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Don goes back for post-operative chemo AND radiation

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

Well - the good news is that out of the seven lymph nodes taken (everyone has a different amount and they take what they can see during the surgery) none had active cancer, two did show scarring but no active cancer.

The pathology report was not what we hoped for - we called for the report and a nurse called us back and she was literally reading the report and not very informative. We had an appointment with the chemo onc today who explained it to us and he said he talked with the surgeon yesterday and the surgeon told our chemo doc that he (the surgeon) should have called us in his office prior to the 17th and explained it to us. It was frustrating trying to ask the nurse questions she could not answer. But we were relieved to talk with our chemo onc today. He was very informative and gave us a copy of the pathology report.

Don still has cancer in the margin on the stomach side. They removed as much of the stomach as they could, but the cancer was still in the margin (for the newbies - the margin is where they cut away). So at the resection - where the stomach is attached to the esophagus (in the neck) there is still cancer so in approximately 4 to 6 weeks, Don will need to undergo 'cleanup' radiation and chemo. We were told this is very rare. Don will have about 3 months of radiation and chemo - not sure yet exactly how much of each and whether it will be concurrently or separately. The tumor boards at Univ of Mich and West Michigan Cancer Center are reviewing and on April 17 - we will see Dr. Reddy, the surgeon for post op checkup, then on the 18th we will see both the chemo and radiation oncologists who will go over the recommended plan for Don.

Paul researched this last night for us and found out that radiation after surgery is the standard procedure for cancer in the margin, and Jen told us that her dad also had radiation after surgery.

The cancer is only presenting at the resection margin and we are hopeful that this next round of the battle with the beast will be successful. Chemo onc wants to use another chemo therapy as the report stated 'poor response to treatment'. No mestasis is known.

Don was on carboplatin and taxol chemo prior to surgery as well as radiation. Of course, we are dealing with healing from the surgery - Don did very well with the surgery and each day improved - had no complications, but as you all know, this is a big deal surgery and really takes a toll, but he improves each day. This news was devastating - no one wants to go through treatment again - but like they say "It is what it is". Depression is the current state of mind - naturally occurs after a big surgery like this in a lot of people and then to top it with a crappy pathology report sure doesn't help. BUT! We are determined to beat this cancer and we are blessed to have an awesome support group in our friends, families, and everyone on this site and we trust in our awesome God that His plan is perfect.

I did read a report that it has been scientifically proven that cursing eases pain. I want you all to know that right now I am totally pain free. Don doesn't curse anywhere as much as I do, but I'm going to give him a copy of that report to read and see if he'll give it a whirl! LOL

If anyone has any experience in this type of pathology report and treatment recommendations, we would welcome your input. Thank you for your continued prayers, hugs, calls and thoughts as the journey continues.

Hugs,
Judy & Don

P.S. The wedge for the bed came today so tonight I think we can actually sleep in the same bed together - I hope I don't bump him and I hope it feels good to him to be able to sleep in our bed again - he has slept in his recliner since we've been home and I've been sleeping on a sofa to be in the same room with him. Exciting!!!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

Although Bill and I went through the whole esophagectomy experience, I learned so much from reading your post. He had 5/22 positive nodes, but clean margins. He also did Taxol and Carbo prior to surgery. Please keep us posted as you go throgh the chemo and radiation.

It does feel good being able to sleep in the same bed asd it brings back a little normalcy.

LOVE your thoughts on cursing! It made me chuckle.

bingbing2009
Posts: 179
Joined: Feb 2011

Judy and Don,

I am so sorry to hear about the pathology report. I know this is not what you wanted or needed to hear. I wish I had some great insight, but I don't. I just wanted you to know that I am sending lots of positive thoughts and energy your way, along with hugs and prayers.

It's good to know that you will be back in the same bed tonight. Maybe you can begin to get back to a bit of normalcy.

Hang in there!

Wishing you the best,
Melinda

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

Judy,

I know it must be depressing for you and Don to hear this news. I know when they told me I was going to need follow up chemo I thought "when does this stuff end?".

I am sure Don was hoping after what he has already been through; he could just concentrate on healing. I guess there will be some more work to do.

Sending lots of prayers, positive thoughts, and hugs your way,

Paul Adams
McCormick, South Carolina

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

I'll curse a few times with you, Judy. Makes me feel better as well.

I'm so sorry to hear that it's both rads & chemo. Hopefully Don will do as well with this follow-up treatment as he did with the initial go-round.

Our prayers and positive thoughts and many, many hugs go with you both!

Terry

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

I LOVE your research on cursing! For me, that was really good news. I should never have any kind of pain again. 8-)
Seriously, I'm sorry Don has to go through more treatments to defeat this beast. After already going through chemo,radiation and surgery, it just doesn't seem quite right to have to have more. On the bright side, the doctors are being aggressive in treating him and you both have so many people in your corner sending positive thoughts and prayers. I love your attitude!
Hugs to you,
Rita

PS: I really suck at Words with Friends! Thanks for playing.

sangora
Posts: 218
Joined: Mar 2011

You two are troopers and will get through this one day at the time. It is a bummer to have to deal with the surgery and now more treatment, but this gives Don the best chance of becoming one of the NED folks. Will be praying for you both thru the coming days and weeks.
Sam Stage IV

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

Hi Judy,
So sorry to hear about the path report. Did they take any of the stomach out? About the third top of my stomach was removed because of something spotted there. Like you said this is a bump in the road but it is a disappointment and you and Don have every reason to be stunned but sounds like you are already planning to take the steps necessary to ensure Don's progress. It is a big surgery and Don needs to get his strength up to face the next round of treatment. I will be thinking and praying for you all. So glad you have such a great support system too. I love your research on cursing. When I would be going to some of my treatments or inpatient stints, I would yell the really bad word with the windows up, it really helped relieve stress. That along with prayers, will get you thru. I hope Don continues on his recovery and now that the wedge is there, snuggling is great for pain relief too. many hugs,
Donna70

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

sorry for the double post, having a lot of trouble getting on this board and then posting??
Donna70

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

Hi Donna

Yes, as much of the stomach was removed as could be removed. We had the pleasure to speak with Keith (Cora's hubby) and in talking with him, I remembered that Don was HER2 positive. Initially he was going to participate in the clinical trial, but after way too long in the waiting to get started game and the fact that Don had already been 'tattooed' and finding out that the radiation machine was different (does not go completely around the body/tumor like the machine he did end up using) - we decided to not to participate in that trial. I forgot to discuss this with our chemo onc yesterday, but will call and leave him a message to see if herceptin is a possibility this second time around.

Boy, I will tell you - two (or 25) heads is better than one - is certainly true in this case - the input we get get from everyone is SOOOOOOOO appreciated and truly helpful. We do truly appreciate the 'pay it forward' attitude everyone has.

Also, there was talk of perhaps another surgery, but from my understanding - this would be after the second round of treatment (perhaps to see if necessary?) - but we did not discuss this in any detail. If I remember correctly, I did see someone post on here that they had a second operation - which I thought at the time certainly couldn't be right, but now I see that yes, a second op is a possibility. Will deal with that bridge if and when we need too.

Sleeping in the same bed was ok - I think worried too much about bumping him - I am one of those sleepers who likes to 'throw' my leg over his body (which he doesn't like to begin with) and I was so afraid that I would do that in my sleep - I just finally got up. Baby steps right? LOL

Thank you so much for support - it is greatly appreciated!

Love and hugs,
Judy

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Judy,

I read your post last night but didn't have the heart to reply. Still I don't have the words to express how sad it makes me to read Don's path report was not clear and that the surgon didn't give you the news himself, so you could ask questions. All this is hard enough to deal with, without having to jump through hoops to get answers. Please know Don and you are in our thoughts and prayers.

I adore how you sign off with Hugs. I think we could all use more of those, with a some cursing too!

Take Care,
Lee Ann

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

We sure could use more hugs couldn't we? We seem to be a 'huggy' type of group and outside of the stupid cancer it seems to me that we all have a great sense of humor. I'm pretty sure not everyone agrees with the cursing - but hey - it has been scientifically proven - so who am I to argue and I'm so darned good at it! LOL

I am going use Hugs and FAEC for my signature line from now on - depending on the mood - I'll change it up and use FEC and Hugs once in awhile also.

Hugs and FEC,
Judy

a1phil
Posts: 30
Joined: Jan 2012

We are so sorry you guys have so much on your plate at this time. Keep up the good fight and keep on keeping on!! I know you will continue the good fight. Prayers and good thoughts continue. your new friends Phil and Dianne

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

How are you guys doing? What's going on with yourselves? I have been too darned wrapped up in things on our end to touch base with you as I had intended. If you get a chance, can you let us know how you're doing? We think of you every day.

Hugs and FEC,
Judy & Don

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

Judy & Don:

I remember the stress we both felt waiting for my post-op path report, and the relief I felt when it came back clean. I actually cried right there in the surgeon's office. So I can only imagine your disappointment (that word barely covers it!) when you heard about the funky margins. I'm really sorry to hear it, as well. What a bummer.

It's helped me a lot in the many ups & downs since my surgery to remind myself that "2 steps forward, 1 step back" is the rule, and that's just the way it is. Of course, this is a big step back that you surely didn't want to hear, but like Judy said, it is what it is, and now it just has to be dealt with. The only other thing that comes to mind is how huge it is that the cancer is not active in the lymph system and, hugest of all (is that a word?) is that there's no metastisis. That would really and truly suck, so that's actually some good news, isn't it?

I had a CT scan yesterday for my 6 month post-op follow-up with my surgeon next Wednesday. I'm feeling pretty good right now, for the most part, but even as a Stage 1 I know full well that I could get unexpected bad news next week. I can't say I'd be prepared to hear it, any more than I'm sure you were, but like you I know it can happen. That's just the nature of the beast and when & if that news comes we just have to press on.

You already know how much love and positive energy is coming your way from all of us on this board. Stay strong, my friend, and keep your eye on the prize. You sound like a fighter, you have a great medical team, and you have a strong and loving caregiver in your corner. I know this will be a difficult few months comng up, but I'm confident that it will turn out fine in the end.

Best,
Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

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

You are all right on the mark - it sure could be worse. Yes it was a big blow - but we are back on our feet and ready to forge ahead. One of our girlfriends told us the first time was just a practice run - I think I like that scenario. Knowing what doesn't work is the key to finding what will work.

Like each one of you are doing and we're in this with you - we are positively contributing to finding a cure for this cancer. What the doctors are learning from us will absolutely help someone down the road - and that's huge.
We have experienced the collaboration between our cancer center and the University of Michigan Hospital and our chemo onc researches this particular cancer and references the studies that are available to him - all of that information has come from past esophageal cancer survivors and patients and caregivers and is being passed on to us and to each of you.

Even on your worst feeling day - you still contribute to the health, education and welfare of another human being with this cancer and yes it sucks and there's not always winners in the 'winning' sense of the word, but to be contributing something to a disease like this - makes us a very special group of people who will be warriors now so that someday all esophageal cancer patients have an awesome shot at being winners.

You are right Bob - one step forward and two steps back seems to be the pace at the beginning of this deal - but it will get better. Just so comforting to have all of you here on this site with us.

FEC and hugs,
Judy

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

FEC!

You're right, Judy. I DO feel better! :)

{HUGS} to you and Don.

Terry

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

Judy,
I know how it feels to hear this kind of news, and also how good it feels to have a plan of action to get started on. Rickie's favorite saying was "it is what it is, and we will fight it with everything we've got". I will keep you both in my prayers, and send positive thoughts your way.
You are so right also about helping others who are on this journey now or will join us in the future. Every time Rickie had an endoscopy done at MD Anderson, they asked for permission to harvest some blood and tissue samples to be used for research. Of course we always gave permission. Without research there will be no end to this disease. Our attitude was that even if it would not help Rickie, it might be able to help the next guy to come along. There is so much work to be done on EC...we even filled out a survey for a doctor there at MD Anderson who was researching the different kinds of foods EC patients ate, and trying to find a common thread. We found it interesting that many of the questions dealt with processed and smoked meats, and combinations of other foods eaten along with those in a meal. Very interesting stuff. We also knew that with every chemo treatment and clinical trial Rickie took, research was being done on the effects of the drugs on the cancer so that perhaps that drug might one day help someone else with EC. If no one ever took any of the treatments, how would the doctors ever be able to find out which drugs work and which ones don't. So while we knew there was no "cure" for our situation, we were willing to go through the treatments in the hopes it might help others down the road. We are all in this together!
Hugs!
Cheryl
Wife of Rickie, dx stage IV EC Oct. 2010
Mets to bones and brain
Lost the battle Jan. 4, 2012

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Judy,

I am sorry to read about Don's positive margins. I know this isn't the news we had hoped for but tell Don to stay strong. I've been fighting since February 28th of 2011 and not had a minute to catch my breath. I'm about 8 months post-op and still on chemo and thankful everyday for the ability to keep fighting. We're behind you guys here with plenty of love and lots of prayer and positive thoughts. As my oncologist told me when I advanced to stage IVb, "The fight isn't over, just changing".

All my best and stength!

JimboC

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