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Questions regarding follow up

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Larry saw the oncologist today. He said there is very little follow up for this. They plan on a chest x ray every 4 to 6 months and blood work for tumor markers. He siad the gastro Dr will do an endossopy at some point. No scans. This doesn't seem like enough to Larry or myself. What follow up protocol did all of you have?

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Per my surgeon my initial follow up plan was a CT-scan every four months then at two years it would be every six months out to five years post-surgery.  Now at 2.5 years post MIE with a recurrence at 8 months post-op I follow up with my local oncologist.  My oncologist recommends every 4 months but I push it out to 6 months.  I agree that no follow up scans sounds kind of strange, perhaps you can check with the surgeon and see what he thinks?

Joel

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Joel I have a question...Did you have any symptoms related to your recurrence? I have one concern. Larry staed to the dr at tthe end of his radiation in November that his throat was so sore and expressed his trouble swallowing had returned.  The onc said it was due to radiation.Then in February again he told onc that his swallowing was waorse, again onc said it was still from radiation. Then pre surgery pet scan showed enlarged pretracheal node among many other nodes. He had biopsy done of 9 nodes, couldn't get to that particular node. All came back benign so they said they assume pretracheal node is benign as well. Both drs agreed that swallowing was due to radiation. Just after surgery the surgeon said to me that Larry's problem swallowing is very concerning to him. Now both Drs are once again blaming it on something else, now it is due to the surgery. I may just be over worrying, but something in my gut and heart of hearts tells me something isn't right.

South Side Steve's picture
South Side Steve
Posts: 23
Joined: Nov 2011

I'm one year out from surgery and my oncologist has set up a schedule of blood work and scans every 3 months for the first 2 years and then blood work and scans every 6 months until the 5 year mark. I started out with PET scans, but lit up in a few places on the 6 month scan, so he ordered an endoscopy with biopsies. The biopsies came back clean and it was determined the PET scan showed false positives. Since then, I've been having CAT scans. I asked my oncologist about the 3 month schedule and he said due to the agressive nature of this cancer, he wants to be on top of any possible recurrences.

Steve

paul61's picture
paul61
Posts: 1113
Joined: Apr 2010

Laura,

No scans sounds a bit unusual. My follow up routine was a physical exam every six months with blood work to check for markers. CT scans every six months for the first year and a half then moved to annual thereafter. Plus an endoscopy with biopsies annually.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Dad'sfight
Posts: 155
Joined: Feb 2013

Oncologists told us today every 3 months for scans for the 2 years. Every 6 months for 3yrs, if scans are clear. Surgeon told dad the minute he has didficulty swallowing to call because it might need stretched. We had to be worked in today because when I removed tape off j tube it pulled the stitches. Luckily not completely out like I thought, but I felt so guilty all day about it.

Dad'sfight
Posts: 155
Joined: Feb 2013

Oncologists told us today every 3 months for scans for the 2 years. Every 6 months for 3yrs, if scans are clear. Surgeon told dad the minute he has didficulty swallowing to call because it might need stretched. We had to be worked in today because when I removed tape off j tube it pulled the stitches. Luckily not completely out like I thought, but I felt so guilty all day about it.

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Hi Laura,

My recurrence was discovered in the right paratracheal node on my second CT-scan post MIE.  I had no symptoms at all so it was a total shock.  I opted to have the node removed and have had nine nodes double in size and one node with slight up-take on a PET-scan since the recurrence.  The funny thing is on my latest CT-scan a couple of weeks ago there was no change from the previous scan.  I get lots of pain that I have never had before the treatment/surgery but there is no sign the cancer has spread to any organs or bones. It could very well be that Larry’s pain is a result of the treatment or surgery, I would push for the CT-scan at 3 months post-op to put your mind at ease.

Regards,

Joel

Ladylacy
Posts: 484
Joined: Apr 2012

My husband's first primary was laryngeal cancer.  After a year NED they found a tumor at the cervical of his esophagus (second primary) and he had another 35 radiation and 7 chemo.  PET/CT in September was NED as well as endoscopy in October.  Then in January another PET/CT showed a reoccurrence and much larger plus spread to his lung.  Biopsies were done and only option was chemo.  Husband said no more.  So his H&N specialist was doing PET/CT every 3-4 months.  He had 3 PET/CT scans the first year following his laryngectomy.  I would insist on at least a CT scan once every 3-4 months. 

My aunt, who has since passed away from EC, had PET/CT scans every 3 months following her surgery for almost 4 years.

Sharon

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Thank you everyone for your replies. Like I said my gut tells me he needs to have scans. I will insist that he does.

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