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Father recently diagnosed

mattpauls
Posts: 2
Joined: May 2013

I never thought I find myself on one these boards, but it is great to see there is such a willing support group.

My father visited the gastroenterologist in metro Detroit where he lives to investigate some severe reflux, and after an initial endoscope/biopsy detected cancerous cells they ordered a endoscopic ultrasound and PET scan be done yesterday and today.  After the EUS, the gastro doc gave him a staging of T3 (spread through all layers of the esophagus tissue, but not into adjacent organs) and N1 (spread to 1 or 2 nearby lymph nodes) and based upon that suggested he is a cusp candidate for surgery.  The gastro docs are associated with Beaumont Hospital system in Detroit, which is generally a high-quality hospital, but not a comprehensive cancer center and given what we've read about EC and how rare it is, we'd be well-served to visit a comprehensive cancer center and as such we are trying to get an appointment with the University of Michigan.

So far, the only feedback we've gotten is from the GI docs, but they are not oncologists.  The strange this we keep hearing from U-M is that they insist that his first visit/consultation ought to be with a thoracic surgeon who will determine if he is a candidate for surgery before he meets with a team that would include an oncologist.  This seems very odd to me, but was curious what others on this board have experienced.

To make a real estate analogy, it seems like asking a real estate agent whether it makes more sense to buy or rent.  I don't imagine the thoracic surgeons have the most wholistic view on treatment options (chemo/radiation, etc.).  It just seems you'd want an oncologist to weigh the treatment options and recommend one rather than just see if one of them (surgery) will work.  Amy I crazy?

Also, does anyone have any familiarity with Proton Therapy?  I've read that this treatment is available at only a limited (but growing) number of facilities in the country.  Does anyone have any experience with this?

Any advice or experience on navigating this confusing situation would be appreciated.

 

mattpauls
Posts: 2
Joined: May 2013

After reading more on this forum and elsewhere on the internet, I get the impression that many EC patients with "locally advanced" tumors like my fathers (T3, N1, M0) get chemo/radiation BEFORE surgery (hopefully MIE) but I am not clear on this.  Any experiences with similar staging would be appreciated.

Raphael
Posts: 7
Joined: Apr 2013

My Dad was also recently diagnosed with locally advanced cancer, although in his case no lymph node involvement. I live in Australia and it seems to be the standard here to treat with chemo and radiation prior to surgery.  If all goes well with the treatment my Dad will probably not even have surgery as he is 78 years old and he has been advised by the oncologist that the risks and reduction in quality of life outweigh the extra insurance surgery may give that the cancer would be cured. It seems to me that the medical team are all on slightly different pages around this.  The surgeon promotes surgery as the gold standard, the oncologist agrees but to a lesser extent providing reasonable hope that the treatment alone can cure and the anaesthetist believes that surgery would only give about an extra 10% chance of cure on top of treatment.  The one thing they all agree on though is that treatment prior to surgery provides the best chance of cure.

Jen 

JKGulliver
Posts: 82
Joined: Apr 2013

University of Michigan Ann Arbor has a good reputation but I also think the recommendation to see a thoracic surgeon is odd.  Thoracic surgeons are trained in doing surgery on the esophagus, among other organs, but this seems like a recommendation that comes from a hospital/clinic NOT specializing in EC.  I strongly urge you to seek another faciity. 

You are correct about the limited availability of proton therapy.  Here is a map showing the places that do this type of therapy:  http://www.proton-therapy.org/map.htm.  It looks like there is a facility in Flint.  http://www.mclaren.org/ProtonTherapy/ProtonTherapy.aspx.  The advantage of proton therapy is that it can target a specific area without affecting other organs.  Patients are said to recover more quickly, too, from proton therapy.  I do not have personal experience with this therapy.  We researched it and inquired about it.  By the way, don't bother trying to talk to an oncologist about proton therapy.  Only a radiation oncologist will know what you are talking about.  For our Dad's stage, proton therapy is appropriate.  It is very expensive.  Call your medical insurance company first.

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

My husband was diagnosed the same, T3N1M0. Everything moved so fast, we were reeling. He had his first Ct and xrays at DMC, then his endoscope and EUS at Botsford. Ultimately he had his chemo at radiation at Karmanas at DMC and his surgery at U of M. We did that because of the 2 hour round trip to U of M. I agree in hindsight to see the surgeon first. U of M is world reknowned for their advanced treatment of EC. Dr Orringer is retiring soon, however all of his partners are wonderful and have been there for years. You will see as you move through the treatments, the surgeon is the one in charge.. I would meet with the thoracic surgeon first, he or she will guide you through this. Good luck and keep us posted. 

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

I believe the reasoning behind suggesting the surgeon first is because at U of M it is a whole team that works together oncologists, radiologists, and surgeons. The surgeons opinion does matter in your treatment. The location and size of the tumor etc. U of M also has many clinical trials . Google their esophageal cancer treatment center. 

servman86
Posts: 8
Joined: May 2013

I am a 14 year survivor of stage III EC. I too had lymph node involvment. My treatment was managed by my oncologist. He referred to a surgeon and they used a team approach. I was treated at Case Western University Hospital, Ireland cancer center in Cleveland, Ohio. My oncologist was 74 years old at the time of my treatment and obviously has since retired, as has my surgeon. They were amazing Drs. My gastroenterologist Dr. Amitah Chak is stil there and again is an amazing Dr. My treatment consisted of radiation, followed by surgery (Iver-Lewis pull up) this included removal of approx. 30% of my stomach and 60% of my esophagus. This then was followed up with 6 months of chemo (Cisplatin and 5FU. I thank God that the Dr. that did my original diagnosis referred me to the right place. Not only did he advise me where to go, but he advised me where not to go. I wish you all the best

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

I'm Mattpauls' mom.  My husband, Clint, and I have had a couple of local consultations and today met with Dr. Susan Urba, Oncologist at the University of Michigan.  On Thursday we meet with Dr. Orringer (renowned for THE surgery) and Dr. Hayman (radiologist).  Dr. Urba couldn't give us a certain course of treatment before our seeing Dr. Orringer.  She said the normal course of treatment assuming he is currently a surgical candidate would be carpoplatin and taxol weekly on Tuesdays and approximately 6 weeks of radiation, then a recovery period before surgery.  She had him sign permission for HER2 testing in case he wants to participate in a clinical study for Hercepton if he is positive...Well, if he is positive we'd like to make sure he actually gets herception rather than a placebo so we might need to go elsewhere where they would administer this (I know it is very expensive.  I would hope our insurance would cover most of the cost as it is metastisized to 1-2 local nodes...and I worry about it spreading further with every passing day.)  I was also concerned when Dr. Urba mentioned that he had a slightly enlarged thyroid on one side (but remarked that it is usually not a problem) and a couple of tiny spots on his lung that did not light up...probably scars but she wanted Dr. Orringer's evaluation.  

We would also like to consider having the chemo/rad done in Traverse City Mi  in consultation with Dr. Urba near where we usually spend summers and time year round.  The quality of our lives would be so much better in that we have such a wonderful healing outdoor environment (lakes, dunes, trails, forests) and a great support system up there.  Our children, granddaughters, and close friends spend time with us.  On the other hand, I'm concerned about any more time lags and getting the best quality care.  We are now almost 3 weeks out from diagnosis and they (U of M) is suggesting it might be the end of the month before we get started.  Ugggh!  We would definitely return to Dr. Orringer for surgery.  I did request that they send records to Traverse City and try to get us appointments for next week.

Also spoke to MD Anderson about possible proton therapy.  A local radiologist said no and Anderson asked us to send records (which I will).  I don't want to travel out there unnecessarily though.  I think it's a long shot.

I'd love to hear any comments from those of you who have experience with these issues.  I feel like we have a million balls in the air but no clear plan.

JKGulliver
Posts: 82
Joined: Apr 2013

I just sent this message to mattpaul:  My husband and I just had an extensive meeting with a radiation oncologist and I had the opportunity to ask about proton radiation.  It is offered at the Mayo Clinic in Rochester, Minnesota, which is very close to us.  This is what I found out.

There are 10 clinics in the US that offer proton radiation.  

It is very expensive - about four times the cost as photon radiation, which is the current protocol.  At the current time, it is believed that there is no theraputic difference between proton and photon therapy.  The difference is in the delivery method and the collateral affects.

The advantage of proton radiation is that it is an actual particle, versus photon radiation, which is essentially light, and can be focused on a very specific part of the body.  It is the technology (machine) that generates the beam that allows this focusing.

In photon (regular) radiation therapy, approximately 75% of the dosage goes out the other side of the body, not touching the area of the body affected by cancer.  In proton therapy, virtually zero percent (insignificant amounts) of the doseage passes through the body.  This means a much smaller dose of radiation needs to be given to get the same theraputic affect.

The proton radiation is also delivered in a very different way.  The technology used to deliver the radiation stream can intensify when the affected area of the body is reached.  By this I mean, as the body is hit with radiation, it first penetrates the skin, then moves deeper into the body, finally reaching the affected area.  It takes some micro-seconds to reach this area.  Even these split seconds count, apparently, in collateral damage to the body.  There is far, far less collateral damage to the body with proton therapy.

Photon (regular) radiation counteracts their cruder delivery method by rotating the location of the radiation beam, in affect, encirciling the tumor in multiple rays, versus using a single beam.  Proton radiation uses a single beam at a time.

We have decided not to seek proton therapy.  We are comfortable with our radiation oncologist and photon therapy.  I understand you, completely, when you talk about a healing environment.  This is very important.

The protocol you described for your husband was also offered to my husband - the clinical study with herceptin, carpolatin and taxol.    Herceptin has been used for some time in the treatment of breast cancer.  From what I understand, doctors are finding out that drugs, effective in breast cancer, also are effective in fighting stomach and esophagael cancer.  Herceptin is given when there is already node involvement, but HER2 is very different.  HER2 is given, I believe, to people who have do not have node involvement, yet.  Your husband has node involvement, I believe.  So, I would check that out.  We elected not to be part of the herceptin study because my husband is T2B N0 M0.  So, there is no node involvement, so far.  We are in a different clinical trial, however, combining folfox, carpolatin and taxol with radiation therapy.

I hope this helps you and your family as you seek treatment and further information.

callerid
Posts: 99
Joined: Dec 2012

I don't think Mayo's proton center is open yet.

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

Many of us here know how frustrated you are right now. I wanted nothing more than to "get the ball rolling", and for them to get this thing out of my husband. Larry was diagnosed on September 17th and started his chemo on October 16th. I know it seems an eternity. As long as the hospital in Traverse is willing to do the same treatment it shouldn't be a problem. I would advise that it be a Comprehensive Cancer Center as that is what is needed for this treatment. Larry had his treatment at Karmanos at Huron Valley. They were a wonderful team to have and worked hand in hand with U of M. We walked through the same doors on a daily basis for radiation and the chemo. There team approach enabled any one of them to notice even small changes in Larry and would enable the Drs to do STAT bloodwork on many occasions. Larry had Cistplatin which was rough. I have heard that Carboplatin is a little less harsh. He also had 5FU instead of Taxol. We have put all of our trust in Dr Orringer. I have heard through the grapevine that he has put off his retirement again. He is a wonderful surgeon with an astounding bedside manner. He will draw you a picture and explain every single medical term to you, as well answer any questions. If he doesn't feel you should travel to Traverse he will suggest to you not to. Try not to worry about the HER2 for right now. He may not even test positive for it. Really try to take one day at a time, one step at a time. Some people do fine with chemo with little side efeects. My husband had an awful time, however was not your model patient. He had many problems including getting viruses from the grandchildren, and a fungal infection in his lungs from our bats and waterbirds here in Michigan. Please be wary of the "great outdoors during his treatment. Dr Orringer is going to want your husband to be able to walk 2 miles a day, and make sure he uses his spirometer, which he will give you upon your 1st appointment. They like to schedule surgery for 4 weeks after the end of chemo. Larry's was postponed until late March due to his being too weak. If you have any questions please feel free to email me, or post away on this site. You will find great comfort here.

PS Plan to spend about 3 hours at U of M on your first visit. Make sure you have any results with you, CD's, reports, etc.

Good Luck!

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