Not great, not terrible

NikiMo

Hi friends,

Jeff had his PET/CT yesterday and we got his results today. The nurse practitioner came into the room first and had not reviewed the scan yet, she basically read verbatim the report to us. She said the scan shows activity in the mid to distal esophagus (which we knew, that is where the tumor is). The she said there are two new tracheal lymph nodes, at which point I became extremely upset. I asked a few questions about where they were located and what this means for us now, she said let me get the doctor (oncologist) and let him read the report. So we sat there and waited and I got even more upset, once I start it is hard for me to stop...but, I have been relatively positive and strong up until this point. The doctor came in and said what are you so upset about?? He said the nodes are the two same suspicious nodes that we saw on the first CT (but didn't light up during the first PET). He said that the amount of glucose the nodes took up is very low almost borderline for what they consider malignancy. He also said that they usually wait 4 weeks, we had our scan done at 3 weeks, surgeons orders.

So I guess this is a waiting game, we meet with the surgeon on August 24th. Our oncologist is certain that Jeff can have the surgery because the nodes are in the same region as the tumor. I feel silly now for getting so upset at the doctor's office, but I really thought they were telling me the cancer had spread to distant nodes.

I suppose I should have known that the PET would light up where the cancer had been found before.

Niki
Wife to Jeff T2N1M0

TerryV

Sigh or Cry?
Oh Niki!

I so understand your stress and worry and fears....

I would be the same basket case as you if I heard something I thought was a new issue. Glad the oncologist was able to reassure you that it was the original nodes that were lit up. Fingers, toes & eyes crossed for you that all is well and a surgery date gets set soon. I'm ready for your Jeff to begin his "Junior" class status!

Terry
wife of Nick, Stage 3

Laura23

Sounds good to me
Hi Niki-

I would take this as good news!

I am beginning to believe that reading a PET scan is more of an art than a science. Inflammation can show up on the PET scan as well. It only measures activity that is above baseline. So, this could mean any number of things. And with the amount of radiation our guys got, their bodies are doing their best to heal. And that means inflammation.

Focus on getting him ready for surgery. Eat, exercise and enjoy each other and the time you have together! And know that we are praying and thinking of you.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

NikiMo

Laura23 said:

Sounds good to me
Hi Niki-

I would take this as good news!

I am beginning to believe that reading a PET scan is more of an art than a science. Inflammation can show up on the PET scan as well. It only measures activity that is above baseline. So, this could mean any number of things. And with the amount of radiation our guys got, their bodies are doing their best to heal. And that means inflammation.

Focus on getting him ready for surgery. Eat, exercise and enjoy each other and the time you have together! And know that we are praying and thinking of you.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

I needed that
Thanks Laura,

I need a little glass half full right now. This is basically what the oncologist said to us, but I was so worked up I couldn't even think straight. I asked Jeff what he felt after we left the office. He said "I think you are a weenie, and I am just happy it didn't go to any organs". I know I need to look at this as a blessing that we should be able to have surgery. I think what is getting to me is that these nodes have been hanging over our heads, we have never known whether they are truly cancerous or not. I told myself going in that the PET would still light up because of the radiation, but somewhere the rational was not getting through to the scared wife. I am a weenie..haha!!

I just want to get the 24th behind us so that we know surgery is a go.

Thanks again for providing some perspective

Niki

NikiMo

TerryV said:

Sigh or Cry?
Oh Niki!

I so understand your stress and worry and fears....

I would be the same basket case as you if I heard something I thought was a new issue. Glad the oncologist was able to reassure you that it was the original nodes that were lit up. Fingers, toes & eyes crossed for you that all is well and a surgery date gets set soon. I'm ready for your Jeff to begin his "Junior" class status!

Terry
wife of Nick, Stage 3

Thanks
I really did think I was hearing that the cancer had spread to a new lymph node area, not realizing in my panic that the trachea is right behind the esophagus. In my defense the nurse did say "I am sorry for having to give you this bad news", I think she forgot that Jeff had two suspicious nodes since diagnosis. I am somewhat annoyed that the nurse didn't go get the doctor to begin with. There are certain things I think only doctor's should be able to do for patients, and one of those is read tests and give results. He was actually somewhat annoyed when he came in the room. I said point blank "if I am confused and emotional it is because of what I was just told by the nurse, I didn't interpret anything on my own." I look forward to speaking with the surgeons, and getting the surgery behind us and this stupid EC!!

Niki

jthomas233

Don't apologize to anyone!
Niki-

YOU are the primary caregiver. These medical people see your husband for an hour or so every few weeks. They should be paying YOU to make sure that their patient(Jeff)shows up on time, adequately medicated, and in a good frame of mind!

It seems to me that these "office miscommunications" happen all to often. You have every right to be upset about the fact that the nurse practitioner did not deliver the news to you without understanding the details of your previous scans.

You have every right to be upset ANYWAY! There are tissues in every exam room at my oncologist's office....I'm sure they get used pretty heavily.

It sounds like good news to me, by the way!

Other Jeff

sandy1943

Last year I had a ct scan
Last year I had a ct scan with a new machine in my drs new office. I had my test the second day of the machines use. It came back with all kind of new things showing up. I was immediately sent for a Pet scan. For a week I was almost making funeral arrangements I was so negative. My scan came back good. The dr. realized the new machine showed so much more ,that it looked like new things. I'm glad there is a better scanner. I get the results of my three year scan on Monday. Even though I feel all is well I still have a little (scaniety).
It sounds like all is good enough for surgery. I will be praying Jeff will be given the date on the 24th,
Sandra

Peg59

sandy1943 said:

Last year I had a ct scan
Last year I had a ct scan with a new machine in my drs new office. I had my test the second day of the machines use. It came back with all kind of new things showing up. I was immediately sent for a Pet scan. For a week I was almost making funeral arrangements I was so negative. My scan came back good. The dr. realized the new machine showed so much more ,that it looked like new things. I'm glad there is a better scanner. I get the results of my three year scan on Monday. Even though I feel all is well I still have a little (scaniety).
It sounds like all is good enough for surgery. I will be praying Jeff will be given the date on the 24th,
Sandra

Never be embarrassed for showing emotion
I've gone from tears, to hope and back again more times than I can count now. And it comes at really strange times or news. People understand and holding things in is not healthy for anyone.

What you experienced with the nurse was unnecessary. I also think the medical staff sometimes looses touch. But they work with patients who vary from severe denial to full faith and acceptance, and varying degrees of understanding from those who can only grasp the fundamentals to those with vast medical knowledge. I'm sure it's hard for them to switch gears from one patient to another or to loose compassionate insight altogether. For someone other than a medical staff that knows you and knows where you are emotionally to just read off a written result cold, is poor judgment.

We knew Mo had 2 regions of lymph nodes that showed activity during the pet scan but when they put in his port for chemo they also decided to do a mediastinoscopy to check 2 of them (just to make sure). We were fully prepared for positive results. Mo and I were actually joking around in the recovery room and the recovery nurse was so grave and kept saying "I am so sorry." We thought she knew more than we were told and that was scary. Then she asked if we "knew" he had cancer. She had no idea where we were at with emotion or understanding and really fumbled with trying to help. She thought we were either in denial or hadn't known. Good thing we did know and didn't learn it from her. That would have put a real stab to our hope.

ArchTB

Tom had 32 nodes removed!
Hi Niki,

I cannot tell you not to be upset or not to worry, because just being in the situation when you have to deal with this disease is already upsetting and worrisome. Nonetheless, I do want to tell you that Jeff's story continues to resemble my husband's (who is doing great by the way). Tom had suspicious borderline something going on in one of his adjacent lymph nodes. He responded well to chemo and radiation with significant reduction in the tumor size, and went into surgery.
Although he had suspicious whateverness in one node only, the surgeon removed 32 (!!!) just to make sure nothing had spread. He says that Tom can be just fine without them since they are supporting the part of esophagus and stomach that has been removed anyway. Apparently it is a common procedure to remove all adjacent lymph nodes regardless of whether or not they light up in the scan.

Keep your chin up and stop crying in front of Jeff!
Olya

oriontj

We always have them call us
We usually wait a week before meeting with the oncologist. So we have specifically asked they call with the results. This gives us a chance to be upset if need be at home and gather ourselves for the appointment or be happy at home. It eliminates getting unwelcome news in the office.

jan

sammy123

oriontj said:

We always have them call us
We usually wait a week before meeting with the oncologist. So we have specifically asked they call with the results. This gives us a chance to be upset if need be at home and gather ourselves for the appointment or be happy at home. It eliminates getting unwelcome news in the office.

jan

I remember that our Doctor
I remember that our Doctor from UPMC said that this cancer usually travels down not up. My husband had many hot spots that were old granulomas, scar tissue, etc I would really try not to cry in front of Jeff. I know it is hard but that might help keep your emotions in check. We are all here for you. God Bless.

sammy123

sammy123 said:

I remember that our Doctor
I remember that our Doctor from UPMC said that this cancer usually travels down not up. My husband had many hot spots that were old granulomas, scar tissue, etc I would really try not to cry in front of Jeff. I know it is hard but that might help keep your emotions in check. We are all here for you. God Bless.

Also, your husband is the
Also, your husband is the same stage as my husband was T2N1MO. Took 35 nodes out during the MIE at UPMC and all were negative. No post chemo necessary. Good Luck

Daisylin

sammy123 said:

Also, your husband is the
Also, your husband is the same stage as my husband was T2N1MO. Took 35 nodes out during the MIE at UPMC and all were negative. No post chemo necessary. Good Luck

a Weenie???? LOL
We had a similar miscommunication experience, and I know the feeling of the sheer meltdown. We had a resident come in and tell us that the cancer in his stomach had shown changes. We started freaking out...... STOMACH?????? There was no stomach cancer before!!! So, she looks at the chart and says, "oh, I meant the esophagus". Jeepers! This turned out to be our 'good news' appointment, back in June when his tumours had shrunk to a degree. We were so frazzled by the mistake, we were hardly able to take in the news. Unfortunately they are only human, and not the gods we sometimes expect them to be.

So, here's to hoping the news was in fact good, full glass all the way! Thinking of you and Jeff. (and you're not a weenie) That sounded so much like something Lee would say, I LOL'd when I read that.

Chantal

NikiMo

ArchTB said:

Tom had 32 nodes removed!
Hi Niki,

I cannot tell you not to be upset or not to worry, because just being in the situation when you have to deal with this disease is already upsetting and worrisome. Nonetheless, I do want to tell you that Jeff's story continues to resemble my husband's (who is doing great by the way). Tom had suspicious borderline something going on in one of his adjacent lymph nodes. He responded well to chemo and radiation with significant reduction in the tumor size, and went into surgery.
Although he had suspicious whateverness in one node only, the surgeon removed 32 (!!!) just to make sure nothing had spread. He says that Tom can be just fine without them since they are supporting the part of esophagus and stomach that has been removed anyway. Apparently it is a common procedure to remove all adjacent lymph nodes regardless of whether or not they light up in the scan.

Keep your chin up and stop crying in front of Jeff!
Olya

Buck up is right!
Hi Olya,

Thanks for sharing your story about Tom and his suspicious something or other. It can start to be really frustrating when you realize these diagnostic tests are not an exact science. I know that I need to keep my chin up, and not cry in front of Jeff. That is just easir said than done sometimes for me. I think this is the first time I cried since treatment started, but I get it, I need to be more positive especially around Jeff. I so look forward to meeting with the surgeon and getting things underway.

Thanks again for sharing, and I am glad that Tom is doing well.

Niki

NikiMo

sammy123 said:

Also, your husband is the
Also, your husband is the same stage as my husband was T2N1MO. Took 35 nodes out during the MIE at UPMC and all were negative. No post chemo necessary. Good Luck

Great news!
Hi Sammy123,

That is great news that your husband doesn't have to have post-op chemo. Was his pre-op PET scan clear? I think I reacted so poorly yesterday because I really felt that the chemo and radiation would do more to get rid of the cancer. Maybe we won't know the true results until after the pathology reports.

Thanks for sharing your story with me,

Niki

TerryV

NikiMo said:

Buck up is right!
Hi Olya,

Thanks for sharing your story about Tom and his suspicious something or other. It can start to be really frustrating when you realize these diagnostic tests are not an exact science. I know that I need to keep my chin up, and not cry in front of Jeff. That is just easir said than done sometimes for me. I think this is the first time I cried since treatment started, but I get it, I need to be more positive especially around Jeff. I so look forward to meeting with the surgeon and getting things underway.

Thanks again for sharing, and I am glad that Tom is doing well.

Niki

According to Nick....
Niki,

It's good advice not to let Jeff see you fall apart BUT.....

It's also been very important for Nick to be able to help ME pull it together every now and then. I'm not saying this should be a common occurance, but it has done wonders for his self-worth when he's able to do something for me. He HATES being the one in need.

So, every now and then, it's perfectly okay to be "the weenie" ;-)

Positive thoughts to the Sophomore, Junior, and Senior classes.

Terry
wife of Nick, Stage 3

TerryV

NikiMo said:

Buck up is right!
Hi Olya,

Thanks for sharing your story about Tom and his suspicious something or other. It can start to be really frustrating when you realize these diagnostic tests are not an exact science. I know that I need to keep my chin up, and not cry in front of Jeff. That is just easir said than done sometimes for me. I think this is the first time I cried since treatment started, but I get it, I need to be more positive especially around Jeff. I so look forward to meeting with the surgeon and getting things underway.

Thanks again for sharing, and I am glad that Tom is doing well.

Niki

the world according to Nick
Everyone is right, it's best not for Jeff to see you fall apart BUT.......

Nick also appreciates when he is able to provide support to ME. He tires of me being there to pick up his pieces. He HATES being the one in need, or being too tired, or too nauseated or "whatever" the ailment of the day is. He has told me that it's been good for his sense of self worth to be able to be there to be strong for me.

So no, not every time, but sometimes, you need to let Jeff hug and comfort YOU. Our mates need to be needed, not just cared for.

Positive thoughts to the Sophomore, Junior and Senior classes as we head toward "Grad School"!

Terry
wife of Nick, Stage 3

sammy123

NikiMo said:

Great news!
Hi Sammy123,

That is great news that your husband doesn't have to have post-op chemo. Was his pre-op PET scan clear? I think I reacted so poorly yesterday because I really felt that the chemo and radiation would do more to get rid of the cancer. Maybe we won't know the true results until after the pathology reports.

Thanks for sharing your story with me,

Niki

His pre-op PET scan had many
His pre-op PET scan had many hot spots and I remember leaving the dr. office with feelings of dread and fear. You are absolutely right, the pathology is everything. Pet scans carry good information and sometimes it carries false information as well. Dr. Luketich did 35 nodes (bx) at time of surgery. Take a deep breath and remember that your husband and mine were lucky to catch it early. Stay up!!!!

NikiMo

jthomas233 said:

Don't apologize to anyone!
Niki-

YOU are the primary caregiver. These medical people see your husband for an hour or so every few weeks. They should be paying YOU to make sure that their patient(Jeff)shows up on time, adequately medicated, and in a good frame of mind!

It seems to me that these "office miscommunications" happen all to often. You have every right to be upset about the fact that the nurse practitioner did not deliver the news to you without understanding the details of your previous scans.

You have every right to be upset ANYWAY! There are tissues in every exam room at my oncologist's office....I'm sure they get used pretty heavily.

It sounds like good news to me, by the way!

Other Jeff

Thanks Jeff
You are right there are tissues in every office and waiting room I have been in at Penn, suppose they are there for a reason. I just was really hoping to hear "the nodes are clear, and the tumor is gone" guess I was delusional to think they would know that. I look forward to meeting with the surgeon and getting his take. Jeff and I sat down and spoke tonight and we realized that we really have no idea where we stand at this point. We don't know if the tumor in the esophagus shrank, what the thing in the lung is, or if those nodes are anything to worry about. We just want to get to surgery, that is all we know at this point.

Thanks again for being encouraging,

Niki

NikiMo

sammy123 said:

His pre-op PET scan had many
His pre-op PET scan had many hot spots and I remember leaving the dr. office with feelings of dread and fear. You are absolutely right, the pathology is everything. Pet scans carry good information and sometimes it carries false information as well. Dr. Luketich did 35 nodes (bx) at time of surgery. Take a deep breath and remember that your husband and mine were lucky to catch it early. Stay up!!!!

Starting to calm down now
Sammy,

Thanks for answering my question, this is starting to make me feel more relaxed. I need to just go with the flow a bit more. I came home today and Jeff and I had a good laugh about the visit yesterday. We find laughter is good medicine, so we made fun of me not hearing anything the nurse said beyond 'lymph node'. The way the doctor always uses analogies of my husband cheating on me, and that I don't know what could happen tomorrow...he is trying to help but I don't understand these analogies at all! Anyway, I apologized for getting emotional and he understands, and I said I would try not to do that again at the doctor's office.

Smiling, and I appreciate your posts!

Niki

NikiMo

Daisylin said:

a Weenie???? LOL
We had a similar miscommunication experience, and I know the feeling of the sheer meltdown. We had a resident come in and tell us that the cancer in his stomach had shown changes. We started freaking out...... STOMACH?????? There was no stomach cancer before!!! So, she looks at the chart and says, "oh, I meant the esophagus". Jeepers! This turned out to be our 'good news' appointment, back in June when his tumours had shrunk to a degree. We were so frazzled by the mistake, we were hardly able to take in the news. Unfortunately they are only human, and not the gods we sometimes expect them to be.

So, here's to hoping the news was in fact good, full glass all the way! Thinking of you and Jeff. (and you're not a weenie) That sounded so much like something Lee would say, I LOL'd when I read that.

Chantal

From one weenie to another...lol
I can't believe that about the esophagus and stomach mix up, I would have passed out for sure. I can relate too, I didn't absorb any information they gave me after saying there were new nodes. Not even after the doctor came in and said that they didn't light up very much, it is just kind of a blank. Jeff had to brief me today on the other things that were said, which wasn't much really. I do think I put the doctors on a pedestal and I am now starting to understand that medical science isn't exactly a 'hard science'. I have my undergrad in biology and I worked in cancer research (in a molecular biology lab) for the first few years of my career. The work I did was very black and white, there were no gray areas. The results were always cut and dry and could be reproduced. The tests the doctors use for diagnostic testing, outside of biopsies seem like they are open for interpretation. Lesson learned here is that I need to just chill out, process the information, and not react so quickly.

I'm not really a weenie, but my Jeff always says goofy things to make me laugh, one reason I love him so much. Sounds like you understand the joys of loving someone who doesn't take things all too seriously

Niki