Decisions Decisions.... Surgery or No Surgery???

Fighting4Popi2

Update on Popi...

Background:
-T3N1 in Nov, 2011.
-Chemo and Rads completed. Jan, 2011
-Endoscope and PET March, 2011..

-Results from PET, no spread or cancer detected.
-Results from Endoscope-Surgeon said he could not find any evidence of cancer:) He took 5 biospys of the area where the cancer was. We will get results TOMORROW...

So the question I have is why would the Rads doctor say "well if Biopsy is clear, see you in 4 months?" Don't we need surgery???

The surgeon said "we will see what biospy says?"

So along the path I have always wondered why this group seems to be very agressive to do surgery and the doctors we have been interacting with have been on the fence with it? I want a cure and I want good quality of life for my father..I know don't we all..

Also has anyone become a survivor without surgery??

God Bless everyone fighting this disease..

Thanks
Lynn Longo

mark krabbe

surgery
I was in about the same position you are in and decided to have the surgery about 6 months ago. It was rough but I'm doing great now. The doctors told me that I was young (54)and healthy so they thought the risk of having it come back was more than the risk from surgery. I'm back at work and getting more energy back every day. I do have to eat less more often and don't eat for a few hours before I go to bed but it hasn't been that much of a problem. I'm holding my weight and didn't need to use the feeding tube so they removed it a few weeks after surgery. Mark

BMGky

It is so hard to know what
It is so hard to know what to do. All I can say is that my husband was thought to be either Stage IIB or Stage III after staging with no node involvement. His PET scan following chemo/rad was clear. I don't believe they did a scope then. Anyways, had the Ivor Lewis esophagectomy. When they biopsied the removed esophagus, they found live cancer cells under the scar tissue where the tumor had been. Our oncologist said emphatically, "That's the reason we do the surgery!!" I am no medical person. We were told that the only possible way to have a curative outcome was to have the surgery. But each person's situation is different, and I am certainly no medical person.

Post-op was staged IIAN0M0. He had his two year PET scan and there was no evidence of disease. Is working full time and enjoying life. It was not easy but worth every single pain and discomfort.

I pray for your father and your family for guidance in making the right decisions. BMGky

captdave

Lynn, I had surgery for
Lynn, I had surgery for stage 0 to stage 1. I am 50 and after only two months am back to work full time. My surgeon didn't place a feeding tube etc.. I decided to have the surgery because they had found three biopsies that showed cancer. the post surgical pathology only showed high grade displacia but I know i made the right choice and am now cured.Its an individual decision bad
sed on the best medical advice you can get and on your comfort level and basically its risk management. I don't gamble so I went for the sure thing.

good luck and God bless.

Dave

Unknown

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JimboC

This is a surgical cancer
When I met with my oncologist the first time, he told me. "This is a surgical cancer" He went on to tell me that our preoperative treatment would be guided by the surgeon to give him the best possible chance of removing any remaining disease in a hope for a cure. When I completed my preoperative treatment, I had no evidence of disease. There was no activity in the PET scan, all my nodes had pretty much returned to normal. For all outward appearances, I was cured. I had surgery and even with that, had a reoccurance. I would strongly suggest seeking out a second opinion of any option that didn't involve surgery. I should add, there are some case where surgery is not an option. Those being overall health of the patient or the progression of cancer to stage IVb. Those aside, if the patient is healthy and the cancer is not progressed past the point of surgery, it should be strongly considered.

This cancer is not one to gamble with. All my best to your father!

JReed

Surgery or not
Hi Lynn:

Surgery if possible, absolutely. Recurrence rate is just too high with this cancer and if those possible recurrent cells are removed during surgery - so much the better.

It is not too late to consult with Dr. Orringer or Dr. Reddy (or another partner on that team) at Univ of Mich if you have any hesitation or question the advice you are given.

Judy

TerryV

Surgery - yes
My husband also had a complete response to rads & chemo. He was scared of the surgery and did *briefly* consider not going forward with the surgery. But when he stopped and thought about how aggressive this damn cancer is, and how good life is, there was no choice. Surgery is a MUST.

Prayers to you and the family!

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

mardigras

Second opinion is a necessity
Lynn,
Please, please get a second opinion.
Most of the people here have had to make difficult decisions, but almost all would say
that depending on the stage, being a candidate for surgery is a blessing.
I wish you well in whatever you decide.
Prayers and hugs,
Marci

Unknown

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Freida

LynnI would ask them if
Lynn
I would ask them if there is a reason for the reluctance to do surgery. There may be a reason.

My Bill is a stage 3 but his doctors at M D Anderson do not consider him a surgery candidate because of his other health problems. It did not come as a great surprise to us when they told us that as it is a big surgery and he does have several health problems including prior heart and lung damage from a clot and an ongoing clot problem (MDA switched him from coumadin to very expensive lovanox because they found a clot in his lungs that had developed despite the coumadin). They do not think he would survive surgery so he is not having it.

Reading the constant posts saying there is no hope without surgery fills me with despair. I can only hope and pray that our very experienced doctors at M D Anderson are being honest when they tell us there is a chance of survival without it.

Best of luck
Hugs
Freida

TerryV

Freida said:

LynnI would ask them if
Lynn
I would ask them if there is a reason for the reluctance to do surgery. There may be a reason.

My Bill is a stage 3 but his doctors at M D Anderson do not consider him a surgery candidate because of his other health problems. It did not come as a great surprise to us when they told us that as it is a big surgery and he does have several health problems including prior heart and lung damage from a clot and an ongoing clot problem (MDA switched him from coumadin to very expensive lovanox because they found a clot in his lungs that had developed despite the coumadin). They do not think he would survive surgery so he is not having it.

Reading the constant posts saying there is no hope without surgery fills me with despair. I can only hope and pray that our very experienced doctors at M D Anderson are being honest when they tell us there is a chance of survival without it.

Best of luck
Hugs
Freida

Never give up on HOPE
Freida,

Meg is the only doctor that I am aware of posting in this forum and she's pediatric, not cancer. William and Sherri speak from years of experience, but NOT from a doctor's perspective. Stark reality is part of our lives once the EC diagnosis is made, but so are HOPE and BELIEF.

Nothing is ever impossible, and your husband's doctors may have an Ace up their sleeve. Or at the least, a helpful wild card. Besides, medicine is only a part of this battle. Your attitude and your husband's plays a big part in his well being also.

Remember, hon, everyone is a statistic of ONE.

With love & hugs to you both!

Terry

Freida

TerryV said:

Never give up on HOPE
Freida,

Meg is the only doctor that I am aware of posting in this forum and she's pediatric, not cancer. William and Sherri speak from years of experience, but NOT from a doctor's perspective. Stark reality is part of our lives once the EC diagnosis is made, but so are HOPE and BELIEF.

Nothing is ever impossible, and your husband's doctors may have an Ace up their sleeve. Or at the least, a helpful wild card. Besides, medicine is only a part of this battle. Your attitude and your husband's plays a big part in his well being also.

Remember, hon, everyone is a statistic of ONE.

With love & hugs to you both!

Terry

Thank you so much Terry. I
Thank you so much Terry. I needed to hear that. I have not told Bill about this site because I don't want him to lose his wonderful and positive attitude, but I have to hide the sense of hopelessness I feel from him and from everyone else. Makes me feel very alone sometimes.

I needed those hugs today as he is really started suffering side effects the last few days.

Freida

TerryV

Freida said:

Thank you so much Terry. I
Thank you so much Terry. I needed to hear that. I have not told Bill about this site because I don't want him to lose his wonderful and positive attitude, but I have to hide the sense of hopelessness I feel from him and from everyone else. Makes me feel very alone sometimes.

I needed those hugs today as he is really started suffering side effects the last few days.

Freida

You just...
come find me any time you need a hug!

There's information I have not shared with Nick as well. He knows of this site. He knows the odds, and I've not hidden the heartache that I've had from the site's losses. But he doesn't need the daily reminders that are so much a part of the "life" here.

Attitude won't do it by itself, but in my opinion, neither will medicine alone.....

You are NOT alone! We are right here BESIDE you.

Terry

Unknown

TerryV said:

You just...
come find me any time you need a hug!

There's information I have not shared with Nick as well. He knows of this site. He knows the odds, and I've not hidden the heartache that I've had from the site's losses. But he doesn't need the daily reminders that are so much a part of the "life" here.

Attitude won't do it by itself, but in my opinion, neither will medicine alone.....

You are NOT alone! We are right here BESIDE you.

Terry

This comment has been removed by the Moderator

TerryV

unknown said:

This comment has been removed by the Moderator

I thought you might respond...
William,

My response to Frieda came from her statement "I can only hope and pray that our very experienced doctors at M D Anderson are being honest when they tell us there is a chance of survival without it." If her husband's doctors at MD Anderson say there is a chance, who am I to argue, hence my statement of hope for Frieda and her spouse. Frieda needed a hug. That's what I wished to offer.

I should have said that Meg is writing from the perspective of a patient, not a doctor. That would have been a clearer statement. As would - there have been no EC doctors writing on the forum since I arrived. Yes, Keith and Cora are here, but like Meg - Cora is writing from her perspective, not as a medical professional. I am aware that Meg is a Stage IV that has opted for no more chemo. She's fought a difficult and brave battle. I hope she gets her wish to get her youngest through school.

Perhaps you overlooked my comment "Attitude won't do it by itself, but in my opinion, neither will medicine alone....." There was nothing stated to imply that EC could be beaten with purely a "good attitude. However, I do believe that medicine works better when the patient has a good attitude.

You provide informed and incredibly well researched information & facts, as does Sherri. Forgive me if you thought I implied otherwise. Your information is quality and the like is not found anywhere else on the Internet. Thanks to informed and well researched individuals such as yourself and Sherri, I am well aware how grim EC is as a cancer AND how important surgery is to an EC patient's successful recovery. Why do you think my husband proceeded with surgery after being told he had a complete response to chemo & rads? His doctors insisted, and so did I - thanks to my knowledge coming from you HERE. It is the knowledge gained here that enables my husband to be here to tell me he loves me. I am grateful beyond words for that.

William - I would not consider providing medical information. I don’t have the information or experience that you and Sherri do. And thank you for being there to inform and instruct those that find their way to CSN. I respect what you offer those that come here looking for information. I only share our personal experiences with EC, nothing more. I freely offer virtual hugs to those that need them.

Terry

Apologies to Frieda or anyone that might get the wrong opinion from my reply to Frieda.

Freida

TerryV said:

I thought you might respond...
William,

My response to Frieda came from her statement "I can only hope and pray that our very experienced doctors at M D Anderson are being honest when they tell us there is a chance of survival without it." If her husband's doctors at MD Anderson say there is a chance, who am I to argue, hence my statement of hope for Frieda and her spouse. Frieda needed a hug. That's what I wished to offer.

I should have said that Meg is writing from the perspective of a patient, not a doctor. That would have been a clearer statement. As would - there have been no EC doctors writing on the forum since I arrived. Yes, Keith and Cora are here, but like Meg - Cora is writing from her perspective, not as a medical professional. I am aware that Meg is a Stage IV that has opted for no more chemo. She's fought a difficult and brave battle. I hope she gets her wish to get her youngest through school.

Perhaps you overlooked my comment "Attitude won't do it by itself, but in my opinion, neither will medicine alone....." There was nothing stated to imply that EC could be beaten with purely a "good attitude. However, I do believe that medicine works better when the patient has a good attitude.

You provide informed and incredibly well researched information & facts, as does Sherri. Forgive me if you thought I implied otherwise. Your information is quality and the like is not found anywhere else on the Internet. Thanks to informed and well researched individuals such as yourself and Sherri, I am well aware how grim EC is as a cancer AND how important surgery is to an EC patient's successful recovery. Why do you think my husband proceeded with surgery after being told he had a complete response to chemo & rads? His doctors insisted, and so did I - thanks to my knowledge coming from you HERE. It is the knowledge gained here that enables my husband to be here to tell me he loves me. I am grateful beyond words for that.

William - I would not consider providing medical information. I don’t have the information or experience that you and Sherri do. And thank you for being there to inform and instruct those that find their way to CSN. I respect what you offer those that come here looking for information. I only share our personal experiences with EC, nothing more. I freely offer virtual hugs to those that need them.

Terry

Apologies to Frieda or anyone that might get the wrong opinion from my reply to Frieda.

Oh, please don't apologize
Oh, please don't apologize to me Terry. I didn't get any sort of wrong impression from you at all and your words were very comforting and I needed that that day. Bill is not a surgery candidate despite being a stage 3, and I absolutely do trust the doctors opinion on that as he does have multiple health and physical issues and would not probably be a candidate for any surgery let alone this one. It honestly was no surprise when they told us. Although this site has some wonderful resources and people sharing information, it really has made me feel quite hopeless about Bill's prospects for survival. It is wonderful to encourage people to have the surgery if they can have the surgery, but for those that can not, and there are many including some of those like Bill at stage 3, it is gutwrenching to be basically given a death sentence here when the doctors are doing their best to give a chance of survival.

Terry, I am so very sorry that you felt you needed to apologize to anyone for your kind words to me. That is just so wrong. All your word were were comfort and they were so much appreciated - you did not contradict anyone - you just tried to comfort me when you could tell I needed it. And I did need it, and your words were comforting. I have kept coming back to this site because of the kindness I have found here and the comfort of sharing with other people going through the same experience. But for me, I think it is becoming more of a negative than a positive, especially when someone showing such kindness to me is made to feel guilty for doing so.

Love and hugs to all the fighters, survivors, and those who have lost their loved ones here. I wish you all the very best for the future. I will miss you.
Freida xx

TerryV

Freida said:

Oh, please don't apologize
Oh, please don't apologize to me Terry. I didn't get any sort of wrong impression from you at all and your words were very comforting and I needed that that day. Bill is not a surgery candidate despite being a stage 3, and I absolutely do trust the doctors opinion on that as he does have multiple health and physical issues and would not probably be a candidate for any surgery let alone this one. It honestly was no surprise when they told us. Although this site has some wonderful resources and people sharing information, it really has made me feel quite hopeless about Bill's prospects for survival. It is wonderful to encourage people to have the surgery if they can have the surgery, but for those that can not, and there are many including some of those like Bill at stage 3, it is gutwrenching to be basically given a death sentence here when the doctors are doing their best to give a chance of survival.

Terry, I am so very sorry that you felt you needed to apologize to anyone for your kind words to me. That is just so wrong. All your word were were comfort and they were so much appreciated - you did not contradict anyone - you just tried to comfort me when you could tell I needed it. And I did need it, and your words were comforting. I have kept coming back to this site because of the kindness I have found here and the comfort of sharing with other people going through the same experience. But for me, I think it is becoming more of a negative than a positive, especially when someone showing such kindness to me is made to feel guilty for doing so.

Love and hugs to all the fighters, survivors, and those who have lost their loved ones here. I wish you all the very best for the future. I will miss you.
Freida xx

Freida
If you are leaving CSN, I would love to have your email so I can continue to offer you words of encouragement and virtual hugs. We all need that lift every now and then.

Please Private Message me with your email and I WILL RESPOND.

My only apology is to those that misunderstood me. I didn't think you had

Hugs to both you and Bill! Know that I'm rooting for you both from my corner of the sidelines.

With much love and warm hugs,

Terry