A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 9 of 9 FirstFirst ... 789
Results 81 to 85 of 85

Thread: Navigating Day to Day Life w/stage 4

  1. #81
    So got my scan results on Thursday. The Dr. said it was all good. My cancer is responding well to immunotherapy. When pressed about the 5 year mean survival rate and the outliers and such he said I was already one of the outliers since my cancer was responding so well.

    A separate issue has come up over the past few months where I am REALLY easily out of breath. Like I can't get enough oxygen into my lungs when I just simply go down to get the mail. So with the pet scan results showing "Since January 6, 2017 increasing bilateral patchy densities in the lung, possibly inflammatory or decreased inspiration." But since I'm having the breathing issues which we were able to reproduce at the hospital, he opted to skip treatment and have a CT scan of my chest. I waited all day for the scan results. There was some sort of a mix-up where they couldn't find them and then when it was nearing 7PM I asked if they had forgotten about me and low and behold... out came the Dr. They HAD forgotten about me. He said usually they only send the scan results back if there was a problem so there was no problem and I could go home. He set me up with an appointment in the city to see a pulmonologist on the 20th. But my main thing was I was Sooo happy about the scan results.

    Fast forward to today when the scan results were just posted to my portal where I can see them. Of course I'm no Dr. but I wish I had seen his before I saw him because I would have had a LOT of questions regarding his optimism. Here's what it says in the summary:

    "IMPRESSION:
    1. Since January 6, 2017 increasing bilateral patchy densities in the lung, possibly inflammatory or decreased inspiration.
    2. Small focal activity at the right base without CT correlate. Consider dedicated CT of the chest for better evaluation if clinically indicated
    3. Increasing activity in the left particular and left suprahilar lymph node, possibly malignant
    4. Mild increase of activity in a left para-aortic lymph node, attention on follow-up is recommended."

    So you see, it seams to me there is additional cancer present and all is not just peachy. If the cancer is growing and continuing to spread why tell me it is responding well to immunotherapy? I don't get it. I know I'm not very trusting. But I've caught a lot of mistakes in this process. This just is a total disconnect between what I am reading in the report and what he reported to me in our office visit.

    Am I wrong?
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  2. #82
    Regular User
    Join Date
    Jun 2017
    Posts
    49
    I know that for me when I read and try to interpret (spelling?) test results it always seems worse then it really is so I wait for my doctor's appointment and then look at thé résults after. That being said, No you are not wrong to be mistrustfull because of course you want to know if your cancer has grown/spread. You need to talk to your doctor and hopefully he can set things right.

  3. #83
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,492
    We always recommend speaking to your dr about results. It is easy to misinterpret them. Especially of you do not have prior ones to compare to.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  4. #84
    Spoke to my Dr., He felt that the results were exaggerated. He does not feel I have anything to worry about. He is worried about my breathing issues, so I am going to see the Pulmonologist on Tuesday.
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  5. #85
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,492
    Good call hun
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

 

Similar Threads

  1. Navigating medical providers: GP vs Specialist
    By gme in forum Prostate Cancer Forum
    Replies: 2
    Last Post: 08-26-2016, 09:15 PM
  2. Replies: 4
    Last Post: 10-28-2014, 04:53 PM
  3. Replies: 3
    Last Post: 03-21-2012, 12:23 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •