Please help with any input - probable reoccurrence

MandiePandie

I'm beyond devastated now and so confused. Can anyone give it to me straight about this impression from my dads CT. Or any information they know about mesentery metastasi, especially one so close to the artery. 

"There is a small aortocaval lymph node which measures 8mm x 7mm on series 5 image 56. There is a soft tissue attenuated implant seen along the course of the IMA measuring 17mm x 11mm on series 5 image 85.

Findings are suspicious for metastatic implant in the central mesentery adjacent to course of IMA. A small however indeterminate aortocaval lymph node is present."

My family was so dismissive about any talks about recurrence and now I have them all demanding to know from me how he could have a metastasis if he just was on chemo and "they said the cancer wasnt aggressive" and so many other questions that I just don't know. Ive known that cancer does what it wants and that's why it pays to be viligent, because I am the one that is on the forums, I read all your stories and feel the heartache. They all just leave me alone to worry and research and stick their heads in the sand but then come demanding answers from me when things aren't turning out so well. 

sorry if this post doesn't make much sense but I'm just so upset.

Trubrit

Of course you are upset.....

and on many levels. 

I cannot help with the medical side, but I can tell you how I look at it.  I call it 'Luck of the draw!' Honestly!  Why did I get a recurrence?  I did all the right things, suffered through chemo & Hell, I mean radiation; yet it was back within two months. 

Why am I alive and not JanJan (and all of the other's)? 

No answer.  

So, tell your family just what you wrote in your post  Ive known that cancer does what it wants,  Becasue there is no answer that will satisfy. 

Roll with the pain you are experincing on your dad's behalf, then move on. It is what we all do. It is what we all have to do, or buckle under the pressure and that helps no one. 

Now you need to play the waiting game, and see what the Oncologist makes of the results. 

I wish your dad the best, and comfort for you as you stand by his side. 

Tru

Tueffel

Unlucky

Sometimes people are just unlucky. When you read here and somewhere else you fibd so many different histories of patients. Statistically wise they should not be here, statistically wise they should be here. Just based on statistics my dad should not have cancer. But unfortunately medicine is never 100%, it is only 99.9999% and you can add there a lot of 9. Meaning even if you do everything right, there is this really really small percentage and unfortunately your dad falls into this. Be angry about it, it is okay to be frustrated. At the end cancer is cancer, it simply sucks, it is sometimes unpredictable and sometimes not. Sometimes the odss are in your favor, sometimes not. 

For now it is good that the lymph node is not 10mm. I cant tell you what this soft tissue mass is. A radiologist told me that they can only analyze pictures. If I send them the description they cant say anything. 

I hope you will soon get some answers from the doctors what will happen now. 

Tueffel

beaumontdave

Sorry Mandie, that is a

Sorry Mandie, that is a stressful and frustrating result post chemo, but it does occur. After my chemo, the CEA started a real slow rise, I was busy with work and didn't really know what it meant. A year and a half passes before they sound any alarm about it, not getting positives from CT's, PET's, or even needle biopsies so they keep waiting and checking at 90 day intervals until a needle biopsy finally registers a met. I go in, a couple months after the positive as they're ''not particularly worried'',   to find there are three very separated mets, each 1-3cm's in my liver, and when I ask how this could be, the onc-surgeon says it was likely already there when I started chemo. This seeming casualness got me angry, and I snapped at this head surgeon when he asked what I wanted to do, chemo, ablation or surgery. i told him ''I wanted it the hell out of me, now'', and he's response was ''yea it always seems to come back the other ways''. After that, I knew I needed to educate myself a whole lot more and push my treatments along, be a better advocate for myself. After that, was one more go-round with a new met popping up over a similar time period, and yet still I'm here, NED, several years after. The point is that my cancer wasn't considered aggressive, but it still was lurking after the full treatment of FOLFOX, and though way too cool about it all for my liking, they still managed to get it all. I hope your doctors get on top of all this, and get aggressive on your dad's behalf, and your family gets more involved and helpful to you.........................................Dave

LindaK.

Hi Mandie, I'm sorry your family is putting pressure on you about the test results.  It should be explained to all of you from your father's oncologist.  That way, everyone can ask questions and everyone can hear the answers.  I hope your father has an oncologist that will spend time to do that.

My husband had a rucurrence in his small intestine and also in lymph nodes about 4 months after finishing 12 rounds of Folfox for colon cancer (they staged it II originally)  Oncologist showed us life expectancy number and chance of recurrence at about 10 % after Folfox.  My husband, who was almost always the optimist, said "Well, someone has to be in that 10%"   When he started having issues again, he went back to his GI doctor (who told him to lose weight), his surgeon and oncologist for a scan (said he didn't need it)  A few weeks after Christmas he ended up in the hospital  for 21 hellish days due to really crappy care.  They were treating him for constipation and taking 1 x-ray every day waiting for his original surgeon to see him, which took over a week.  Not one scan was ordered.  He finally had surgery to remove another cancerous tumor in his small intestines.  I ran into our pricmary care doctor in the hallway of the hospital and he said to me "I'm worried about those two other spots"  I must have looked like a deer in the headlights, not one person had mentioned these two other spots.  the day of his surgery, I called his oncologist's office (which is connected to the small hospital) to tell them more cancer had been removed.  It took that lazy oncologist 3 days to get over to see him, around 8 pm and nonchalantly said "Well, now you're stage 4"  What a blow that was to both of us.  When we went to the onc office after he was discharged, lazy onc was in the hallway on a corded phone on the wall and yelled into our room "There's two spots on the scan" and continued to talk on the phone.  We had waited an hour already in the room and my husband way laying down because he wasn't feeling well due to contracting c-dif in the hospital.  When onc finally came in, he asked why my husband was laying down.  We told him and he said "I wish you hadn't come in with c-dif"  I said "I wish he never got it"  I asked to see the scan on the computer, all he had was a report, no pictures.  My husband then said "I think it's time for a 2nd opinion"  Lazy onc said "I know I'm a good doctor so I don't have a problem with that"  The next day we had an appt at a much larger, professional and hopeful cancer center.  Day after, he started Folfiri.  Also, PET scan was scheduled a few days later.  Dr showed us the PET scan on the computer, amazing to see.  I wish we had started at that bigger much better cancer center, but you can't look back.  I don't know if the outcome would have been any different.  I think my husband's cancer was more aggressive than they ever told us and the 12 Folfox treatments just kept it at bay for a few months.

Maybe it's time for a 2nd opinion for your father.  Also, like I said above, someone who will spend some time answering your questions.  Don't be afraid to ask for all this.  Your father is ultimately running the show, but the patient can always use lots of support.  Our daughter is a nurse and I think she spoke over her father and me sometimes, but we didn't know much better at the time.  It's hard to know what to advocate for if you've never been in the situation.

I hope your father gets the help he needs.

Linda

annie4145

LindaK. said:

Hi Mandie, I'm sorry your family is putting pressure on you about the test results.  It should be explained to all of you from your father's oncologist.  That way, everyone can ask questions and everyone can hear the answers.  I hope your father has an oncologist that will spend time to do that.

My husband had a rucurrence in his small intestine and also in lymph nodes about 4 months after finishing 12 rounds of Folfox for colon cancer (they staged it II originally)  Oncologist showed us life expectancy number and chance of recurrence at about 10 % after Folfox.  My husband, who was almost always the optimist, said "Well, someone has to be in that 10%"   When he started having issues again, he went back to his GI doctor (who told him to lose weight), his surgeon and oncologist for a scan (said he didn't need it)  A few weeks after Christmas he ended up in the hospital  for 21 hellish days due to really crappy care.  They were treating him for constipation and taking 1 x-ray every day waiting for his original surgeon to see him, which took over a week.  Not one scan was ordered.  He finally had surgery to remove another cancerous tumor in his small intestines.  I ran into our pricmary care doctor in the hallway of the hospital and he said to me "I'm worried about those two other spots"  I must have looked like a deer in the headlights, not one person had mentioned these two other spots.  the day of his surgery, I called his oncologist's office (which is connected to the small hospital) to tell them more cancer had been removed.  It took that lazy oncologist 3 days to get over to see him, around 8 pm and nonchalantly said "Well, now you're stage 4"  What a blow that was to both of us.  When we went to the onc office after he was discharged, lazy onc was in the hallway on a corded phone on the wall and yelled into our room "There's two spots on the scan" and continued to talk on the phone.  We had waited an hour already in the room and my husband way laying down because he wasn't feeling well due to contracting c-dif in the hospital.  When onc finally came in, he asked why my husband was laying down.  We told him and he said "I wish you hadn't come in with c-dif"  I said "I wish he never got it"  I asked to see the scan on the computer, all he had was a report, no pictures.  My husband then said "I think it's time for a 2nd opinion"  Lazy onc said "I know I'm a good doctor so I don't have a problem with that"  The next day we had an appt at a much larger, professional and hopeful cancer center.  Day after, he started Folfiri.  Also, PET scan was scheduled a few days later.  Dr showed us the PET scan on the computer, amazing to see.  I wish we had started at that bigger much better cancer center, but you can't look back.  I don't know if the outcome would have been any different.  I think my husband's cancer was more aggressive than they ever told us and the 12 Folfox treatments just kept it at bay for a few months.

Maybe it's time for a 2nd opinion for your father.  Also, like I said above, someone who will spend some time answering your questions.  Don't be afraid to ask for all this.  Your father is ultimately running the show, but the patient can always use lots of support.  Our daughter is a nurse and I think she spoke over her father and me sometimes, but we didn't know much better at the time.  It's hard to know what to advocate for if you've never been in the situation.

I hope your father gets the help he needs.

Linda

I second Linda's

I second Linda's recommendation.  Make sure that you are happy with your doctor and the center that you are treating at.  If you are, that is fine.  I did switch hospitals because the first doctor wouldn't listen to me, and was condensending.  The second doctor gave me a choice on the two types of medicine i could use, but based on her explanation, I went with her recommendation.  But it was nice to be spoken to like an intelligent person.   If you are near a major cancer center, it might be the time to check that out.  I am a firm believer that some hospitals are better than others.  But I am also blessed to be in the Bay area.  It would be a lot harder if there is only one hospital in your area, and that is the situation for most people. 

MandiePandie

Trubrit said:

Of course you are upset.....

and on many levels. 

I cannot help with the medical side, but I can tell you how I look at it.  I call it 'Luck of the draw!' Honestly!  Why did I get a recurrence?  I did all the right things, suffered through chemo & Hell, I mean radiation; yet it was back within two months. 

Why am I alive and not JanJan (and all of the other's)? 

No answer.  

So, tell your family just what you wrote in your post  Ive known that cancer does what it wants,  Becasue there is no answer that will satisfy. 

Roll with the pain you are experincing on your dad's behalf, then move on. It is what we all do. It is what we all have to do, or buckle under the pressure and that helps no one. 

Now you need to play the waiting game, and see what the Oncologist makes of the results. 

I wish your dad the best, and comfort for you as you stand by his side. 

Tru

As always

You give great input, I hope that you know that. I played the waiting game and will make a new post about it but I just wanted to let you know I appreciate you and the time you give, it means so much to me and im sure many others. 

 

MandiePandie

Tueffel said:

Unlucky

Sometimes people are just unlucky. When you read here and somewhere else you fibd so many different histories of patients. Statistically wise they should not be here, statistically wise they should be here. Just based on statistics my dad should not have cancer. But unfortunately medicine is never 100%, it is only 99.9999% and you can add there a lot of 9. Meaning even if you do everything right, there is this really really small percentage and unfortunately your dad falls into this. Be angry about it, it is okay to be frustrated. At the end cancer is cancer, it simply sucks, it is sometimes unpredictable and sometimes not. Sometimes the odss are in your favor, sometimes not. 

For now it is good that the lymph node is not 10mm. I cant tell you what this soft tissue mass is. A radiologist told me that they can only analyze pictures. If I send them the description they cant say anything. 

I hope you will soon get some answers from the doctors what will happen now. 

Tueffel

Thank you

Sorry for the late reply but thank you so much, especially for mentioning that it was a good sign that the lymph node was not more than 10mm. It gave me a little ray of hope when I felt none. 

We did get some answers and Ill make another post about it, but a sincere thanks to you for taking time to read what I write. Its so helpful.

MandiePandie

beaumontdave said:

Sorry Mandie, that is a

Sorry Mandie, that is a stressful and frustrating result post chemo, but it does occur. After my chemo, the CEA started a real slow rise, I was busy with work and didn't really know what it meant. A year and a half passes before they sound any alarm about it, not getting positives from CT's, PET's, or even needle biopsies so they keep waiting and checking at 90 day intervals until a needle biopsy finally registers a met. I go in, a couple months after the positive as they're ''not particularly worried'',   to find there are three very separated mets, each 1-3cm's in my liver, and when I ask how this could be, the onc-surgeon says it was likely already there when I started chemo. This seeming casualness got me angry, and I snapped at this head surgeon when he asked what I wanted to do, chemo, ablation or surgery. i told him ''I wanted it the hell out of me, now'', and he's response was ''yea it always seems to come back the other ways''. After that, I knew I needed to educate myself a whole lot more and push my treatments along, be a better advocate for myself. After that, was one more go-round with a new met popping up over a similar time period, and yet still I'm here, NED, several years after. The point is that my cancer wasn't considered aggressive, but it still was lurking after the full treatment of FOLFOX, and though way too cool about it all for my liking, they still managed to get it all. I hope your doctors get on top of all this, and get aggressive on your dad's behalf, and your family gets more involved and helpful to you.........................................Dave

Maybe it was for the best

Maybe it was for the best that you didnt know what the slow rise in CEA meant. I struggle with that a lot, just knowing that certain things COULD mean something bad just seems to induce more anxiety. The struggle also lies in how much I should explain to my dad. Although, the nonchalant vibe of some of the doctors just really gets on my nerves, my dads doctors explain very little to him and then act shocked when he is so anxious. Anyway your replys, like so many others, mean so much to me!  Im very grateful for all that you share. I frequently remember aspects of your journey and they do give me hope and direction. Thanks again. 

MandiePandie

LindaK. said:

Hi Mandie, I'm sorry your family is putting pressure on you about the test results.  It should be explained to all of you from your father's oncologist.  That way, everyone can ask questions and everyone can hear the answers.  I hope your father has an oncologist that will spend time to do that.

My husband had a rucurrence in his small intestine and also in lymph nodes about 4 months after finishing 12 rounds of Folfox for colon cancer (they staged it II originally)  Oncologist showed us life expectancy number and chance of recurrence at about 10 % after Folfox.  My husband, who was almost always the optimist, said "Well, someone has to be in that 10%"   When he started having issues again, he went back to his GI doctor (who told him to lose weight), his surgeon and oncologist for a scan (said he didn't need it)  A few weeks after Christmas he ended up in the hospital  for 21 hellish days due to really crappy care.  They were treating him for constipation and taking 1 x-ray every day waiting for his original surgeon to see him, which took over a week.  Not one scan was ordered.  He finally had surgery to remove another cancerous tumor in his small intestines.  I ran into our pricmary care doctor in the hallway of the hospital and he said to me "I'm worried about those two other spots"  I must have looked like a deer in the headlights, not one person had mentioned these two other spots.  the day of his surgery, I called his oncologist's office (which is connected to the small hospital) to tell them more cancer had been removed.  It took that lazy oncologist 3 days to get over to see him, around 8 pm and nonchalantly said "Well, now you're stage 4"  What a blow that was to both of us.  When we went to the onc office after he was discharged, lazy onc was in the hallway on a corded phone on the wall and yelled into our room "There's two spots on the scan" and continued to talk on the phone.  We had waited an hour already in the room and my husband way laying down because he wasn't feeling well due to contracting c-dif in the hospital.  When onc finally came in, he asked why my husband was laying down.  We told him and he said "I wish you hadn't come in with c-dif"  I said "I wish he never got it"  I asked to see the scan on the computer, all he had was a report, no pictures.  My husband then said "I think it's time for a 2nd opinion"  Lazy onc said "I know I'm a good doctor so I don't have a problem with that"  The next day we had an appt at a much larger, professional and hopeful cancer center.  Day after, he started Folfiri.  Also, PET scan was scheduled a few days later.  Dr showed us the PET scan on the computer, amazing to see.  I wish we had started at that bigger much better cancer center, but you can't look back.  I don't know if the outcome would have been any different.  I think my husband's cancer was more aggressive than they ever told us and the 12 Folfox treatments just kept it at bay for a few months.

Maybe it's time for a 2nd opinion for your father.  Also, like I said above, someone who will spend some time answering your questions.  Don't be afraid to ask for all this.  Your father is ultimately running the show, but the patient can always use lots of support.  Our daughter is a nurse and I think she spoke over her father and me sometimes, but we didn't know much better at the time.  It's hard to know what to advocate for if you've never been in the situation.

I hope your father gets the help he needs.

Linda

Optimism

There isnt a shred of optimism in my dads side of the family tree, and unfortunanetly I inherited the same absence of the trait. Im glad your husband is has some optimism, especially given that experience he went through being told he was stage 4 like that. 

Im a big fan of second and third and fourth opinions. My dad, not so much, the idea of it all overwhelms him, but from stories like yours I know its necessary. 

Thank you 

DanNH

Things can be absolutely

Things can be absolutely overwhelming for older folks. I ran in to that with my Dad. You balance that out. You can guide things along but never forget that he is a grown adult man and should be able to make his own decision, unless he is incompetent . I had to remind myself and my sisters of that through our process. The journey was exhausting and striking the balance took constant effort and vigilance. I rot asking mysel how I would want to be treated by my children. He didn't make it easy but we did the best we could for him.  

Dan