CSN Login
Members Online: 3

Now stage IV A

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

I went in today for the full body PET/CT scan that my surgeon ordered as a follow up to a suspicious swollen / lobulated node found on my second (MIE 9 months out) follow up scan. The only thing that lit up was the node of concern so it is extremely unlikely that it was a false positive. I’m scheduled for a biopsy this coming Wednesday just for confirmation. The location of the node is considered a distant metastasis and is staged at IV A. To be honest I don’t think my wife or my two children in college have a clue of what is about to happen. Here we go.
Joel

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I'm so sorry to hear this, Joel. I know we all want nothing more than multiple NED reports following a surgery.

Best wishes for a negative biopsy! Prayers are headed your way!

Terry
Wife of Nick,Stage 3

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Joel, please keep us posted on your biopsy. I guess I can only say, take everything one day at a time and try not to get too caught up in the what-if's. That's why they do a biopsy; the PET scans aren't always accurate.
Wishing you a peaceful couple of days,
Jo-Ann

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Joel --

I'm sorry to hear your news and will pray that it really is a false positive, no matter how unlikely. It's so disheartening when EC comes back. It happened to my husband as well, 10 months after THE. We've been battling ever since.

Best of luck to you!

Mary

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Joel, So sorry for the results from the scan. Will be praying for a negative biopsy.
Sandra

Matman
Posts: 1
Joined: Aug 2011

Hello Joel C.,
Ran across a few of your postings , it's amazing that you and I resemble each other very closely in appearance , I having about 20 years lead on you .

I can only hope that everything will change for you , for the better.
I'll pray for you ( I already have) asking God to allow you to be cured .

Best,
Frank
Chicago

mrsbotch
Posts: 377
Joined: Oct 2010

Dear Joel C.

My family knows well what you are going thru. Vince's Ec came back too. This is a scary time and you and your family need a lot of faith and a lot of strength to get you thru this.

I will be thinking and praying for you

Barbara

paul61's picture
paul61
Posts: 1116
Joined: Apr 2010

Joel,

All of us that have had EC live with the daily fear of recurrence. Every new pain; days when we don't feel well, and the "suspicious" test results. I am sorry you have to deal with this now.

All we can do is take one day at a time and tell ourselves to treasure and value each day we have with the people we love. We can't control tomorrows outcome we only has the present moment in time.

I will be praying that the biopsy comes back with something other than EC.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

I know it is bad to have false hope but my drs don't do Pet scans because of so many false positives. My original one lit up all over but the tumor didn't. So just so hoping that the node has another reason to light up. But I would certainly not give up hope even if it is positive. Saying that, I am also sad that you are having this happen as Paul stated above, we all live with the fear of a bad scan, like waiting for the other shoe to drop. My thoughts and prayers are with you and your family. Please keep us updated on what is going on with you. take care,
Donna70

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

Joel,

Here's hoping the node is not positive. I just had my post CT and my surgeon said it might be carcinmatosis (Medical term for "Cancer Gone Wild" in the abdomen) so he ordered a PET which lit up like a billboard in my abdominal area. His nurse called the following day and said that the doc didn't think it was carcinmatosis and wants to proceed with surgery. One caveat is there's a enlarged lymph node near my left clavicle that he see's as suspicious so I'll be doing a biopsy on Monday. It didn't light up on the PET. Hopefully it's negative, otherwise I'll go from stage IIA to IVA and surgery won't be an option. From reading the posts here I wouldn't take a PET result as gospel. Again, I pray you'll get the "All Clear".

One day at a time brother.

Michael Daniels T3N0M0 (Until told otherwise)
Brandon, FL

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Will be keeping you Joel and Michael in my prayers this week.

Michael (hopper52) you said the doctor didn't 'think' it was carcinmatosis and wants to proceed with the surgery. Shouldn't he know 'for sure' it is not carcinmatosis before he would do a surgery?
I've always heard that if there is cancer hidden that once you have done surgery it can spread it and make things worse.
Perhaps once they do the biopsy this will tell you if surgery is for the best or not.
I'm sure you have a very good doctor who should know what he is talking about.
My brother's oncologist suggested my brother go for surgery and sent him to a surgeon.
My brother went and they scheduled him for the surgery but after much prayer and finding out this surgeon was not even qualified for this type of surgery my brother opted out.
We know if he would have proceeded he would not have been here with us today.
Not trying to discourage, but just a word of caution.
Just what did light up in your abdomen area like a billboard? Did they ever say?
Please keep us updated.
Praying for the best!

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Thank you for all the kind posts, you can’t possibly know how much it means to me. As many have mentioned there is always a chance the PET is not accurate. That is the hope that Tammy and I are holding on to. If the biopsy is positive I have a feeling we’ll be presented with making a decision between palliative chemo or just keeping an eye on it and pain meds as needed. I know there is no right or wrong choice in this situation. Chemosmoker has opted for no treatment and meds as needed and I see a lot of value in picking that path. I see others that fight stage IV with chemo as long as they can and in some cases it may not have been the best choice in regard to quality of life. At this point I’m overwhelmed, two weeks ago all was well and now this. I know my wife will push for chemo and any chance of hope she can find but don’t believe she is fully aware of just how much of a monster this disease is.
I’m praying for the best for all my friends on the EC board and I’m very grateful to have you to talk with. Michael (hopper52) good luck with your biopsy today and please lets us know how things went. I’ll have the same procedure on Wednesday so I’d be curious to know how you feel after the test.

Thanks again,
Joel

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Joel,
Sounds like another decision time is upon you. I am blessed with the fact that my wife has remained totally neutral (Just like HER2 be neutral!-for those of you that get the joke!) so as of today, I still have NO earthly idea if she thinks I SHOULD have taken chemo or if she thinks I am following the right path. I know it has not been easy for her to remain out of the decisions like this, and although I was upset that WE weren't making the decisions early on, I NOW understand what a gift she has given me.
I cannot possibly ever feel that she MADE me do chemo or not do chemo, or any other procedure.
When we started our journey (and it is still very much OUR journey despite her refusal to help me with these types of decisions) I was originally offered 9 rounds of chemo, surgery, then 9 more rounds of chemo and they were 100% confident I would leave and never need to come back after that! That QUICKLY changed after they had the PET and CT and Long Needle Aspirated Biopsies done. The Thoracic surgeon didn't even want to SEE me or talk after the pathology was in and it was no longer clinical staging.
As for the procedure (The LNA Biopsy) you are both going in for, (other than an unusual complication that I doubt you will have to contend with as I learned I am non-responsive to Fyntanl; it has absolutely NO effect on me, like Morphine on my father) it is no big deal. They sedate you and when you wake up, there is almost NO soreness. My back was sensitive to touch right at the areas where they put the needle in, but otherwise I was perfectly fine, felt the same as before I went in for it. It takes a lot longer than a scope or standard CT, as they have to run you in and out of the CT scanner again and again and keep aiming. My tumor was directly in front of at least one of several nodes they wanted to biopsy, so they had to get a specialist who was confident enough to get to them without contaminating the sample by touching the tumor (happened the 1st try weeks before). So don't fret. It's not a painful or awful test at all. You DO get a full 20% dose of radiation that a nuclear power plant worker gets in a YEAR! PS-ALL my nodes were positive, all over. Bummer.
Hope this helps. Good luck with the decisions. Make you OWN so you don't have any regrets later down the road. I DON'T have any. And I just ate a grilled cheese sandwich so I am again grateful for being this 'okay' at stage IVb. VERY grateful. Man upstairs has plans for me.
Peace,
-Eric

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

Joel,

Had my biopsy done today. They said it'll be 3-5 days for the results (more waiting). The procedure itself was a piece of cake.....a little lidocaine and then the needle. Whole procedure took about 25 minutes and it was off to the cafe for biscuits and gravy. The node itself was 1 1/2 cm when she measured it with the ultrasound so it wasn't that big. She also had my PET scan displayed on another terminal and it was lit up but was very faint, so I'm praying for the best news possible. Keeping you in my prayers also, brother.

Michael Daniels
Brandon, FL

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

I received my biopsy results and they confirm I have recurrence. The right paratracheal lymph node tested positive for malignant cells, this node is considered distant metastases. I have a meeting with my local oncologist tomorrow and a meeting with an oncologist at Dana Farber in Boston on 9/27. At this point I really don’t see the value in having my body beat down even further with additional chemo that won’t likely change the inevitable. I’ll keep an open mind and see what the doctors have to say and then make a decision. Thank you for all the support I appreciate it.

We’ll see what happens,
Joel

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Joel,

I am so sorry you did not get the results you were hoping for. I wish you the best with your meetings with the oncologists, they will know best the options that are available.

Again sorry to hear this news,

Niki

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

I am so sorry Joel that it is a recurrence. Not what any of us wanted for you. I hope the drs have some good advice and plans. My prayers are with you and your family. many hugs from afar,
Donna70

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I am so very sorry to hear your news. Of course we were all hoping for a different outcome for you. You are right, it is a mighty tough decision to make. Chemo is a nasty, nasty beast, especially if you are already weakened from disease, dehydration and improper eating. Lee and I debated the pros and cons for months, and it was certainly not an easy decision, to quit chemo. For us though, I think we made the right choice. But, as you said, there is no right or wrong choice, there is no magical answer or crystal ball to help guide us. I hope you are able to choose the best decision for YOU, not necessarily for your family or friends. I tried very hard to learn from Eric's wife Michelle, and support Lee in HIS choice, and not try to make it MY choice.
Be well Joel,
Chantal
wife of Lee, stage ivb

paul61's picture
paul61
Posts: 1116
Joined: Apr 2010

Joel,

I was really hoping and praying your results would not be a recurrence. I know it must be very depressing to hear. I, like you, am not sure what the next steps would be if I had a recurrence.

But I would like to share with you a post from a gentleman named John Thomas who has had two recurrences and is currently NED. Here is his post.

Subject: Post Op chemo

From: jthomas4668@CHARTER.NET

Reply-To: Esophageal Cancers Discussion List

Date: Mon, 12 Sep 2011 12:25:48 -0400

I had my first chem, radiation and surgery in 2006, no post op chem, I
was stage 3, The cancer was back in October of 2008. I had more chem and
surgery, no post op chem. The cancer was back in December of 2010, I had
surgery to remove 1 lymph node, and chem and Radiation. In hind sight,
maybe post op chem may have been the thing to do. With the first and
second surgeries, at 2 different Hospitals, The Doctors said the margins
were clear and the post op report came back clear, so there did not want
to put me through more chem. John

Oh, I am a five year survivor this month!

As you can see John is a 5 year survivor. His last recurrence was in a lymph node in his neck. After surgery to remove the affected node, chemotherapy, and radiation therapy his last scan was clear. John is a great guy and I am sure he would be happy to correspond with you. His email is
jthomas4668@CHARTER.NET.

I know you are probably trying to decide what is next. I think it would be valuable to get John's input.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

HI Paul,
Is this from the ACOR listserve? I was so thankful when I stumbled upon the service. It gives me hope to read the emails each night. There are a number of long term survivors, a couple folks living with reoccurance, and even a fellow who is 6yrs NED from stage 4B. I was starting to lose hope there for awhile until I found ACOR. I don't hear anyone mention it on this board. I think it would give some people hope who may be struggling right now. Thanks for sharing this with Joel.

Niki
Wife to Jeff T2N1M0
Ivor Lewis 9/6/11

paul61's picture
paul61
Posts: 1116
Joined: Apr 2010

Niki,

Yes it is from the Association of Cancer Online Resources (ACOR) http://listserv.acor.org/,

As you mentioned there are a number of long term survivors of Stage 4B and many who have survived recurrence. They also have a bi-weekly chat line for EC survivors and caregivers on Wednesday and Sunday nights. John Thomas, the gentleman who's post I copied; is frequently on the chat sessions.

So glad to hear things are going well with Jeff. As another IL patient I know what the recovery process is like.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

Joel, you can read my profile for my history, but bottom line is, I had a recurrence and elected to take Xeloda as a single agent. All the clavicular and unguinal nodes disappeared after the first round of treatment, with very little in the way of side effects. YOu might get similar results.

unfortunately for me, I have some retroperitoneal nodes and possible metastasis to the adrenal gland which have been a little more persistent, so I'm continuing chemo, now going on my third round, which is having an adverse affect on my quality of life, but nothing like fullblown chemo and radiation did last year, and I'm dealing with it.

Lu

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Joel,

I am so sorry to hear the results of the biopsy. Just to remind you - in case you haven't already had the tumor tested for the HER2 gene you should request that test. Depending on the results it might give you another treatment option.

You will be in my thoughts and prayers as you consult with your doctors and family about the next stage of your journey.

Hugs,
Cindy

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Joel,
I am sorry to have just read this follow up and that yor biopsies came back positive. What an oxymoron to use the word 'positive' for such a thing anyway.

We are all here for you, no matter WHAT you decide is the right way to proceed for your care.

I support you either way. I will be praying for good options for you on 9/27 and until then as well.

Hang in there, as there is a LOT of good living left to do still!

With all of our love,

-Eric and Michelle
Stage IVb and chemo-free

json_2011
Posts: 110
Joined: Jul 2011

Prayers your way Joel. Let us know.

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Thank you very much for each and every reply. I will take each suggestion under advisement. Cindy, per your suggestion I’ve been researching HER2 and will most definitely run it by my oncologist at Dana-Farber in Boston.

Today I received a call from the surgeon that did my MIE as well as the biopsy on the metastatic node. He feels there’s no value in just removing the node based on the fact it is distant and there is almost certainly microscopic disease in other locations. He recommended working with my oncologists on a systemic approach. I met with my local oncologist and he recommended treating with palliative chemo when it becomes necessary. He does not want to start the chemo now because I still feel pretty good and at this point chemo would not improve my quality of life. When the disease progresses to the point that it’s becoming a problem then we would start chemo as a palliative treatment to the symptoms. He also encouraged me to meet with the experts at Dana Farber to see if they are aware of any curative options. My appointment at Dana Farber is on 9/27.

Thanks again,
Joel

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Joel, you'll get the best care in the world at Dana Farber. Our onco is affiliated with them; Steve was tested right from the get-go for the HER-2 gene, although he was negative.
You will have options; perhaps you can go on their website and do some research before you go on 9/27. Wishing you all the best,
Jo-Ann

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Joel, I'm very sorry to hear your most recent news. I think it is very wise that you are getting multiple opinions and finding out what all your options are and the pros and cons of each before making any decisions. You and your family will certainly be in my thoughts and prayers.

Also, I definitely agree with Paul and Nikki's comments on the ACOR forum. I discovered them fairly early on in my husband's beginning fight with Stage IV EC in July of this year. In addition to the one Paul mentioned, there are numerous Stage IV's who have never had surgery and are multiple year survivors. One was diagnosed in 2004 with liver mets, had treatment, was clear, had recurrence in 2006, again treated and has been NED since. Another was diagnosed in 2005 with mets in larynx and groin lymph nodes. Was treated, OK, monster recurrence in 2007, treated again and NED since.
It wasn't easy, certainly, and I'm sure not everyone would make the choices they did. However, knowing there are beginning to be some success stories with extended life of good quality with a stage IV diagnosis has done wonders for my perception of hope and possibilities and makes the "one day at a time" easier.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network