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TxN0M0 PET Scan Report

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Don received a copy of the PET scan report today and it said the stage appears to be TxN0M0. Having EUS on Friday - we are thinking the 'x' will be filled in at that time. Pretty sure the N0M0 is good.

Am I correct in thinking that the 'x' number will be determined by the EUS?

Thank you all so much,
Judy

P.S. Liquid and soft food diet appears to include Budlight - LOL - gotta give him break sometime right? Treatment has not started yet - so I think one or two won't hurt.

Freida
Posts: 191
Joined: Nov 2011

Judy
based on my admittedly extremely limited knowledge, the N0M0 part does sound like good news. No activity in the lymph nodes and no metastasis elsewhere - I am so happy for you. When is the EUS? (Bill is supposed to have one next week, but they have not told us when.)

Freida

jss2011
Posts: 137
Joined: Sep 2011

Yes Judy, that is wonderful news! Sounds like stage I or stage II since N is 0, so you caught it early.

Julie

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Julie:

I am so hoping it was caught early - the only thing I wonder about is that the tumor is at least 8 cm (i.e.; 3.14") and that doesn't sound too small to me. Also the GE junction could be involved - again, assuming the EUS will complete this picture?

Thanks for replying - we are so praying that this was caught early.

Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Don's EUS will done this Friday. I was thinking the same as you. We do know that the tumor is 8 cm - which to me doesn't sound small, but the N0M0 sounds better - I don't know if the EUS will change either of those, but I don't think so?

How are you and Bill doing down there? How is Bill holding up? How are you holding up?

Hugs
Judy

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Judy,

It sounds like you got some good news from the PET scan. You are correct the endoscopic ultrasound (EUS) will validate the nodal involvement (N) portion of the staging; and confirm the tumor penetration (T) portion of the staging. The nice things about and endoscopic exam is that, Don will sleep through the procedure, and you typically get the results right after the test is completed.

Don will be given a mild sedative prior to the procedure and he may be a bit groggy after; so you will have to take notes for him when the doctor comes in to review the findings.

Here is a description of the staging for EC:

Esophageal Cancer Staging

Here is an overview of the EUS procedure:

Endoscopic UltraSound Procedure

I will be praying that Don gets good news.

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
Two year survivor

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

jss2011
Posts: 137
Joined: Sep 2011

Hi Judy,
yes 8 cm sounds large, but the tumor may be "long" as my hubby's surgeon found. He is T2N2M0, which makes him Stage III. After 4 rounds of chemo it is now only at the junction.
You guys are alot better having no lymph involvement.

Julie

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Sherri

You are right - it seems to be taking a long time - it didn't help at all that the diagnosis was given on Monday of Thanksgiving week - we basically lost that whole week and discontinued the services of the gastroentrologist. But last week, I contacted our primary care doctor and he and his staff spent hours on the phone setting up appointments and obtaining referrals for all of the specialists. This week has been one test after another - tomorrow is the EUS which will likely be the final test to stage this.

When you are given the EC diagnosis and investigate what that it is - you know that time is of the essence so it seems like everything is in slow motion. The doctors are wonderful, and their staff can really make things happen - we are fortunate to have one of the best, truly caring primary doctors in our area.

I can tell you've been there, done that and I appreciate your concern. We will let everyone know, of course, what the stage is as soon as we can.

Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi William

Thank you and Loretta - your words of wisdom, sound advice and experience are so comforting. I know I can count on each of you and thank you very much.

We are particularly pleased with the M0, and hopefully the N0 will stay the same, the Tx is worrisome, but in less than 24 hrs. we will know. The unknown is always the hardest. He passed the stress test today just fine - so he does have clearance if and when surgery can be done and we are very hopeful and encouraged at this point.

RE: stick around to give hope and guidance to others - you can count on it - this site has been a true Godsend to us and it would be helpful to others to have a place (thanks to you) that they can come to for knowledge, references, advice and experience. I certainly appreciate all of you pioneers for continuing to help us all on here.

Thank you again for your continued prayers for all of us - you are definately in my prayers every night when I thank God for what He continues to provide us.

Hope all went well today for you and Loretta - I know you had a very busy day.

Hugs,
Judy

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Hi Judy,
Wishing you both the best tomorrow. Keith was a T2 N0 M0 and as you know he did chemo/rads/surgery. I just want you to know that in terms of the NCI guidelines, T2 in some academic circles is considered a "tweener" meaning some might not recommend treatment before surgery like they do in the T1 stage. So, I just wanted you to know that so you can ask questions how they decide who does chemo rads at this stage. I know with Keith and his age 52 they were maximally aggressive. I haven't heard of anyone who did not get treatment at stage 2, but I no it is definitely discussed. Will be thinking of you both, hope you get some rest,
Cora

p.s. any chance you two ride Harley's ? I just noticed your gear and I live in Wisconsin, Harley land you know! Also looks like you are in Utah somewhere in that gorgeous photo.. Curious to know more..

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Cora:

Yes we do ride - our profile picture was taken in Valley of Fire in Las Vegas (which Chantal and Lee were married there!) Don rides a dyna wideglide and I ride a Sportster 883.

I have never been to Milwaukee but love to go there sometime and tour around.

Today, Don was staged via EUS - Stage IIIa T3N1M0 - so battle gear ready - going in Tuesday to get the suggested plan of action. Hubby is so tired right now, but we'll be talking over the weekend - I'd like to get a 'feel' for what he's thinking.

Thank you so much for your comforting words and thoughts and prayers.

Judy

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

Judy,

I am SO glad for you that Don is a surgery candidate. Get going on the treatments and get into surgery. William is a gem when it comes to evaluating surgeons, so let him know your location and cancer center and he will help you make the right choice.

Congratulations! I'm so glad for you both!

Love & Hugs!

Terry

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

I noticed your leathers in that great picture and was wondering what you ride. I ride an ElectraGlide. Last summer I took the month of June off and rode solo cross-country - shipped the bike to Seattle and rode home to Cape Cod. It was an unbelievable time, and 1 month to the day after I got home I was diagnosed with EC. Now I'm 11 weeks post-MIE and 1 of the things I'm looking forward to at my follow-up appointment with my surgeon in January is permission to ride again. It's winter, but I'm finding that each thing I am able to do from my old life gives me a big emotional boost. I'm feeling generally really good, but I do still need those boosts from time to time.

Recovery is challenging, but definitely worth it. Just keep looking forward to the day that damn demon has been removed from your body and you can start getting better...and start riding again!

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I bet that was an awesome trip. You must have had a blast. My husband has been riding most of his life - he rides a dyna wideglide and I ride an 883 sportster. We too are looking forward to riding again - winter here so bikes are tucked away. Usually Don spends the winter months, polishing, tweeking, polishing and in general just dinking around in the barn with the bikes. We have two great nephews that Don has bought them each dirt bikes (and one for himself of course!) We love American Iron magazine and he'll spend the winter reading those from cover to cover.

Thank you for the encouragement on the recovery - we haven't started that yet, but I'm getting a pretty clear picture on what to expect and read through all the posts on here daily. What a great site and we were very lucky to have all of you.

Hopefully we can our knees in the breeze next summer and hook on with you on some ride.

Live to Ride!
Judy

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

Judy,

Hopes and prayers are for a "good" T! I recall how miserable the waiting was between tests and it seemed even longer before treatment began.

Please update us as soon as you both can "breath" again after tomorrow's test. I say that because each round of testing took our breath away. It seems like everything with EC takes your breath - for a minute or two anyway.

Love & Hugs!

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Terry

Looks like we are in the same boat - T3N1M0 - Don had the EUS today - we are just getting home from Ann Arbor, MI (Univ. of Mich).

Lacing up my boxing gloves, got my big girl panties on - bringing our A game to this one. We will see another doctor on Tuesday who will give us his idea of a game plan - it better be a good one!

Thank you so much for the Love & Hugs and prayers and chatting with me.

Appreciate all of you so much,

Judy

Freida
Posts: 191
Joined: Nov 2011

Hi Judy
So the EUS can show lymph node where the PET does not? I had not realized that. (Or maybe I had and am so tired I have forgotten - why is waiting around for hours and hours and hours so tiring?). Bill will have his EUS on tuesday.

I'm sorry to hear that the N0 became an N1, but I'm so glad you are an early enough stage for the possibility of surgery. Keep us up to date with the treatment plan.

Did Don get PICC line yes. Bill had one put in tuesday. I had to go to 2 classes to learn how to flush the 2 lines, change the caps, and change the dressings using sterile techniques. I imagine you will have to do the same, so i thought I would let you know it is not as intimidating as it first appears. The most difficult part was getting the darn cloves. Today I passed my test so we were given 2 very large bags full of supplies. I was quite irritated to discover that insurance does not cover the heparin. It's not horrendously expensive, but it seems ridiculous to me.

Good luck with your consultations next week.
Hugs
Freida

Freida
Posts: 191
Joined: Nov 2011

Sorry if that seems a bit rambly - we have gone to MDA 4 days in a row, yesterday we were there from 8 a.m. to 9.40 p.m. then had to get up at 5.30 to go back this morning and were there till 4.30. We are both kind of punch drunk right now.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Judy, so relieved that you have the answers and that you can get on with treatment now. And, please don't fear the delays.. they truly are not going to many ANY difference other than they make us stressed out. I remember our doctors saying how important it is to get everything just right prior to treatment initiation. So now the radiation plan can take about a week so be prepared for that. Frieda, what I learned is that 30% chance of PET scan's/CT's not showing a node and then sometimes it gets revealed in the EUS.

Peace and comfort to all of you,
Cora

Freida
Posts: 191
Joined: Nov 2011

Than you Cora. Bill's PET scan showed 1 node involved - I guess I am guilty of some magical thinking and was hoping the EUS would say the PET was wrong and there is no lymph node involvement .

Judy - there are no "cloves " involved with the PICC line and sterile field procedure. My difficulty was with getting "Gloves" on.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Don's PET scan mentioned the possibilty of one lymph node involvement which was also seen on the CT scan. EUS did confirm that and so they changed the N0 to N1. I think that is probably pretty standard from what I can gather. I'm not too awfully concerned with the N number - the M number is the one I keep an eye on.

Just now in the middle of this posting I was thinking - man I'd like to grab a bottle of wine, cup of coffee (with a big shot of Bailey's!) and sit down with everyone on this site in one big room and just talk and listen. Everyone has so much to offer.

I know you are keeping great notes - keep em handy - I'll need to check back with you on some things for sure.

Keep your head up and smile - God has given you one of His special tasks - and we can be sure He only chooses the very capable for this task!

Love and hugs,
Judy

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

Hello Judy :)

I've just finished my morning pot of coffee with Bailey's. That's my weekend treat for myself.

Just had to comment.....

Love & Hugs!

Terry

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

I think of you everyday and hope all is going well with you and your family!
Love your quote- "Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain!"
Sooooooooooo True!
John's first visit to Moffitt there was a Thunderstorm, lighting hit a transformer a few feet from the road we were driving on, the traffic lights went out, street were flooding and we were only a few miles from home. I was thinking to myself if this was any other appointment I would turn around and go home. We made it to Moffitt safe and sound and that was the day we meet Dr. Meredith. He explained the MIE procedure and told us John was a good candidate and the rest the say is history.
The reason I made the appointment at Moffitt is because William and Loretta explained (on-line and on phone) to me the difference between the Ivor -Lewis and MIE with an experienced surgeon that performs surgery frequently.
Today it is cloudy in “sunny” Fl. but I am smiling while I clean up around the house start to decorate the Christmas Tree (it takes me forever, lol) and John just left for the gym (I’m on my way soon too)! Life is good 13 weeks post surgery!
Cora-Love the rainbow too!
Love to All
Erica
Wife of John
Diagnosis-T-3, N-1, M-0-- 5-17-11
Chemo/Radiation-completed --7-11-11
MIE surgery with robotics-- 9-9-11
29 lymph nodes & tumor-cancer free

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Cora - thank you for that heads up on radiation plan taking about a week. I just love you pioneers. You know exactly what we are going through because you went through it yourself and giving us a heads up certainly helps us out. I would have expected Don to be getting something next week already, but we don't see the doc until Tuesday - so I will do my best to be patient (God must have run out of that one before I came along - maybe I have some other super virtue since I didn't get the patient one! LOL)

Hey Frieda - you have been on my mind and I wanted to pick up the phone and call you first yesterday - but was too afraid that you were either resting or in appointments. So glad to hear from you. What a week you all have been through. When do you go home - do you know yet?

Love and hugs,
Judy

Freida
Posts: 191
Joined: Nov 2011

Hi Judy
No, we don't know when we are going home yet. His EUS is scheduled for tuesday. The MDA one is so backed up that it would be 3-4 weeks before they could do it there, so they scheduled an appointment for us in clearlake at a center there. Have to go there monday for pre work and paperwork (different hospital) and then tuesday for the EUS. Then we will see the oncologist after that for results and a treatment plan. He had talked about possible starting chemo next week, depending on the test results and if they are still going to do the 2 month chemo followed by 6 week chemo/radiation plan. He had a 5+ hour stress test with nuclear nuclear cardiac (kind of a chemically induced stress test). So he was radioactive and was told not to try and fly for the second time in 3 weeks - if he didn't already have cancer I'd be worried about him developing it!

We have been at MDA 4 days in a row. Thursday we were there from 8 a.m. to nearly 10p.m. then had to be back by 8 friday morning and left about 4. I was pretty spacey yesterday. One piece of advice that may seem a bit silly - grab some packs of something none sugary to carry with you to snack on while waiting around. I think my spaciness yesterday was from a combination of tiredness and eating too much rubbish. When we finally got to eat actual food yesterday, I felt so much better.

My legs hurt from all the breaking I am doing in the cray Houston traffic - and I'm not even driving.

Hugs
Freida

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

So happy you like that rainbow and I so love those inspirational quotes. I saw that rainbow right out my back door, looking to the east at my neighbors horse farm. We live in an area full of hobby and working farms.
I decided to put it on there because it reminds me to be hopeful for continued miracles for each and everyone of us and grateful for this group of kind and smart people. So, that reminds me of my question that is completely rhetorical: Why does EC go after so many good people?"

Cora

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