New here and questions about disappearing/shrinking nodes

[Nordy1]

Hi everyone -I’ve lurked here for a few months, I find it very comforting to read about other people going through similar issues. I’ve managed through most of this process with my sanity intact and a pretty good attitude. I have the odd day I hide from everyone and just worry and stew then I’m good for another few weeks.

I’m really worried about my disssapearing nodes (indeterminate)
I was diagnosed stage 3 n1c with 3 extranodal foci almost 1 yr ago and had my resection in March . I have completed 11 of 12 intended treatments but I had to much nerve damage from the oxy to complete the 12. I just had my CT scan and everything has come back clear, great news but concerning because my baseline scan showed a 6 mm node in my lung with some opacity in the bases along with an 8 mm and 4 mm node in my liver as well as a 1.1cm potential cyst on my kidney.
My concern is that all of these things have now disappeared except the potential kidney cyst which has shrunk to 9mm

When we initially looked at the indeterminate nodes on the base line CT ( back in the beginning) I was told that if they grow during chemo they are suspect and if the shrink they are suspect..... mine are gone or shrunk but nobodies really saying anything.

Has anyone else had this happen?

I’m assuming it puts me to stage 4 with distant mets but I feel like the doctor is just waiting to see what ha-pens on the next CT. Maybe that’s all he can do?

[Nohogirl]

Hi Nordy1,

I am sorry you are going through confusion. Unfortunately I don't have answers for you. We are in the same shoe. My husband had one 9mm enlarged iliac lymph node before he started his chemo. Had MRI after 4 cycles and his lymph node is still there, 9mm not bigger not smaller. We are confused too, we don't know if its good or bad. Not sure what to think is it not responding to chemo or it is not shrinking because its reactive.
Could they take biopsies from yours? To me that would be the most accurate way of telling. Unfortunately for my husband biopsy is not an option because of its location.

Good luck and keep us posted.

[Nordy1]

Hi Nohogirl - Thanks for replying,
I'm sure from reading the forums here that everyone is anxious about all the unknowns and we all wish for black and white answers but I cant stop myself for looking for those black and whites anyways ...

I feel like I'm trying to prepare for stage 4 and next steps but also trying not to be being negative. I should be so happy that everything has resolved ( I am on may levels) but I feel like Im waiting for the other shoe to drop. At least if I know for sure they are mets then I can make a plan - Im all about the plans

I have an onc appointment tomorrow and will bring my spread sheets and my many times revised well formulated questions (biopsy being one)... Its my way of trying to control something in this process.

BTW I dont know if your husband would agree with this sentiment but I really feel that this disease/process is every bit or maybe even harder on the loved ones around you. I can do things to make me feel empowered or in control of something but my husband feels completely helpless in this situation and feels he can do nothing meaningful to actually help. I really feel terrible for everyone in my family, the stress of being powerless that they are under. I just want to hug them all the time and tell them to not worry, wishful thinking I know.

I really hope you get some clearer answers for your husband and that you find a way to relieve some of your stresses,

Nordy1

[Deb m]

The PET scan before my husbands surgery showed several nodes along the iliac chain enlarged, so when they did his resection, they were sure to remove them all. Guess what, they were all cancer free. We were told that they were probably enlarged do to infection or something. He did have a high white count and fever when he was diagnosed. Hopefully it's the same situation with you. Time will tell I guess, but I understand how hard the waiting is.

[Nohogirl]

BTW I dont know if your husband would agree with this sentiment but I really feel that this disease/process is every bit or maybe even harder on the loved ones around you. I can do things to make me feel empowered or in control of something but my husband feels completely helpless in this situation and feels he can do nothing meaningful to actually help. I really feel terrible for everyone in my family, the stress of being powerless that they are under. I just want to hug them all the time and tell them to not worry, wishful thinking I know.

I really hope you get some clearer answers for your husband and that you find a way to relieve some of your stresses,

Nordy1[/quote]

Yes, you are right. My husbands diagnoses was a complete shock and up until now my worries dont get better. I took it as my own illness and was also fighting as if it was for my own life. As weird as it may sound there have been days when my husband was actually encouraging, giving me hope. This unknown and uncertainty is killing me slowly and like you said if we could at least have some answers in black and white,.the fight would perhaps be a little easier.

[Nordy1]

Update
I saw the dr today and he has scheduled me for an ultrasound. I’m relieved to be looking at it from another angle so to speak, he believes the liver and lung spots were benign and that the 2mm difference in the kidney spot is just a measurement thing from CT to another. I also heard my MSI came back normal so good news all around! I’m ready to put it out of my mind ...until next months CT and ultrasound

I’m not sure how long you have to be on this journey before you are calm about scans

Wishing you all good news,
O

[Cmarie03]

Nordy1, any update on your scans? I just had an appt today and they saw “indeterminate” spots on my lung and liver. I’m in the same spot.

[Nordy1]

Update:
Sorry for the delay in response, I took a break from worry and took my family to Mexico for a holiday!
Hi Cmarie03 - I'm sorry your in the same spot, its already a complicated process with a huge amount of unknowns but these indeterminate spots just add another dimension to all the fears and worries.

My Dr. pronounced me stable on my last visit and told me we will watch and wait on the indeterminate spots- scan again in 4 months. It was pretty anticlimactic, I should have been more excited but its hard to hear that while it could be cancerous, its not growing fast and there is little risk in the watch and wait program.
I had test results and the only new thing I learned was that the kidney lump was for sure not a cyst, it's solid. increases the cancer possibility but its also extremely rare for colon cancer to go to the kidney. It could also be another benign thing that we all have in our bodies. Kidney cancer is extremely slow growing and not very prone to metastasizing so I'm comfortable with waiting a few months on it (its also in a hard spot to biopsy)

Liver spots are now thought to be fatty liver and my onc. is pretty confident of waiting another 3 months on these as well. Lung spots are still gone,,, so thats good, ( a little anxiety over did they respond to chemo or was it infection)

I was extremely freaked out for a couple weeks waiting for the results, and it took a couple weeks after the recommendation to watch and wait before I really calmed down. I went to a cancer therapist for the first time and I recently went to a group support meeting and I found both of those meetings extremely helpful to listen to other people speak about the fears and emotions they were experiencing as well. I'm much calmer now, I really have been calm most of the process but the indeterminate spots really were/are my krypton - did I use that right??

I still sit and contemplate having a PET/CT scan done privately and may do that but I'm not sure which place - I want to be sure I go somewhere that has the most current cameras, machines and radiologists.

I'm also still waiting for the other shoe to drop, I don't know if that will ever go away and maybe that's the way it should be. Plan for the worst-hope for the best. Just don't let it consume your life.
I hope you find some moments of peace in between bouts of anxiety, and I'm wishing you all the best. Let me know how its going with you,

take care
Nordy1