'll have chemo again, and it looks like the infamous cisplatin is used for this kind of cancer as well.

    So, if cisplatin took half my hearing the first time - is it going to the second half the second time.

     

    Cisplatin

    Hoping you won't need more chemo. My first tx was Cisplatin. I will be getting a concoction this time of 3 traditional drugs (includes cisplatin) or there is also something new out there..I believe it begins with a "c". They are finding it effective without as many side effects.  Doc said less than 2/3 of patients are able to finish cisplatin. I did not finish my first go round. If I get more info on new tx, I will forward.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    hwt said:

    Cisplatin

    Hoping you won't need more chemo. My first tx was Cisplatin. I will be getting a concoction this time of 3 traditional drugs (includes cisplatin) or there is also something new out there..I believe it begins with a "c". They are finding it effective without as many side effects.  Doc said less than 2/3 of patients are able to finish cisplatin. I did not finish my first go round. If I get more info on new tx, I will forward.

    TPF

    That was my main cocktail... Cisplatin, Taxotere and 5FU for three major doses during nine weeks. Then an additional seven week regime' of concurrent weekly Carboplatin and daily radiation..

    Carboplatin might be the lower dose more tolerant chemo you mention.

    Lorna, in my small town, and many... There are public places that the deaf meet monthly and more that you can interact with, and many local colleges and I'm sure some free sources on learning ASL.

    The pubic place in my town is actually the food court at the loacal mall.. First Tuesday evening of every month.

    It was pretty cool actually as a lot of the deaf have children that aren't deaf and are more than willing to communicate both speaking and ASL.

    It was really eye opening and refreshing, the mixture of cultures and economic backgrounds of people, white, blacks, hispanic, old and young...all interacting and communicating, socializing together.

    None of the crap with mixed crowds that you see in so many societies today.

    John