No surgery, so far, so good

kbdarnall
kbdarnall Member Posts: 30
in Esophageal Cancer #1

My husband just turned 72 years old. And what a great birthday present. :) PET scan and endoscopy showed no evidence of cancer. 

On December 6, 2017, he had a 5 cm mass, Barrett's type adenocarcinoma at the GE junction. Endoscopic ultrasound showed no evidence of lymph node involvement (T3N0), Stage 2b.

In January 2018, he began treatment. The plan was 6 chemo infusions (carbo/taxol) and 30 doses of radiation (IMRT). The last radiation was cancelled because my husband was gravely ill. He was unusually sleepy and confused. I thought maybe it was a stroke. Doctor told me to call 911. EMTs took him to the ER for symptoms of "sepsis." Ultimately, he was diagnosed with “radiation-induced-pneumonitis” from the cancer treatment. Taxol was the main culprit. Initially, he was treated with massive doses of antimicrobial drugs, for treatment of possible lung infection. My husband improved greatly after he got massive doses of steroids. He had "inflammation" not "infection." 

During late Feburary 2018, my husband was hospitalized 10 days and was on a breathing machine for 5 days. The hospital discharged him to a nursing home where he spent 2 weeks.     

The next CT-PET scan was clear. This was done 12 weeks after the last chemo/radiation treatment. Surgeon wanted him to come back in 5-7 weeks. But my husband decided to forgo surgery. There was no evidence of inflammation or malignancy at the GE junction. There was inflammation at the base of the lungs, but this is clearing up.

On August 10, we got new results. The PET-CT showed no evidence of cancer. Endoscopy showed a "normal" looking GE junction. The tissue biopsies showed no evidence of cancer.

We cherish everyone who contributed to tthis website. Your comments helped us talk to doctors, with real stories from real people. Esophageal cancer is very hard to understand and very scary. I am so grateful to everyone here. My husband's next PET-CT will be in 4 months. You can expect an update.  

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #2
    Glad to Hear It

    Hello,

    I'm glad to hear you guys got a clean test.  I know you guys have been through a lot and it's great to see you actually catch a break.  Hopefully, this keeps up and you can enjoy many years of good health.

    Best Wishes,

    Ed

  • De05m
    De05m Member Posts: 7
    edited August 2018 #3
    Congratulations.. hope he is

    Congratulations.. hope he is NED for years to come do check our alternative nutrition for ur husband , my mom is diagnosed with stage 4 but i have hope and faith in god , she is on weekly chemo placitaxel-cisplatin combo( usually taxol is given with carboplatin ) hope my mom gets a NED response soon, btw do we have to wait in weeks for doing pet scan ?? Or it can be done immediately post last chemo I have read we need to wait for few weeks for pet scan or we get false positive results 

  • PaulT
    PaulT Member Posts: 10
    edited August 2018 #4
    PET Scan

    De05m,

    If your mom is just on Chemo she does NOT have to wait to get a PET scan. If she was getting radiation then they like to wait several weeks after the last treatment to avoid false positive. All the best, Paul

  • De05m
    De05m Member Posts: 7
    edited August 2018 #5
    Hi thank you for the response

    Hi thank you for the response ... Doctor told us pet scan wud only be done after 9 chemo let's see hope he changes his view n does it after 6cycles so that we can see how medicines are working... 

  • kbdarnall
    kbdarnall Member Posts: 30
    #6
    De05m said:

    Hi thank you for the response

    Hi thank you for the response ... Doctor told us pet scan wud only be done after 9 chemo let's see hope he changes his view n does it after 6cycles so that we can see how medicines are working... 

    Timing of PET scans

    You want reassurance the treatment is working. There's medical and coverage issues regarding "when" to scan. Is she tolerating treatment well? Ask the doctor about pros and cons of doing PET too early or too late. Is 6 weeks enough time to see a difference? PET-CT scans are expensive. Perhaps the doctor is worried about future coverage. For example: CMS issued a memo in 2013, that Medicare would cover only "3 scans after the completion of initial therapy..." additional scans would be "...determined by local Medicare contractors."

    I don't know if CMS has "rules" about frequency of scans prior to completion of treatment. You might call a plan representative before the next doctor's visit. My husband's oncologist changed his mind. First, he said we would alternate between CT and PET scans every three months. We also discussed the plan with our insurance carrier (Blue Cross, Blue Shield). The doctor then decided he would order the next PET scan in 4 months. 

    You should pester the doctor with questions until you fully understand timing issues regarding the next scan.  

     

  • De05m
    De05m Member Posts: 7
    edited August 2018 #7
    kbdarnall said:

    Timing of PET scans

    You want reassurance the treatment is working. There's medical and coverage issues regarding "when" to scan. Is she tolerating treatment well? Ask the doctor about pros and cons of doing PET too early or too late. Is 6 weeks enough time to see a difference? PET-CT scans are expensive. Perhaps the doctor is worried about future coverage. For example: CMS issued a memo in 2013, that Medicare would cover only "3 scans after the completion of initial therapy..." additional scans would be "...determined by local Medicare contractors."

    I don't know if CMS has "rules" about frequency of scans prior to completion of treatment. You might call a plan representative before the next doctor's visit. My husband's oncologist changed his mind. First, he said we would alternate between CT and PET scans every three months. We also discussed the plan with our insurance carrier (Blue Cross, Blue Shield). The doctor then decided he would order the next PET scan in 4 months. 

    You should pester the doctor with questions until you fully understand timing issues regarding the next scan.  

     

    The thing is my doctor doesn

    The thing is my doctor doesn't answer all the questions properly when we visited him he said these days there are no sideeffects as there are premedications and we understand sideeffects within 1-2 treatments... In india one huge problem is lack of knowledge, the doctor says her general condition is good and she is tolerating treatment well,  the 6th chemo will be most probably this week, she started almost 2months (we had to extend a few sessions after 14days because her CBC showed counts on lower side not low but better safe than sorry, she has diarhea post chemo she takes 3 day course of ciplox it's good if not then it's extreme weakness doctor now says don't take ciplox but lomotil ).. doctor said If symptoms got better means she is doing well.... We will go for another opinion ....he doesn't answer the questions and just avoids it we didn't even knew the name of medicines since am so curious o checked out... I asked him about why RDW is on rise he is like we don't see all this we just c hb, wbc & platelets 

     

    More than reassurance i want my mother to be fine I pray everyday for her recovery she says she is sure she will be fine so I believe her more than i believe anyone...

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