If cancer comes back..is there any hope?

jtebo1955

My Dr told me in the beginning after my surgery that if it comes back there is nothing that can be done. Has anyone else been told this? Friends say there is always something that can be done, But I'm not so sure.
The last 30 days I was on a trip and felt fine and didn't give much thought to the cancer for the first time in 18 months..I have an appointment Friday and was thinking about not getting anymore scans. If it was to reoccur and nothing to be done, I'm thinking I don't think I want to know. Does anyone else feel like this?

Unknown

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Bermudagirl

unknown said:

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I of course don't have EC,
I of course don't have EC, Dave does, but I did go through chemo and radiation for Hodgkins 10 years ago. At the time I said, if this ever comes back I'm not going through *this* again. But of course you do. Kind of like having a baby, I imagine. You forget the pain and do it again. And if its your life at stake, I think once some time has passed you again will want to fight. Now of course I am using a little humor here, and in no way mitigating your worries and concerns, please understand that! I hope that you don;t have to face that dilemma.

birdiequeen

Something to consider
Jtebo,

I think you raise a very good question. They can do Chemo and Radiation to try and keep it at bay, but I think once you are stage four a miracle is your best chance and miracles do happen. I too am not the one with the cancer, but I think the patient should decide what they would do if it came back. Would you prefer Eric’s path of no chemo or radiation? Eric was one of our stage four members who shared a great deal of his journey with us. He decided not to take chemo or radiation and you can search his post to read his reasoning. If that would be your decision then it does seem like the scans would be pointless. But, that is only if you are 100% sure you would not take treatment if it returned. In my humble opinion it is a question that should be thought about and discussed and decided. What better time than after a period of time when you were able to not “give much thought to the cancer”. I applaud you for bring up the topic.
Lee Ann

jgwright

I'm Stage IV
And I'm trying whatever I can find. But whatever I get needs to work. So I'm looking at clinical trials now, trying to find one relatively close, plus I'm getting some targeted radiation on one of my metastases. I have mets to my adrenals, plus 4 subcutaneous lumps on the right side of my chest. One fairly big (about 3/4 of an inch in diameter) and one about 3/8ths of an inch, and two tiny ones, one that I just found today.

I'm wondering if the little ones can, and/or should be surgically removed. They're right there on the surface. My original cancer (the stupid EC) seems to be small and quiet right now.

--Jerry

JReed

jgwright said:

I'm Stage IV
And I'm trying whatever I can find. But whatever I get needs to work. So I'm looking at clinical trials now, trying to find one relatively close, plus I'm getting some targeted radiation on one of my metastases. I have mets to my adrenals, plus 4 subcutaneous lumps on the right side of my chest. One fairly big (about 3/4 of an inch in diameter) and one about 3/8ths of an inch, and two tiny ones, one that I just found today.

I'm wondering if the little ones can, and/or should be surgically removed. They're right there on the surface. My original cancer (the stupid EC) seems to be small and quiet right now.

--Jerry

Jerry - would be interested to know if you find out about
Jerry:

I sure would be interested to know if you find the answer to your question if surgery and or should be done to remove the new tumors. If you have time - could you let us know what you find out?

Thank you so much and best of luck to finding to a trial close to home. I hope there is one you can consider.

Best wishes,
Judy

Joel C

JReed said:

Jerry - would be interested to know if you find out about
Jerry:

I sure would be interested to know if you find the answer to your question if surgery and or should be done to remove the new tumors. If you have time - could you let us know what you find out?

Thank you so much and best of luck to finding to a trial close to home. I hope there is one you can consider.

Best wishes,
Judy

Jerry & Judy,
I was originally staged T2N1M0 and had pre-op radiation and chemo. Nine months after the MIE I had a recurrence in the right paratracheal (near right clavicle). My surgeon was the one that found the recurrence and originally recommended I treat the node with chemo and radiation. When after two months my radiation and medical oncologists could not agree on a treatment my surgeon offered to remove the node (10/27/11) and present the oncologist’s with a different scenario. After the node was removed all the doctors involved agreed that six round of EOX would be the best follow up treatment. Unfortunately I was only able to tolerate two rounds of the EOX and had to stop because of an allergic reaction. Even though I’ve had two clean scans I’m still considered stage IV. My next scan is in September and I’ll guess we’ll see happens then.
Regards,
Joel

tb7

Feedback (for Jerry & Joel also!) . . .
I have not posted for a while, but continue to check in weekly. Just thought I would chime in! My husband was diagnosed T3N1M0 in October 2007. You can check his story on my “about me” page, but as a quick update, he started with chemo and radiation in January 2008, had surgery in March 2008, a recurrence in November 2009, more chemo on a clinical trial starting January 2010 which produced really good results until October 2011, when he had a second recurrence. He opted to enter another clinical trial in November 2011 and is continuing at this time. I don't think my husband would have opted for not checking the status of his cancer on a routine basis. The need to know and to fight is really strong within him!

He has worked throughout all of his treatments, has his up days and down days, but generally is doing well. He has been on some vacations (not enough in my mind!) and several business trips. Monday, he will be returning from a one-week family trip to Lake Powell. I opted not to go and cell phone service has been non-existent out there, so I can’t report on how he has done on the trip.

My husband’s first oncologist told him, same as you, with a recurrence he changes to Stage 4 and options were few. That was almost three years ago. As Sherri said, no one knows how long we have or what tomorrow will bring. Through the participation in clinical trials, my husband hopes to gain some time for better treatments to make it to market, hopes that there will more options not only for future patients, but also for those currently afflicted. Not all clinical trials prove beneficial, but, for some, they stall cancer progression and give us time.

Clinical trials can be difficult from the standpoint of location. We were lucky that two were in our backyard, so to speak. My husband was originally diagnosed and treated at University Hospitals in Cleveland, and both trials have been through Case Comprehensive Cancer Center (joint effort between University Hospitals and Cleveland Clinic).

I wish the best for you and your family. Health decisions are very personal, no one can really know what is best except for you. I just wanted to provide some feedback to add to the mix.

Best always and lots of hugs,

Trisha

jtebo1955

tb7 said:

Feedback (for Jerry & Joel also!) . . .
I have not posted for a while, but continue to check in weekly. Just thought I would chime in! My husband was diagnosed T3N1M0 in October 2007. You can check his story on my “about me” page, but as a quick update, he started with chemo and radiation in January 2008, had surgery in March 2008, a recurrence in November 2009, more chemo on a clinical trial starting January 2010 which produced really good results until October 2011, when he had a second recurrence. He opted to enter another clinical trial in November 2011 and is continuing at this time. I don't think my husband would have opted for not checking the status of his cancer on a routine basis. The need to know and to fight is really strong within him!

He has worked throughout all of his treatments, has his up days and down days, but generally is doing well. He has been on some vacations (not enough in my mind!) and several business trips. Monday, he will be returning from a one-week family trip to Lake Powell. I opted not to go and cell phone service has been non-existent out there, so I can’t report on how he has done on the trip.

My husband’s first oncologist told him, same as you, with a recurrence he changes to Stage 4 and options were few. That was almost three years ago. As Sherri said, no one knows how long we have or what tomorrow will bring. Through the participation in clinical trials, my husband hopes to gain some time for better treatments to make it to market, hopes that there will more options not only for future patients, but also for those currently afflicted. Not all clinical trials prove beneficial, but, for some, they stall cancer progression and give us time.

Clinical trials can be difficult from the standpoint of location. We were lucky that two were in our backyard, so to speak. My husband was originally diagnosed and treated at University Hospitals in Cleveland, and both trials have been through Case Comprehensive Cancer Center (joint effort between University Hospitals and Cleveland Clinic).

I wish the best for you and your family. Health decisions are very personal, no one can really know what is best except for you. I just wanted to provide some feedback to add to the mix.

Best always and lots of hugs,

Trisha

To scan or not to scan
Thank you all very much for your input. I have no doubt that I would continue treatment if offered. Clinical trials might me my only option. The problem is Dr said aft the surgery, I had 4 more rounds of chemo, and at that time he said I had all the chemo and radiation I could have. This is what I'm basing my thoughts around. I see him on Friday and plan on talking to him then if he still stands firm on no more treatment I shall visit U of M and get another opinion. Otherwise I'm thinking I'm not sure I want to know that I have limited time... It's been 18 months since my diagnosis, I've done very well. Mentally has been my biggest challenge. I will let you know what happens on Friday.

Wishing all good thoughts
Judy

Kenem

tb7 said:

Feedback (for Jerry & Joel also!) . . .
I have not posted for a while, but continue to check in weekly. Just thought I would chime in! My husband was diagnosed T3N1M0 in October 2007. You can check his story on my “about me” page, but as a quick update, he started with chemo and radiation in January 2008, had surgery in March 2008, a recurrence in November 2009, more chemo on a clinical trial starting January 2010 which produced really good results until October 2011, when he had a second recurrence. He opted to enter another clinical trial in November 2011 and is continuing at this time. I don't think my husband would have opted for not checking the status of his cancer on a routine basis. The need to know and to fight is really strong within him!

He has worked throughout all of his treatments, has his up days and down days, but generally is doing well. He has been on some vacations (not enough in my mind!) and several business trips. Monday, he will be returning from a one-week family trip to Lake Powell. I opted not to go and cell phone service has been non-existent out there, so I can’t report on how he has done on the trip.

My husband’s first oncologist told him, same as you, with a recurrence he changes to Stage 4 and options were few. That was almost three years ago. As Sherri said, no one knows how long we have or what tomorrow will bring. Through the participation in clinical trials, my husband hopes to gain some time for better treatments to make it to market, hopes that there will more options not only for future patients, but also for those currently afflicted. Not all clinical trials prove beneficial, but, for some, they stall cancer progression and give us time.

Clinical trials can be difficult from the standpoint of location. We were lucky that two were in our backyard, so to speak. My husband was originally diagnosed and treated at University Hospitals in Cleveland, and both trials have been through Case Comprehensive Cancer Center (joint effort between University Hospitals and Cleveland Clinic).

I wish the best for you and your family. Health decisions are very personal, no one can really know what is best except for you. I just wanted to provide some feedback to add to the mix.

Best always and lots of hugs,

Trisha

Clinical Trials at CWRU
Trisha (tb7),

Original DX in November 2009. Stage 4. I am receiving treatment at Cleveland Clinic - due to my insurance requirements.

I have been on the clinical trials "waiting list" at CWRU for a long time with no luck. What's the secret of your success?

tb7

Kenem said:

Clinical Trials at CWRU
Trisha (tb7),

Original DX in November 2009. Stage 4. I am receiving treatment at Cleveland Clinic - due to my insurance requirements.

I have been on the clinical trials "waiting list" at CWRU for a long time with no luck. What's the secret of your success?

Posted note responding to Kenem re Clinical Trials . . .
Something happened and it did not show up on the site . . . I will post again Monday evening after rewriting my note!

Unknown

tb7 said:

Posted note responding to Kenem re Clinical Trials . . .
Something happened and it did not show up on the site . . . I will post again Monday evening after rewriting my note!

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tb7

unknown said:

This comment has been removed by the Moderator

No green on my screen!
Hi William!

Thanks for the feedback . . . no big green message came my way! But, I should know better than to input directly to this site. I have labored and lost before. I was thinking when the post went into oblivion that maybe it was too long . . . but, then I thought of you. Your posts are long and many survive! I thought maybe there was some delay late at night, so thought it was best to just try again next day. I will put it up on Monday.

You are an amazing resource on this site! Thanks for all your time and effort!

Kind regards and respect always,

Trisha

P. S. Took your advice and did this in Word first!! Hope it gets through OK!