Cancer Again in St. Louis

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

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

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 

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

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

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.

longtermsurvivor said:

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

 

 

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.

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,

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;

JOHN

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.

 

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.