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2 hot spots on a PET scan post an Ivor lewis - any insights please -

ECAustralia1
Posts: 2
Joined: Feb 2012

I spent last night reading your postings and cried for all you - both the success stories and the ones who did not make it. It is such a cruel evasive cancer. I live in Melbourne Australia and EC is very rare down here hence my internet search for help and information.

My dad was super fit, never smoked, skied in the USA for 6 weeks every year, is a great bloke but he also had a Barrettes esophageus.

Dad was diagnosed with a stage 3 tumour of his esophageus in August 2011.

He endured 7 weeks of chemotherapy and radio therapy and then had a complete removal of his esophageus via the Ivor lewis method on December 19th.

Please bear with me, I am an accountant and have no medical experience in these matters let alone describing them.

His recovery from what was a very brutal surgery has been good – getting food down was a bit tricky at first and he did have 1 dilation 3 weeks ago which has helped. He is getting his fitness back and is in overall good spirits.

My understanding was that my dad’s tumour was a T3, N2 and when diagnosed in August 2011 was a M0.

We always knew dad would have to have followed up chemo as an ‘insurance policy”. It has been very emotionally and physically painful journey for my siblings and mum – we are a good and strong family but dad’s situation has been very hard.

Dad had a PET scan yesterday and the results have sent me spinning. 2 hot spots were detected being 1 node near his kidney and 1 node near his lung. There is no evidence of any cancer cells in any of dad’s organs. I have no other details on the extent of the nodal changes.

His oncologist said he was unable to conclude as to whether they were nodal or whether they were nodes that had been inflamed from the surgery. I understand the Ivor Lewis is very invasive.

For the most part I have been very strong about dad’s surgery and treatment but all of a sudden I am over whelmed with fear that it has now spread and cancer will eventually get dad. The oncologist said this next round of chemo had a 50% chance of curing dad i.e. getting rid of all cancer from his body, assuming these 2 hot spots were cancer and not inflamed nodes from the surgery. Does any one have an experience in this area? Are hot spots usual 2 months after surgery and 3 months after end of a radio / chemo regime? Any experience in chemo after an Ivor Lewis? I would be ever so grateful for some insight from your experiences.

I understand my Dad’s next chemo regime will be a mix of 5 fluorouracil and epirubicin for 21 days straight via a pump for 3 months.

While I am very concerned with this latest news, I am acutely aware that my dad’s situation is positive relative to others – I weep for you all and am indebted for you sharing your stories. It has helped me feel I am not alone down here in Melb Australia dealing with EC. I sincerely wish each and every one of you health and happiness.

Love ECAustralia1

PS if I can be of any help in giving my experience with dad’s recovery from the Ivor Lewis including starting solid food again and the physical impact pls let me know – there are some things that worked really well for dad that we stumbled on.

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

Hello and welcome to our little EC family. I am sorry that you find us under these difficult circumstances. I am happy to hear that your Dad's surgery went well.

I had the same surgery (Ivor Lewis) a couple of years ago. When they examined the lymph nodes taken out during my surgery they found positive cancer cells in one of the 22 nodes they removed. My surgeon recommended post operative chemotherapy. I had six rounds of Cisplatin, Epirubicin, and 5 FU. I received an infusion of Cisplatin and Epirubicin every 21 days for 18 weeks and I wore a personal infusion pump that delivered the 5 FU 24x7 for the 18 week period.

I have to say that chemotherapy after surgery is difficult. Our digestive system is already somewhat compromised as a result of the surgery, and chemotherapy is very hard on cells in the digestive system. But your Dad's oncologist should have a number of support medications to help your Dad deal with the side effects during chemotherapy.

One of the most important things to keep in mind with post surgical chemotherapy is adequate hydration. Because our eating pattern needs to change post surgery to eliminate drinking much liquid with meals; and we need to eat 7 or 8 times a day to get enough calories, it is difficult to drink enough liquids in between the meals to maintain adequate hydration. I found that if I scheduled IV hydration two days after I had received an infusion of chemotherapy drugs, the fatigue and nausea side effects were greatly reduced.

My oncologist does not use PET scans as part of my follow up. He uses CT scans with contrast. But I have read a number of postings on our board that indicate that PET scans can provide a number of "false positives" related to other physical conditions like inflammation.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Paul:

For what it's worth, my surgeon also doesn't use PET scans as part of his follow-up, but only CT scans with contrast. He says he only prescribed a PET scan if the CT scan indicates a problem area.

Bob
T1aN0M0
dx 8/03/11
MIE 9/23/11

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

CT's here as well. Doc will only order a PET if the CT indicates there might be a larger problem.

Terry

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Thanks for sharing- i too am having a hell'ova a day with my mom's trip to the ER today. She had MIE back in November and already there are some "spots," which the doctor also said mya be post-op inflammation, but certainly today there were spots nowhere near her surgery site :(

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