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Rare cancer with a rare pathology report

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi everyone:

I posted the following on facebook in Don's Updates and rather than try to rewrite here, I will just copy what I posted there. It's hard to explain what is going on in writing but I did my best.

FEC and Hugs,
Judy

Geez, I don’t even know where to start. We have met with the surgeon (Dr. Reddy, UofM) and the chemo onc (Dr. Chandana, WMCC) and radiation onc (Dr. Nigrin, WMCC) and they have told us that Don’s pathology report is extremely rare (UofM has seen it once and WMCC has never seen it). There will be no more surgery, at this time there will be no chemo and they are not sure if radiation is a viable plan or not. The positive margin was not at the resection area, it is completely around the tumor area on the outside edge of the removed esophagus. This is called a circumferential positive margin.

Don has already received the amount of radiation that would normally be given someone, but they are checking to see if there is any way he could have additional radiation. Michigan does not have a lot of positive things going for it right now, but we do stand out in the medical field. One of the worldwide top radiation oncologists is at UofM and they are sending Don to him for a consultation. That doctor will then gather his team and consult with the radiation team at WMCC and see if there is anything that can be done. This will be our second opinion and we are fortunate to have these experts right here in Michigan and won’t need to travel somewhere else. They want to act quickly if anything can be done.

The area that is the problem is a very tight area – the new “stomaphagus” runs through the middle of where the heart, lungs, and trachea are located and this is exactly where the positive margin is. This area has already been radiated and chemo will not work there. They have explained to us that even if they do come up with a plan, it will be a very high risk plan and we will need to really think about it. We will wait to see what they may come up with and make a decision at that time. UofM is one the top hospitals in the US to deal with EC and they perform hundreds and hundreds of these esophectomies yearly so for sure Don’s case will go in the ‘record book’.

Worst case would be ‘just wait and see what happens’. Don would be monitored very often and very closely. This is an extremely rare and aggressive cancer and Don now has an extremely rare pathology report – and we all know Don is a rare, wonderful man. I would be willing to bet that even in the worst case scenario, Don would be one of those rare statistics, after all – someone has to be in the 1% class right? We remain positive and Don is getting stronger each day and the coughing is getting less and less. He continues to amaze me with his strength and attitude.

We would ask that if you have heartburn, acid reflux, or indigestion – please insist that your doctor do an endoscope to be sure that you are not experiencing the symptoms of esophageal cancer. Though it is a rare cancer, it is the fastest growing cancer in the United States with a very grim prognosis, and they don’t know why – they just know it is. The prescriptions these doctors give for heartburn, acid reflux, etc only cover up what may be a very serious situation. Please help us spread the word on esophageal cancer and the possible dangers of anti-acid medications.

cindyruggs's picture
cindyruggs
Posts: 26
Joined: Jan 2012

Judy,

I am sorry the pathology report came back with this rare finding. I will be praying for wisdom and discernemnt for the doctors, and for you and Don. We all know a positive attitude is great medicine, thrilled to hear Don is still positive and hopeful. I agree with you, someone has to be the 1%. God bless you both!

chrissiebass
Posts: 60
Joined: Apr 2011

I did not see this on facebook, but am at work right now, just wanted to let you know I am thinking of you both...

chrissie

paul61's picture
paul61
Posts: 1121
Joined: Apr 2010

Judy,

I know that the series of meetings that you and Don had with your medical team must have been difficult to experience. But it is good to hear that they are sending Don's case to someone that has an excellent reputation in the cancer treatment community.

I could tell from taking to Don that he is one of those guys who strongly moves forward with what needs to be done. I can hear him saying "OK, let's understand what the plan is and move forward".
I will be hoping and praying for the best possible results from your meeting with your radiation oncologist.

Prayers and hugs coming your way,

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!

bingbing2009
Posts: 179
Joined: Feb 2011

This is not the news I wanted to hear. I'm sure this has been shock for you both. You both have such a wonderful attitude, and your great personalities come across so strongly both here and on FB. I feel as if I personally know you instead of just knowing you through these places. Like you, I hate this cancer!!!

Stay strong, keep the great attitude and strap yourselves in for the what appears to be a roller coaster ride. As always, I'm sending love, hugs, prayers and positive mojo your way.

Melinda

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

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

Judy,

Not what I expected or wanted to hear. I can only imagine how hard it was to hear this news for Don and you. Thank God you live where you do and can get the best treatment possible from some of the best in the world! I know you guys will face this challenge with the same sense of determination and grace you faced the surgery with. Thank you for letting us share your battle against EC and your ups and downs along the way. Here is hoping you have many many more ups then downs as you move forward.

As always your in our thoughts and prayers daily.

Dave

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

Judy and Don...

We're hangin' there with you, will keep praying and hoping for the best outcome.

Gerry

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

I think you said it best, Judy. Please know you and Don are in my prayers. You're absolutely right....someone has to be on the good end of the bell curve and be that 1% and it sounds like Don may be just the guy to do it. Sending you hugs from MN.
Rita

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Oh Judy!

This is such unexpected news. I am sure the doc visits were mind numbing. Take a bit of time, have a good cry, step outside and scream FEC at the top of your lungs, and then pick up the pieces and face this new challenge with the same grace, courage, and determination that you guys had facing the last round.

You and Don are both unique people and I LOVE your SPIRIT! We are here for you, Judy.

and don't forget, you are the one that brought the info to us - cursing is healthy :)

FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC FEC

but Love & {HUGS} to you both

TErry

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

What a lot for you both to have to take in! Why do they think chemo won't work in that particular problem spot? I'm so glad Don's healing and strength building is going well. And it's wonderful you have the expertise to help advise you right in your area. I'm praying for the best advice and choices and peace for you both as that transpires.
YOU ARE THE 1%!!
Angie

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

Truly disgusting path report. But everyone is different, so whonoze what's gonna happen. Of course our prayers are with you. But I could tell from the photograph that this Don guy would be a "troublemaker". Hopefully he can make trouble for the cancer and not vice versa.

Take care, both of you. Glad that he's getting back some strength and clarity. And once again, I repeat... ARRRRRGHH.

--Jerry

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I just don't know what to say. I totally didn't expect this report. I did not see it on FB either, but then I haven't been on the computer much today. Well, if any two folks can come out smelling like beautiful roses, it's you two! I was going to ask what the heck FEC meant, but then I figured it out. Duh. I agree - FEC.

(Judy, I really suck at that wacky scrabble game! I can't even think of 3 letter words - is FEC a word?

JaneO's picture
JaneO
Posts: 42
Joined: Dec 2011

I am so sorry to hear the latest about Don. We just can't predict how or when this beast is going to show its ugly head. Hang in there and stay strong. Have you thought about getting other opinions outside your area? If Don isn't in any active treatment, maybe you could send is information to other experts across the country. MD Anderson, Dana Farber? Just an idea. We are praying for you and Don.

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Judy,

I too am sorry to hear of the pathology report, but no reason to lose hope! I know that you and Don together as a team can face any challenges that may lie ahead.

I did want to write and encourage you to ask your doctor's about Proton Therapy. This is a relatively new technology, but it is being used in places like MD Anderson and our cancer center University of Pennsylvania. Here is an excerpt about how it works.

"There is a significant difference between standard (x-ray) radiation treatment and proton therapy. If given in sufficient doses, x-ray radiation techniques will control many cancers. But, because of the physician's inability to adequately conform the irradiation pattern to the cancer, healthy tissues may receive a similar dose and can be damaged. Consequently, a less- than-desired dose is frequently used to reduce damage to healthy tissues and avoid unwanted side effects. The power of protons is that higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs."

I am including a link to the website. There you can see which hospitals have proton therapy and those that are building facilities. I see they are building one in Flint MI. If your current doctor's are not up to speed on this, you may want to call MD Anderson or one of the other hospitals and have them review Don's case.

Website for proton therapy - http://www.proton-therapy.org/backgrou.htm

Hugs,

Niki

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Judy:

Boy, this just plain SUCKS!! It’s obviously not the final diagnosis or prognosis, but I just hate it when the experts are stumped! I think it’s HUGE that you’re in the land of the giants when it comes to treating EC, so don’t you dare be discouraged. I get the impression that that’s not in your or Don’s nature, but remember that we’re all here for you and our energy is beaming out to Michigan to you. Take heart, be strong, and believe that this will work out fine in the end.

FEC big time,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

Hi Judy and Don,
How I too wish that you were not the 1%.
You both have a wonderful attitude and there have been lots of
positives too of late, so please, please don't lose hope.
All of us are here for you and I am sure that we will all come
together to pray for Don. Miracles do happen.

“Again I [Jesus] say unto you, That if two of you shall AGREE on earth as touching any THING that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.” (Matthew 18:19,20)

Take care of each other.
Love and hugs,
Marci xx

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you - each one of you - your replies of encouragement, friendship, and support are appreciated more than you know.

The shock has worn off and we awaiting the plan from the doctors to see where we may go from here.

I remember my first post and how I thought I might not have found the right group to help us - WOW! I could not have found a better support group than you are. I see so many new names; they just keep coming. I know they are in great hands here also. Never in a million years could I have guessed the twists and turns of this cancer. And never in a million years could I have guessed how much each of you would mean to us.

God Bless You All!

Love,
Judy

Guigna
Posts: 71
Joined: Feb 2012

But that's what's happening to my husband too. Doctor assured us there were "clean margins"

And I am so glad he has the J tube because without it he'd be dead. He has a stent in which opened his pullup for a bit, but his symptoms in the last couple weeks suggest to me that the horrible beast is closing in on him on the ends of the stent.

the only way any of this makes sense is if one remembers that the cancer wants him dead. WHy else would such a strong, healthy man, with a positive attitude have all these troubles?

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