Stage 3 or stage 4??

My doctors have told me that I’m “stage 3/ kinda stage 4”. So far I’ve done six weeks of 5fu and radiatio. I’m scheduled for APR surgery tomorrow. 

So, today I found out what the “kinda” part of my staging meant. My original scans showed bilateral adenocarcinoma in my inguinal (groin) lymph nodes. When I asked if they are being addressed in the surgery I was told that if there really is cancer there that they would not do surgery on it and that it is not currently part of tomorrow‘s surgery. The nurse went on to clarify that cancer in that location means I am stage 4. 

So I guess what I’m wondering is why I was told I’m stage three when my scans indicated that I’m stage four? Can it show as a false positive in scans? Or can it go away during the pre-surgery chemo and radiation? Am I really stage four? The scans have also shown spots on my liver but the doc insists they are benign cysts.

Feeling very confused. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,623 Member
    I love nurses

    BUT, when it comes to staging, get it from your Oncologist.  

    True staging will happen after surgery, when they can send tissue, tumour, lymph nodes off to pathology.  

    Welcome to the forum. I wish you luck tomorrow, and pray all goes well with your recovery.  Be sure to come visit us often. We are all here for you. 

    Tru

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    I was first staged 3b, but

    I was first staged 3b, but when the liver mets showed, the surgeon felt the seeds were there before/during the chemo, so I consider myself a 4, but the rules say I'm a 3b with metastasis. Either way it's scary. My Pet scan showed affected nodes under my armpits and neck, so know false positives happen. The other thing is they kept calling them cysts in my liver, while needle biopsies showed no cancer, but their growth over time changed the language from cysts to lesions. I tell you all this so your prepared either way it goes. They can't always be certain, or give you the certainty we'd all prefer.....................................Dave

  • abita
    abita Member Posts: 1,108 Member

    I was first staged 3b, but

    I was first staged 3b, but when the liver mets showed, the surgeon felt the seeds were there before/during the chemo, so I consider myself a 4, but the rules say I'm a 3b with metastasis. Either way it's scary. My Pet scan showed affected nodes under my armpits and neck, so know false positives happen. The other thing is they kept calling them cysts in my liver, while needle biopsies showed no cancer, but their growth over time changed the language from cysts to lesions. I tell you all this so your prepared either way it goes. They can't always be certain, or give you the certainty we'd all prefer.....................................Dave

    Do you know what caused the

    Do you know what caused the cysts? And if they looked like cancer on CT Scan or MRI. And my frantic questioning is because they found 4 spots on my post chemo scan, which they say is most likely cancer recurrence, and it is super silly but I have been praying that the pet ct scan I am getting next week will say not cancer, so looking for any hope. 

  • mountainhiker
    mountainhiker Member Posts: 54
    edited August 2018 #5
    abita said:

    Do you know what caused the

    Do you know what caused the cysts? And if they looked like cancer on CT Scan or MRI. And my frantic questioning is because they found 4 spots on my post chemo scan, which they say is most likely cancer recurrence, and it is super silly but I have been praying that the pet ct scan I am getting next week will say not cancer, so looking for any hope. 

    Spots on liver

    They can be caused by many things.  I had my liver resection July 2017 and I still have one or two spots that show up on my scans that my oncologist says are pockets of fluid.  Weren't there before the surgery, but have been there ever since.  

    mountainhiker

  • abita
    abita Member Posts: 1,108 Member

    Spots on liver

    They can be caused by many things.  I had my liver resection July 2017 and I still have one or two spots that show up on my scans that my oncologist says are pockets of fluid.  Weren't there before the surgery, but have been there ever since.  

    mountainhiker

    I guess it is too much to

    I guess it is too much to hope that they just couldn't tell on the MRI and CT and they are actually just cysts or pockets of fluids. The MRI was to see if they were scar tissues, and they aren't. I keep praying that they are some harmless type of benign cyst. 

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    mixed messages

    We had mixed messages, leaning toward the 3. But we used an experimental immunochemo approach aimed at any "distant" lymph nodes to stop any spread and then an extra surgery to take them out too.  The surgery distant lymph para aortic nodes required an aggressive oncological surgeon who could pinch hit for a thoracic surgeon too.  I believe inguinal lymph node dissection is not so difficult,  rather they say its futile.  We disagree on distant LN - get the big stuff and use nicer  (non-standard) adjuncts permanently.  e.g. celecoxib, cimetidine and/or aspirin and heavy duty nutraaceuticals. 

    We used extra blood tests too. e.g. CA199 and LDH.  CA199 helps initially decide whether cimetidine is useful, and can monitor adjust daily immunochemo effectiveness separately from CEA's information. Ditto LDH.  Heavy cyclic chemo disrupts CA199 and LDH after a while and for  some months after cyclical chemo ends.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited August 2018 #8
    Welcome

    Welcome to the board.  I'm sorry that your first post was missed by me and I'm hoping the surgery was a complete success.  Staging all depends on scans, surgery and findings during surgery.  Hope you can get the answers you need.  I'm sure you are still in the hospital but when you get out, please let us know how you are doing.  Wishing you a speedy recovery.

    Kim

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    abita said:

    Do you know what caused the

    Do you know what caused the cysts? And if they looked like cancer on CT Scan or MRI. And my frantic questioning is because they found 4 spots on my post chemo scan, which they say is most likely cancer recurrence, and it is super silly but I have been praying that the pet ct scan I am getting next week will say not cancer, so looking for any hope. 

    The average body has like 12

    The average body has like 12 cysts in it, I just assumed they were there naturally, until the terms were changed, lesion for cyst. They may have gone from watching benign, stable things to focusing on growing mets..................................Dave

  • DTerrie
    DTerrie Member Posts: 1
    edited September 2018 #10
    Colon cancer stage 3c

    i had a colonoscopy less than two weeks ago and resection of colon and removal of lymph nodes 8 days ago,  Of 34 nodes removed 24 had cancer.  Biopsies show stage 3c   So six months oh chemo in about 3 weeks so I can heal from surgery first.  

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    DTerrie said:

    Colon cancer stage 3c

    i had a colonoscopy less than two weeks ago and resection of colon and removal of lymph nodes 8 days ago,  Of 34 nodes removed 24 had cancer.  Biopsies show stage 3c   So six months oh chemo in about 3 weeks so I can heal from surgery first.  

     

    DTerrie

    I'm sorry to hear of your recent diagnosis and surgery and that you had to find us.  Would you please make a new post on the board to introduce yourself and tell us a little bit about your story.  Glad that you are here as we can help you get through this. 

    Kim

  • Trubrit
    Trubrit Member Posts: 5,623 Member
    DTerrie said:

    Colon cancer stage 3c

    i had a colonoscopy less than two weeks ago and resection of colon and removal of lymph nodes 8 days ago,  Of 34 nodes removed 24 had cancer.  Biopsies show stage 3c   So six months oh chemo in about 3 weeks so I can heal from surgery first.  

     

    Welcome to the forum

    Sorry about your diagnosis, but it looks like you are on the road to recovery. 

    We would love to hear from you on the forum homepage here https://csn.cancer.org/forum/128 

    Tru

  • darstark
    darstark Member Posts: 2
    New

    My husband as stage 4 rectal cancer with met to the liver. It has been a year since he was diagnosed. He is having a heck of a hard time with chemo and is in the hospital now with dehydration and diahrhea. It scares me so much. Is there anyone here with this diagnosis? How lond has it been since diagnosis with stage for met to liver? I also was diagnosed the same time as my husband. I have Myeloma which there is not cure for but there is treatment.

    I am new to the site.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    darstark said:

    New

    My husband as stage 4 rectal cancer with met to the liver. It has been a year since he was diagnosed. He is having a heck of a hard time with chemo and is in the hospital now with dehydration and diahrhea. It scares me so much. Is there anyone here with this diagnosis? How lond has it been since diagnosis with stage for met to liver? I also was diagnosed the same time as my husband. I have Myeloma which there is not cure for but there is treatment.

    I am new to the site.

    Darstark

    I'm so sorry to hear of your husband's diagnosis and that he is having a hard time with his treatment.  It would be a good thing to start your own thread on this board.  Just want to welcome you to the board, and sorry that you have to be here.  You sound like a great caregiver and wife trying to get some answers for your husband but if you start your own thread you will get more answers to your questions.  Wishing your husband well.

    Kim

  • Trubrit
    Trubrit Member Posts: 5,623 Member
    darstark said:

    New

    My husband as stage 4 rectal cancer with met to the liver. It has been a year since he was diagnosed. He is having a heck of a hard time with chemo and is in the hospital now with dehydration and diahrhea. It scares me so much. Is there anyone here with this diagnosis? How lond has it been since diagnosis with stage for met to liver? I also was diagnosed the same time as my husband. I have Myeloma which there is not cure for but there is treatment.

    I am new to the site.

    Welcome to the forum

    And Kim is right, please start your own thread, that way folks can answer your question without running wild on the original posters thread. 

    Here is the link to the forum page where you can post   https://csn.cancer.org/forum/128

    And just a quick answer.  I am Four Years five months out from liver surgery, with no evidence of disease, or NED as we like to call it. So there is LOTS of hope for your hubby. 

    Tru

  • abita
    abita Member Posts: 1,108 Member
    edited September 2018 #16
    Trubrit said:

    Welcome to the forum

    And Kim is right, please start your own thread, that way folks can answer your question without running wild on the original posters thread. 

    Here is the link to the forum page where you can post   https://csn.cancer.org/forum/128

    And just a quick answer.  I am Four Years five months out from liver surgery, with no evidence of disease, or NED as we like to call it. So there is LOTS of hope for your hubby. 

    Tru

    You know, I think I just

    You know, I think I just realized that maybe you are saying ablation is also a surgery that can "cure", that when they say only surgery can cure, it is ONLY resection.