New diagnosis for my husband and I am here looking for support and information!

jonibeth2

Hello everyone. I have been reading some encouraging stories on esophageal cancer survivors. This has really been the first place for me to find some hope. My husband was diagnosed July 31st in Missoula Montana, where we had just moved to from Kansas City. At that time we did not think it had spread and we would need to find somewhere else for surgery (down the road) so we made the decision to drive back to Kansas City and see an oncologist at KU MED and also a surgeon here, since this is where we had lived for over 20 years. My husband is 53, and was a long time smoker, but he has now quit (thank goodness).  We had PET scans, CT scans, bloodwork, etc and everything looked "clear" - but when the surgeon put the chemo port and the J feeding tube in last Friday, he looked around in his abdomen and found that the cancer had in fact spread in his abdominal lining. We were devastated. We were told surgery was no longer an option. We are in week 1 of chemo once a week and radiation 5x a week for the next 5 weeks. We have not been real impressed with our care and team of doctors here and I am wondering where else we should/could go once we complete this round of treatment.  I have called MD Anderson, and I was told we needed to wait to see them until he is finished with this first round of treatment (5 weeks). I called Johns Hopkins also- where would one suggest we go from here if we want to get another opinion for esophageal cancer, stage 4. The only thing it has spread to is his abdominal lining, which the PET scan could not even pick up. He is tolerating the radiation ok so far and we have only had one day of chemo, which made him a little nauseated but he did not throw up thank goodness. I expect this will get worse before it gets better. But feel I have been given very little hope and that is why I came here. It sounds like there are others out there with stage 4 that are beating this and I sure hope that will be the case with my husband. Thank you in advance for any advice....Joni in Kansas City.

paul61

You will find a number of Stage IV survivors here

Joni,

I am so sorry that you find yourself here. 53 is really very young for a diagnosis of esophageal cancer. You mentioned that your husband is a long time smoker. If the esophageal cancer that he has is adenocarcinoma, smoking really has very little to do with it, but it is good that he quit for his overall health.

If your husband’s tumors were so small in his abdomen that they were not detectable with a CT scan there is every hope that they may respond well to chemotherapy. Since a “j-tube” was placed I assume your husband is having some issues swallowing. That should improve with chemotherapy and radiation treatment.

I would definitely seek a second opinion at a leading cancer treatment center like MD Anderson, Mayo Clinic, University of Pittsburg Medical Center, Sloan Kettering, or University of Michigan Medical Center. At 53, hopefully with no other significant medical issues, your husband should have a very good chance of a long term period of remission.

I would also recommend another internet resource where you will find other Stage IV survivors living with cancer. The URL is https://www.smartpatients.com . Smart Patients is made up of communities specific to a type of cancer, so you want to join the esophageal cancer community.

Wishing your husband and you the best results as you complete his treatment.

 Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

Itsmesuzy51

paul61 said:

You will find a number of Stage IV survivors here

Joni,

I am so sorry that you find yourself here. 53 is really very young for a diagnosis of esophageal cancer. You mentioned that your husband is a long time smoker. If the esophageal cancer that he has is adenocarcinoma, smoking really has very little to do with it, but it is good that he quit for his overall health.

If your husband’s tumors were so small in his abdomen that they were not detectable with a CT scan there is every hope that they may respond well to chemotherapy. Since a “j-tube” was placed I assume your husband is having some issues swallowing. That should improve with chemotherapy and radiation treatment.

I would definitely seek a second opinion at a leading cancer treatment center like MD Anderson, Mayo Clinic, University of Pittsburg Medical Center, Sloan Kettering, or University of Michigan Medical Center. At 53, hopefully with no other significant medical issues, your husband should have a very good chance of a long term period of remission.

I would also recommend another internet resource where you will find other Stage IV survivors living with cancer. The URL is https://www.smartpatients.com . Smart Patients is made up of communities specific to a type of cancer, so you want to join the esophageal cancer community.

Wishing your husband and you the best results as you complete his treatment.

 Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

Esophageal cancer & marriage stress

Glad I found this page!  My husband,  age 63, was diagnosed in late March of this year.  He received radiation and chemo,  surgery (Lewy -something) was set for late June.   EUS showed tumor significantly shrunk,  eating better,  gaining weight. Laproscopy done 3 days prior to surgery showed metastatis in the abdominal cavity.  Surgery no longer an option. Go for another scan in early September.   MY  question or concern is,  he is very difficult to live with.  I never know what is going to set him off,  and he can be quite vicious & hostile.  He is only like this with me.  He has zero responsibility around the house,  he helps his brother in his shop every day,  but comes home & goes to sleep.   He sleeps all day Saturdays, goes to church on Sunday  & comes home & sleeps.  He opted to not do chemo. Esophageal  cancer #  We have been married 41 years.  I am fearful our marriage will not survive this.  (I have MS and lupus) 

paul61

Itsmesuzy51 said:

Esophageal cancer & marriage stress

Glad I found this page!  My husband,  age 63, was diagnosed in late March of this year.  He received radiation and chemo,  surgery (Lewy -something) was set for late June.   EUS showed tumor significantly shrunk,  eating better,  gaining weight. Laproscopy done 3 days prior to surgery showed metastatis in the abdominal cavity.  Surgery no longer an option. Go for another scan in early September.   MY  question or concern is,  he is very difficult to live with.  I never know what is going to set him off,  and he can be quite vicious & hostile.  He is only like this with me.  He has zero responsibility around the house,  he helps his brother in his shop every day,  but comes home & goes to sleep.   He sleeps all day Saturdays, goes to church on Sunday  & comes home & sleeps.  He opted to not do chemo. Esophageal  cancer #  We have been married 41 years.  I am fearful our marriage will not survive this.  (I have MS and lupus) 

It sounds like depression

Suzi,

I am sorry that you and your husband find yourself in this difficult situation. It sounds like your husband is having a “typical” reaction to a diagnosis of cancer. I know when I was originally diagnosed, I oscillated between fear and anger about the current state of my life at that time. I am sure your husband is frustrated and frightened about the current state of his health and what may come next.

Since it sounds like he has opted out of further treatment after the discovery of metastasis to his abdomen there is slim chance things will improve in the area of eliminating his cancer. He may just be trying to work his way through how he is going to cope with the decisions he needs to make about the rest of his life. If the scan in September shows additional growth he will need to make a decision about palliative care.

Many oncology practices include a phycologist on staff to help patients and couples with the stress that a cancer diagnosis brings to the patient’s life and to the couple’s marriage. If your oncologist does not have this kind of resource on staff perhaps they can refer you to the American Cancer Society for a resource there.

It is certainly no sign of weakness to seek help in this area, many people receive counselling and medication to deal with issues in this area as they deal with cancer.

It is going to take time on his part as he works his way through this diagnosis, and unfortunately, probably a lot of patience and perseverance on your part.

I would encourage you to discuss this with his oncologist as you would any of the other cancer related issues he has encountered.

I hope things improve soon,

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

 

Tina Blondek

paul61 said:

It sounds like depression

Suzi,

I am sorry that you and your husband find yourself in this difficult situation. It sounds like your husband is having a “typical” reaction to a diagnosis of cancer. I know when I was originally diagnosed, I oscillated between fear and anger about the current state of my life at that time. I am sure your husband is frustrated and frightened about the current state of his health and what may come next.

Since it sounds like he has opted out of further treatment after the discovery of metastasis to his abdomen there is slim chance things will improve in the area of eliminating his cancer. He may just be trying to work his way through how he is going to cope with the decisions he needs to make about the rest of his life. If the scan in September shows additional growth he will need to make a decision about palliative care.

Many oncology practices include a phycologist on staff to help patients and couples with the stress that a cancer diagnosis brings to the patient’s life and to the couple’s marriage. If your oncologist does not have this kind of resource on staff perhaps they can refer you to the American Cancer Society for a resource there.

It is certainly no sign of weakness to seek help in this area, many people receive counselling and medication to deal with issues in this area as they deal with cancer.

It is going to take time on his part as he works his way through this diagnosis, and unfortunately, probably a lot of patience and perseverance on your part.

I would encourage you to discuss this with his oncologist as you would any of the other cancer related issues he has encountered.

I hope things improve soon,

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

 

Your Husband

Hi Suzi

Welcome to our family of EC victims and survivors! I was a caregiver for my dad. He passed away from EC which went to his liver

in March 2010. Being a main caregiver is a very difficult job. The victim of this horrible cancer has only you to turn to. You are

his sounding board. He has to vent. I had my dad start writing in a journal to put down all of his thoughts and feelings. This

helped him tremendously. It is your husband's decision to either have treament/surgery, or not. As his caregiver, you have

to accept this. What I learned was to listen. Not to debate with my dad. Communication is key. Let your husband know that

how he is treating you is hurting your feelings. There is also a discussion board here for caregivers. It is also very helpful.

I am hoping I have helped you. We will be thinking of you both. Keep in touch!

 

Tina in Va