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Don met with radiation onc today for second opinion of post op treatment

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

Hello All!

I posted much of this on a reply to William and Mishti on a post Mishti started about her dad, but want to let those of you who didn't see that post know what is going on with Don - I am modifying this slightly so that it only pertains to Don's situation. William and I have an agreement to disagree at times and actually I think that's a good thing. If we all agreed all the time would there ever be progress? A healthy debate can move us toward progress and that is our goal here - to someday have learned so much about this cancer that it becomes an easily treatable and cured cancer.

Don's update 9 May 2012

After meeting with Dr. Hayman today, we have come to the conclusion that Don will receive no further treatment at this time. Don did not have any positive nodes - in fact, two of the nodes showed response to treatment and were basically destroyed.

They have explained to us just how rare Don's situation is - his distal circumfrential radial margin tested positive - not the nodes. The area that is likely to have cancer sits in between the lungs, heart and trachea - to have radiation again would likely cause more harm than any benefit to be gained. Don had a very poor response to treatment the first time and really had just about all the radiation a person would normally have. Don's poor response leaves the doctors to say to us "If it didn't work the first time which is the optimal time, it isn't likely to have much of an affect a second time in the same area which is very high risk." Also the first time around the dose was higher than what it would be this time.

Multiple doctors have explained that at this point, chemo would be of no help and neither will radiation. Now, if the cancer is active and goes into another area or organ, they would determine at that time what could be done, but, of course, we know that at that point, Don would then be classified Stage IV.

Ours is certainly a very rare case and we have now consulted with five different doctors as to the path forward. They have each looked at the data available and have consulted with each other and the best scenario offered was possibly 8 more radiation treatments which would be very moderate and if a fistula (hole) were to happen to the lungs, heart or trachea that would likely mean death - therefore, we are choosing not to pursue this avenue and all of the doctors seemed quite relieved with our decision.

Obviously this is not something we wanted to hear and I know it was hard for the doctors to 'get real' with us about this. Dr. Hayman said that some people may want to proceed with the 5-8 radiation treatments, but if it were his family or loved one, he would advise against it due to the high risks associated with this particular situation.

In any event, we are contributing to the knowledge base of esophageal cancer and hopefully, someday soon, future esophageal cancer patients will reap the benefits of the seeds we each sow today.

We are thankful and grateful for any information or advice given to us and I do take the time to research all information I can find regarding this stupid cancer - so thank you for passing info along.

As someone has stated before, we are a statistic of one and though I prefer to have my eyes wide open, I know that someone has to be the 1%. So for now, we will carry on and pray and hope for the best.

Many of you know that Don broke away from his normal 'very frugal' self and bought himself a new Harley Davidson and we have a trip to Sturgis, SD planned for later this summer and we are very excited about that. He is buying some 'bling' for the bike and that let's him 'play' with the bike until the day comes that he is released to ride it, which is June 22. Looking forward to knees in the breeze and seeing some of our beautiful country.

Hugs and FEC,
Judy

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Judy,

I know today must have been a difficult day for both of you. I am sure that coming to the decision that you made was not easy. I think it is the decision I would have made if I were in a similar position. I think the medical creed of "first do no harm" might apply here.

But none of us really knows what is ahead. The radiation could have continued to work and Don could have many more years without issues. The statistics don't really tell us anything about ourselves.

Sometimes when I am having a particularly bad day; when I am not feeling well, or I have developed a new pain that I can't explain, the thought of "recurrence" is always there. When I start to give in to the fear that comes with the unknown, I ask myself; "if this really were the last few weeks of my life, would I want to spend it in fear or would I want to live life to the fullest with no regrets?" That tends to get me back on track. At least until something new shows up again.

I think you and Don have made the brave and right decision for the two of you. Plus, you have given yourself time to continue to explore options. The decision to do no more treatment for now can be changed if new developments or information becomes available.

It is sometimes hard to leave things in God's hands but at the end of the day that is what we all need to do. We keep thinking there must be something else we can do. But sometimes we just need to "let go and let God"

I will be praying that you and Don have a wonderful summer with lots of fun on his new toy.

With love and hugs..

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!

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

Hi Paul:

Thank you so much for your support. I love "let go and let God". That is where we are at and we are really at peace with that.

I bought a plaque that I keep in our kitchen that has your Life may not be the party... I think of you everytime I look at that!

Hugs and FEC,
Judy

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Amen to that, sister! I don't have any advice or input for you Judy, but you and Don have endured so much over the past months, I'm so glad you have a wonderful trip to look forward to and are ready to cut loose and really live it up! I can picture you both on the Harley now!

My very frugal mother asked me today if she should splurge on a Coach bag. My advice to her was absolutely! Eat what you want, buy what you want, go where you want, do what you want. Be happy as long as you can. Enjoy every last moment. None of us know how long we have in this physical realm, may as well squeeze as much happiness as you can into every living moment!

Praying Don stays heathy as long as possible! Bless you both and hugs to you!
And FEC!

Love,
Steph

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

Hi Steph!

I hope mom buys that Coach. I feel exactly like you do - do whatever you want while you can. I truly hope that Don and your mom continue to splurge a little - my goodness, they work all their lives for what they have and what they have saved for - ENJOY it.

I've always told Don "You can't take it with you when you" and his reply to me has always been "If you don't go pretty soon - you're gonna be hurtin!" LOL - we seem to balance each other out quite well. I take risks - he doesn't - but it works for us.

Good luck to get mom to buy the purse!

Hugs and FEC,
Judy

a1phil
Posts: 30
Joined: Jan 2012

Your choice is the best choice, if in your hearts you are content that this is best for yourselves. We support you guys and continue to pray and hope for the best possible outcome. Continue to enjoy each other and live life at the present. Our 43 ann. is comming up in july and we plan to live life one day at a time . Best of everything prayers and good wishes oh YES FEC phil& Dianne

mishti
Posts: 24
Joined: Mar 2011

Hi Judy,

I share your pain as we seemed to be in the same boat. My dad's surgery lasted for 8 hours and after going through all that....cancer still remains. All his nodes also tested negative. He has been staged T3N0M0 after the surgery and since he responded well to the treatment , we are going ahead with Chemo. This is not my decision but my dad’s himself. He had a squamous cell carcinoma in the middle of the esophagus making the operation even more difficult. My dad was in Marines , all tuff and strength of the family. It is difficult him so weak and fragile …..My prayers are with you and Don….

Mishti

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

We are pretty much in the same boat aren't we - Don's cancer was adenocarcinoma - so a bit different there. The surgeon said that Don's operation was a tough one also - he said they kind of 'chiseled' it out. I think the radiation must make the tissue pretty tough and when you're that close to the lungs, heart, etc. extra time and caution are needed.

I am so happy your dad can have chemo - quite a few have needed to do that after surgery and are doing very well. I am sure it is difficult to watch someone you love so much who was always the tough one become weak and fragile. This surgery takes a lot out of a person and it does take some time to bounce back no matter how old you are.

Paul had chemo following surgery and he said it was rough but doable. My bet would be that your dad will do well. If I were him, I'd take the chemo also because I know that others have done it and it worked for them.

Please keep us posted on how you and dad are doing - we stay in this together and help each other out when we can, if only to lend and ear. Our prayers are with you and dad and your family.

Hugs and FEC,
Judy

ChaadMN's picture
ChaadMN
Posts: 33
Joined: Sep 2011

Judy,

It sure sounds like to me that you have consulted the right people, and made the correct choice for Don. As someone else said (Paul I think), if new information becomes available, you can re-assess the situation at that time and change things if needed. My thoughts and prayers will remain with Don and yourself.

I hope you both enjoy your upcoming trip to Sturgis. It is a well deserved trip. I look forward to seeing pictures on the facebook site. Just be sure to clean the bugs out of your teeth before taking pictures, as I am sure you both will have an ear to ear grin the entire time you are riding.

As always, FEC.

Chad

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

Hi Chad,

I don't know what kind of bugs we will encounter on our trip, but I'll be sure to post pictures as we go along. We plan to trailer the bikes out there and ride with our friends who have a beautiful motorhome. I am thinking I'll leave my bike home and ride on the back of hubby's new Ultra so I can enjoy the view! (selfish I know, but what the hey!)

Congratulations again on your wonderful news - keep on bringing it brother!

FEC always,
Judy

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

Ahhhhhh! I was wondering if Don was going to make that ride on a bike! Good to trailer it. Our next door neighbor does the same. You two will have a great time! I want to see pics of the bike bling!!!!

I love your outlook and attitude. I also love your humor. You are an inspiration to many. I'm sending you big giant cyber hugs. Stay strong (as ever), and live/love every minute of the day.

Ginny

P.S. Mom's tumor was in the same area as Don's and was inoperable because of it's location. Have you asked about Internal Radiation? Usually comprised of just 4 treatments.

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

Ginny:

I have heard of it, but have not checked in to this. I will do that tomorrow if it rains and I can't work in the yard. I am open to check out and researching whatever we can. It would sure be nice to nip this in bud if possible. Thank you.

I have been thinking about you with Mother's Day coming up and I hope you can not only enjoy the day for yourself, but maybe remember something sweet about your mom as she spends her first mother's day in Heaven. It must be beatiful and I'm sure there is a special place for moms as great as your was. Promise me that you will have least one memory that makes you smile and laugh as you remember mom this year.

Love ya and talk with you soon,
Hugs and FEC,
Judy - I'll send you some pics on facebook - it's easier and I'll even put one for mine. They are both red. Mine is an 883 sportster and his is an Ultra Classic.

monica_sss
Posts: 57
Joined: Dec 2011

Hi Judy,

If you remember my situation with Mom, you'll know that we ran about 2-3 weeks behind Don. All of Mom's lymph nodes also came back negative. The only trace of cancer found was in the itty bitty tumor itself. They have recommended follow-up chemo and she is 100% against it. There doesn't seem to be any hard facts about follow-up chemo, and she has no interest in contributing to the statistics.

Everyone has to walk this path on their own terms. Some choose to collect facts, some prefer to feel "guided", but really we can't judge another's course. Each person has to do what is right for them.

It sounds like you have a fantastic summer planned. Enjoy it to its fullest. This sounds like my kind of trip - no hair styling or products necessary ;) Just live life.

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

You are so right that each must decide what is right for them. There are conflicting reports as we have all seen - so you educate yourself as much as possible, weigh the pros and cons and come to your own conclusion. I support Don 100%.

Your also right on hairdo by helmet! Dewrags are awesome!

Thank you for your support - we sure do appreciate it.

Hugs and FEC,
Judy

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

Radiation and chemo seemed to be the right thing for me, as it shrunk my tumor down to the point where I can eat "relatively" normally. In fact, I've gained 5 pounds. Gotta watch that.

MY hopes and prayers are with you guys, and here's hoping you have more fun than you can possibly handle!!!

I'll be done with this second round of chemo by the end of June, and then I'm flying off to visit family who seem to have migrated to the South East... Tennessee, Mississippi, and North Carolina. All originally from Washington State.

Right now, I'm just marking time, teaching, and waiting for the stinking mouth infection to go away.

Take care (of each other... Naturally...)

--Jerry

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

Judy, You and Don are incredible! Thank you for sharing your adventure with us. I cant imagine how difficult the choice you had to make was. The important thing is that you made a decision and you're comfortable with it! Have a great ride out to sturgis and enjoy every minute of it. It is so good to hear that Don is doing well and recovering so well. As you know the surgery will kick your ass.

Keep up the great attitude and keep on keeping on.

Dave

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

Judy, My situation was not anything like yours, but I never had any radiation at all. My doctor along with others, did a study and determined that radiation on EC patients did more harm than good, so I only had chemo. At the time I was ignorant about EC and didn't question the doctors. It was only after joining here that I learned the protocal for treatment.

I had chemo pre op and after surgery, I had a couple of active nodes so I started post op chemo. Two weeks into chemo post op, my port had to be removed because of complications. At that time my oncologists said that it was time "to let go and let God". I accepted it and put my trust in God. I had my surgery on May 8th ,four years ago and I am still NED.

I haven't had a reoccurance, but pray that if I do ,I can make wise decisions like you and Don, and so many others on here have.

I know Don is enjoying getting his new toy ready for your trip in June. It's nice to stay busy with something you love doing.

Hugs,Sandra

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

from the Cancer boards here. (We do labs on Mondays and chemo on Tuesdays and try to do "normal life" the rest of the week.) But, I have certainly been wondering about Don and you and thought it was time for your follow-up appointment. I'm sorry you have a complicated situation. I love that you have great summer plans and plan on being in the 1%! Just one question--I don't know if it's been mentioned or not. What about proton therapy known as pencil beam scanning? It's done at MD Anderson in Houston and is very precise and accurate radiation.
Hugs,
Angie In treatment BC since Jan 2012
wife of Larry, stage IV EC June 2011

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

I have researched that but I will. We will meet with the chemo onc on the 30th of May and I will ask about that - but I want to check it out first.

Thank you for the info - Ginny has suggested another therapy also that I need to look into.

I hope that you and Larry are doing well - how rare that hubby and wife are in cancer treatment at the same time. I bet the babies are growing like little weeds - can't wait to a new picture of them.

Please enjoy your Mother's Day tomorrow and take some time just for Angie. How are you guys doing?

Love,
Judy

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

double post

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Judy,
Wish the news were different, but when a dr says he would not do the treatment (radiation) if it was his loved one, that is definitely an eye opener. I got permanent damage from radiation to my right lung and don't think I could ever have more right in that area. Don and you have weighed the options and it sounds like you all have made the right choice. Hoping all else goes well and June 22nd comes around real soon for Don to feel the rush of the wind in his hair. As Paul says, let go and let God handle the rest. You all are in my prayers and my hope is that there are many days ahead for you both to enjoy life. Nobody knows what lies ahead so just enjoy what you have right now. You all have done your homework and consulted all those drs, now just do what you all want to do. many hugs and prayers,
Donna70

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

Hi Judy and Don,
I follow your positive, funny and straight forward posts every time I log in and I am praying that your 1% will be our miracle. We so need people like you two.
This site has many special members and as you say, we don't always agree. There is one thing for sure though, we all have each others backs and want the very best outcome for everyone here.
The hospital where Rob had his treatment is in Cambridge , England. It is the Cambridge University Centre of Bio-chemical Medicine and many new procedures and clinical trials are held here. To call it a hospital is a bit small, it's a city really where they do a lot of targeted procedures and radio active nuclear medicine.
I don't know if they would be able to help Don, but I wonder if it would be worth trying to contact their top Upper GI surgeons to ask if they have any new ideas. I can give you the names and the contact details if you would like them. It's just a thought and I hope you don't think I am intruding.
I wish you both luck, love and prayers for your journey and meantime have a wonderful holiday.
A Harley, fresh air and freedom - I envy you..
Hugs and prayers,
Marci xx

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

Hi Marci:

Thank you for replying and yes, of course, I would like to have the names and contact details if you won't mind sending them to me.

We know that medical advances happen everyday and who knows when the thing you have been looking for all the sudden becomes available? We have no contacts in England at all - so yours would be most welcome and I thank you in advance.

I work at Michigan State University in East Lansing, MI and ironically enough the project I am currently working on is the Facility for Rare Isotope Beams; a huge part of which will be nuclear medicine. Our facility will not be open until 2018 but I am so proud to be part of what will no doubt save the lives of many many people all over the world. This will be a worldwide facility in which scientists from all corners of the earth will come and perform their experiments, prove theories and produce medicines.

If by any chance, any of you ever happen to be in the area - we would love to give you a tour of this future facility.

Hugs and FEC,
Judy

Guigna
Posts: 71
Joined: Feb 2012

my husband is about like yours. I couldn't figure out a way to send you a private message, but even though my husband is still undergoing chemo, I believe it's a waste of time. He has a lymph node that is huge, I can see it! between his shoulder and clavicle. The chemo doesn't seem to be changing it very much.
The stent seems to be holding back the cancer that reappeared at the margins though, so even though he can't eat much he CAN eat, he CAN drink and he CAN swallow his own saliva. Thank goodness for that J tube though!
WOuld like to talk to you off the forum if possible, if you know how, send me a message.

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

Hi!

I did send you a private message (you have to go to the CSN Email n the left side of the page and then 'write new message' or whatever it says to do there). Hopefully you will see my private message to you and you can respond. Also, I am on facebook - Judith Reed (Barrington). We have the CSN group also on facebook, if you would like to be part of that group.

I would love to talk with you, feel free to contact me anytime and if you would like, I can send you my cell number.

Hugs and FEC,
Judy

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

Thank you for your newsy post.
I knew you would be something special and how I wish that I was young enough to work in a facility where life changing studies will take place. I envy you.
Thank you for your very kind offer of a tour, and although I would love to come, it is unlikely that I will find myself in Michigan in the near future as finances and time probably won't permit it. In fact I am saving to take my little grandchildren to Disney. I took my Mum and Dad and my children on a two centre holiday thirtyfive years ago and also visited Clearwater. My dream is to take my grandchildren and my daughter and her husband there and I am praying that Rob will be well enough soon.

The information that might be of interest to you is as follows:
Mr Richard Hardwick MBBS, MD, FRCS (Head of the Upper GI Team)
Research interests:
Laparoscopic Oesophagectomy.
Quality of life.
Barretts Oesophagus.
Current NHS and /or university posts:
Consultant Upper Gastro-intestinal and Laparoscopic Surgeon, Addenbrooke's Hospital NHS Trust, Cambridge
Year of first medical qualification:
1986
Current membership(s) of professional, national and regional bodies:
Royal College of Surgeons of England
Association of Upper G.I Surgeons (AUGIS)
International Society for Diseases of the Esophagus (ISDE)
International Gastric Cancer Association (IGCA)
British Oesophagal Group (BOG)

Contact Details
Telephone number to make a private appointment:
01223 719322
Private secretary:
Toni Race

Mr Peter Safranek BSc, BM, MD, FRCS(Gen.Surg)
Special clinical interests:

Oesophageal and Gastric cancer Surgery, Laparoscopic Anti-Reflux Surgery, Laparoscopic Achalasia Surgery, Laparoscopic Cholecystectomy, Laparoscopic hernia Surgery, Upper Gastrointestinal Endoscopy
Research interests:

Minimally Invasive (Laparoscopic and Thoracoscopic) Oesophagectomy
Current NHS and /or university posts:

Addenbrooke’s Hospital NHS Trust, Cambridge
Year of first medical qualification:
1993
Current membership(s) of professional, national and regional bodies:
Royal College of Surgeons of England Association of Surgeons of Great Britain and Ireland(ASGBI) Association of Upper Gastrointestinal Surgeons(AUGIS) Association of Laparoscopic Surgeons(ALSGBI) International Society for Diseases of the Esophagus(ISDE)

Contact Details
Private secretary:
Nicola Safranek
Private secretary telephone number:
07889 890788

Consultant Upper GI Surgeons: Mr R Hardwick, Mr A Hindmarsh, Mr P Safranek, Mr V Sujendran
These are the Upper GI Team. The only one that I don't know is Mr Sujendran who is new to the post. The other three are approachable and very kind. Mr Safranek is a wonderful surgeon. Confident and absolutely no B*** S*** type of guy.

Specialist Nurse practitioners: Ben Smith, Nyarai Chinyama, Sarah Coles
I note these because they have a wealth of experience and Ben especially would be able to help you navigate you way around the maze of Addenbrook's and point you in the right direction. He is an amazing chap, and you are welcome to mention Rob and I if you want to.
Tel: 0044 1223 596383 - often on answer phone but any one of the three might answer.

I wish you and Don so much luck and good health for the future Judy. Have a lovely holiday and may God bless and keep you.
Hugs and prayers,
Marci x

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

Wow! That is great information and detail - I appreciate it so much and intend to talk with Don further.

Thank you so much,
Judy

Freida
Posts: 191
Joined: Nov 2011

Hi Judy
I wrote a post on this thread a few days ago but must have pressed preview - again!!! - instead of submit. And I was waxing all eloquent and stuff. I think it is a great idea for you to leave your bike at home and get to enjoy the view on Don's new toy. Enjoy the ride my friend, if anyone can it is you two. You both just wow me.
Love and hugs
Freida

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

Freida:

I have done that same thing so many times and I get so p*((ed when I look and it isn't there. All that work and profound words for nothing. Bah humbug!

You and Bill have certainly wowed us with your great news - I am still smiling! I can feel your hugs all the way from the Okies to Michigan!

Talk with you soon my friend,
Judy

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