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One bumpy year

250xcfw's picture
250xcfw
Posts: 30
Joined: May 2012

As some of you may know I was diagnosed with kidney cancer in May. I had my left kidney removed 4 weeks ago and need to go in and have a partial on my right kidney in a few weeks. This makes for a busy summer.
I went in for an upper GI last week to find out I now have esophageal cancer not related to the kidney cancer. What the hell do I do now! The cancer is in the earliest stage possible thanks to all the scans I’ve had for kidney cancer. I have 2 choices remove my esophagus or a partial with an endo scope. I need to do more research and I’ll let you know what I find.
Thanks
John

5002dblane
Posts: 8
Joined: Feb 2012

Dear William, My husband Tim had Ivor Lewis in Feb 2012. The cancer was removed and found 1 lymp node affected so it was a Stage 2 EC. On the 3rd month after surgery, Tim was deemed not strong enough to have chemo so we are on onservation mode and a CT scan was scheulde in Aug 15th. Tim lost a total of 25 lbs - and he didn't have a feeding tube either. He now weighs 157, not gaining or losing. My main problem is his weight - he has no apetite, he doesn't feel hungry and he can only eat so much.He doesn't have any problems swallowing or dumping or heartburn. It's just he can only eat so much(little) that he can't seem to gain weight. He does eat frequent, small meals - grazing as they call it but still no weight gain. He's back to work full time, 3 days a week, mows the yard and tries to get back his usual routine. Oftentimes, I tell myself that I have so much to thank for as this is the only problem we have - no weight gain and pray that the cancer will not recur. I have read and done all the suggestions on CSN discussion board. Shld I stop worrying? Thank you so much for your advise. ELlen

P.S. I can't seem to navigate well on the CSN discussion board. Is it possible for you to respond to me directly - eware@indiana.edu>

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

John,

When you mentioned a partial removal of the esophagus,I wonder if you might possibility mean radio frequency(RF)procedure? My husband was offered this type of treatment at the Mayo Clinic in FL. It is used for very early cancer of the esophagus and for Barrett's esophagus. They use a special type of endoscope to irradicate the cancer cells every four months for a year. It's a non-invasive procedure which sounded really good to us until they discoverd that my husband wasn't a candidate for it because the cells had penetrated the esophagus too far so the procedure wouldn't work. He subsequently had MIE surgery at the UPMC with Dr. Luketich. Best of luck with your research.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

I was offered RF also and although I was a candidate for it I opted not to have it because they just don't have any long term studies to support it's effectiveness. The longest study is three years and it is only on Barrett's not EC. That along with the fact that they can not tell you for sure if the RF just creates another tissue layer that can conceal Barrett's or EC and make it that much more difficult to detect at the earliest stages. They also talk about managing EC with RF not curing it.

Dave

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

I had a phone conversation with the doctor at Mayo who had a hand in developing the RF procedure and he told me that surgeons who treat EC (He specifically mentioned Dr. Luketich who was my husband's surgeon) would be going out of business soon since RF can control and treat Barrett's before cancer develops. I had to respectfully disagree with him. If he had read the stories on this website I doubt if he would have made that statement.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Until there is some long term research done on RF I know I would not try it to treat Barrett's much less cancer. The Doc's that had me in surveillance for 17 years are some of the top in the country if not the world ( Brian Reed and Patty Blount) and neither is prejudiced towards treatment options. They do however give you, the patient, all of the information available, the good and the bad and leave the decision up to the patient as to which type of treatment to pursue without trying to influence the decision. I felt I had the total information on each type of treatment option. After I had that information I then consulted with an endoscopic surgeon, a endoscopic/MIE surgeon and two thoracic surgeons. Then I made my decision on which treatment and which surgeon. I have not regretted my decision once.

It is important to remember that every specialty is prejudiced towards their own treatment. I choose the treatment option that I believe gave me the best chance to be "cured" of EC once and for all. I Wont live my life in fear and I certainly didn't want to live in fear of "it's not if but when EC returns" which I felt any other treatment option other than esophagectamie would be.

Dave

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Until there is some long term research done on RF I know I would not try it to treat Barrett's much less cancer. The Doc's that had me in surveillance for 17 years are some of the top in the country if not the world ( Brian Reed and Patty Blount) and neither is prejudiced towards treatment options. They do however give you, the patient, all of the information available, the good and the bad and leave the decision up to the patient as to which type of treatment to pursue without trying to influence the decision. I felt I had the total information on each type of treatment option. After I had that information I then consulted with an endoscopic surgeon, a endoscopic/MIE surgeon and two thoracic surgeons. Then I made my decision on which treatment and which surgeon. I have not regretted my decision once.

It is important to remember that every specialty is prejudiced towards their own treatment. I choose the treatment option that I believe gave me the best chance to be "cured" of EC once and for all. I Wont live my life in fear and I certainly didn't want to live in fear of "it's not if but when EC returns" which I felt any other treatment option other than esophagectamie would be.

Dave

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

Hi John,

I too have esophageal and kidney cancer. They are , like yours, two primary cancers meaning neither one has metastisized. My oncologist told me that this situation is becoming more common and they don't know why. William is right, your esophageal cancer will need to be dealt with asap. Lucky thing though, sounds like they have caught it early so surgery will most likely be on the table. I had the ec surgery almost one year ago but was not up to having the kidney surgery until now. As of March, the kidney cancer had not grown at all in one year. As your probably know most kidney cancers are much slower growing than esophageal cancer but still nothing to sneeze at. Don't worry, they, being the doctors are quite capable of dealing with both. I think there is someone else on the board who has these two cancers as primaries. I think its Birdiequeens husband. Try and stay calm . They will most likely give you more info on the esophogus cancer and then you will know what you are dealing with.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

John, I like you had my EC found at the very earliest stage. I also had options between endoscopic treatment and removal of the esophagus. After careful consideration and the wonderful advice of the Doc that diagnosed me (who is a lead research Doc at the Fred Hutch cancer research center and at the University of Washington) I opted for the removal of the esophagus. The reasons i made the choice i did are really very simple. There is no long term study of RFI and its use on Barretts much less cancer. EMR is only good if the cancer is limited to the mucosa wall of the esophagus and hasn't penetrated the next tissue layer. EMR also isn't a sure thing to get all of the cancer as the Doc's can not mark the biopsy site to return to with the EMR. And finally, if the Doc's biopsies didn't hit ever single cancer cell/location in your esophagus you run the risk of having it missed in the EMR and it not being treated at all.

I was fortunate enough that my cancer was detected early enough that I wasn't subjected to any chemo or radiation treatment. Another consideration is you are relatively young and healthy and a good surgical candidate. The Doc's will be lining up to work on you and you can get the very best surgeons available. If you have endoscopic treatment and the EC returns at some point down the road you wont be as young or in as good a physical condition to endure the surgery and may have to undergo chemo and radiation treatment at that time also.

Hope that my limited knowledge and experience are of use to you in your decision making process.

Best wishes,

Dave

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

William, endoscopic-mucosal-resection is exactly what I meant by EMR. The other procedure was radio frequency ablation or RF. As attractive as it is to be able to avoid this serious surgery I believe as you do that at this time surgery is still the "Gold Standard" of treatment for EC. Thanks for adding your research to the discussion.

By the way EMR hurts like hell for a few days. Had it done pre-op staging with the endoscopic ultrasound.

Dave

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Hey FLMO,

I'm with you on what you told your doctor. It would be lovely, as he said, for surgeons doing MIE's or THE's to go out of business, but I wouldn't have been as polite as you.

Whether RF does treat Barretts or not, most of us would like to know at the Barretts stage when we have it and NOT (that's for you Eric!) at the EC stage. If the govt would like to make it compulsory for everyone to have an endoscopy every two years from age 30, then the doctors would be able to stop EC at the Barretts stage. How your doctor can say that when most people on this site are diagnosed with EC prior to even knowing what Barretts was is astounding. Doctors who push their own strategy without knowing what actually works need a rethink

250xcfw's picture
250xcfw
Posts: 30
Joined: May 2012

Thank you everyone for all the great information. I have a pile of notes I can now take to the Dr's. My main concern is having two cancers at the same time. Which one is more important? I more than likely won't be able to do chemotherapy with only a partial kidney left.
Thanks everyone once again. Knowledge is king.

John

jtebo1955
Posts: 46
Joined: Apr 2012

Wow I thought I was a rare case having 2 cancers not related to each other. I had my right kidney removed in Oct 2008... And like you the scan showed some thickening of the esophagus in April 2010, dr did a barium swallow and said everything ok. Sept 2010 starting having occasional pain in my esophagus , did a scope found the cancer , stage 3. Oh how I wish I would have insisted on a scope in April. But trusted dr knew what he was talking about. Anyway, my tumor was to large to remove my kidney lapro so had the old fashion way. That surgery was way worse than the esophagus removal. But the way my EC progressed so fast, I would say get on it right away. I'm not sure about the no chemo thing. I had radiation and chemo before EC surgery and 4 more rounds of chemo after. The scan before EC surgery was clean, but after removing 11 lymph nodes 1 tested positive so 4 more rounds of chemo. And that was with just the 1 kidney. Can't have CT scans only PET scans. Wish you the best, I think you are in a good position for full recovery.

250xcfw's picture
250xcfw
Posts: 30
Joined: May 2012

I've been out for one week after my MIE and everthing is going good. Still on a liquid diet with Jtube. All tests were clear and I'm EC free! I just need to deal with my kidney and I'm home free.

John

Bermudagirl
Posts: 120
Joined: Jun 2012

So happy for you.

Sandy

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Great news John. So glad everything is going well
Sandra

250xcfw's picture
250xcfw
Posts: 30
Joined: May 2012

Everything is going good almost back to normal as far as eating and day to day life. My two problems are cough and energy levels. Things I’ve been doing are started walking on day one after surgery, week 4 started working out on weights and week 6 started riding stationary bike? The walking has been going fine but I don’t feel it’s helping much with my lungs and it hurts my back after a few miles. Working with weights has helped my back pain and started putting back on muscle mass to my upper body. Just started riding my bike on Tuesday for just a few minutes and it felt like my lungs were going to explode. So does anyone have any advice on helping lungs recover from surgery or what I should expect? It's hard to get back in shape when your lungs arent on the same game plan.

Thank you for the help and comments.
John

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