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My husband just diagnosed

Lylesmyprince's picture
Lylesmyprince
Posts: 140
Joined: Feb 2010

I am seaching for answers and many are scarey! My husband is a dialysis patient and began having trouble swallowing. The endoscopy found cancer...about 7 cm tumor...seems small. Next test was a CT scan which we were told no spread of cancer...but no one could give us a stage. Later that night the doctors office called again and said they wanted my hubby to have and endoscopy with ultrasound...someone would call us with an appointment time. I guess they want to take a closer look at the liver and pancreas. Then...I guess we will get a stage.Well...four days later...we still haven't heard. We have tried to connect...but no luck so far. After this next test we are supposed to have a consult with a surgeon and there may be a need for chemo. I guess I am concerned about the wait...and possible spread if we don't get moving on this. Also, has anyone had the surgery and been a dialysis patient. What if surgery is not an option???? Thanks...Susie

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

My husband had the surgery back in July he was a Stage 2 I can help you on the surgery but not on the dialysis part, I believe there is someone on here that has dialysis though and hopefully they will respond, welcome to our family on CSN, we all are here for each other, we laugh cry vent, and hopefully help each other. I am the one that can tell you just about anything that goes on in surgery or afterwards won't go into detail until you find out what they are going to do and then maybe I can help.

We are all here for the same reason to fight THIS DISEASE CANCER!!!!!!!!!!!!! and we all hate it.

If I can help further

Lori AKA MOE

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Weezie would know here husband had a kidney transplant and I don't think he can have surgery.
or chemo at this time according to her last post.

Check out here post and see.

God Bless
kathy aka mumphy

Lylesmyprince's picture
Lylesmyprince
Posts: 140
Joined: Feb 2010

Thank you for your response. I will be glad to lean on you when needed. We have just come out of the "numb" state and yesterday and today have been the first days I haven't felt like my emotions are completely out of control!!! What a rollercoaster! We have so much to learn and decide on...we are only at the very beginning of this journey. Ugh!! It can feel overwhelming if you linger on the "what ifs". I am trying not to do that! Susie

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi Susie,

You are right and it's o.k to be numb, after 9 mos I still am on certain days. The what ifs will come and go. I hope that you get good test results and they do take time.

Please don't worry to much about them taking there time right now. There are the mri's,pet scans, endoscopic ultasounds and etc. all of this is for stageing purposes and to devise a treatment plan specific to the needs of the patient.

Lori and I and many more unfortunatly have been on that same rollercoaster!

We all have the same thing in common and that is this horrible disease.

My husband Al was diagnosed with stage iv and had his surgery, now we are fighting with mets to his spine.

Remember someone is always here to listen.

God Bless,
Kath

Lylesmyprince's picture
Lylesmyprince
Posts: 140
Joined: Feb 2010

Thank you for telling me that you still feel numb at times. That helps me feel "normal". I thought that kidney disease would be our big fight. But...now this! I find myself concerned about his already weak body trying to fight this cancer...then I remember that Lyle and I have put our lives in the Lord's hands...and He is gracious. His plan for us is the best...we have to just take the journey as He gives us what we can handle. Still...I look at my husband and I don't want him to have to go through any of this! That is where my heart breaks. It is nice to be on here and chat with others who understand and can mentor me through this process! Thank you!! Susie

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Dear Susie,
Welcome to our csn family! I am a caregiver for my dad, Ray, soon to be 71, dx with ec 11/08. Had chemo and radiation for six weeks, beat it. Never had surgery. Fast forward to Dec 2008, had severe pain on right side, was jaundice, admitted to hospital for 8 days. Had a blocked bile duct in his liver, and found leisons on his liver. Cancer has now methasized to his liver. Had stent put in bile duct, had stent put in esophagus, all is better. For the moment. Now he has started an oral chemo, Xeloda for the cancer in the liver. So far so good. You have to take this journey one day at a time, and some days you must take it one hour at a time. Do not think too far ahead of yourselves. Enjoy the good moments, do not dwell on the bad moments. Come to this site often. It is a great place to vent, make new friends, and find out a world of information. You and your husband are being added to my prayer list. I also have a blog on here if you want to stay updated with my and my dad's story. Keep in touch.
Tina

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Dear Susie,
Welcome to our csn family! I am a caregiver for my dad, Ray, soon to be 71, dx with ec 11/08. Had chemo and radiation for six weeks, beat it. Never had surgery. Fast forward to Dec 2008, had severe pain on right side, was jaundice, admitted to hospital for 8 days. Had a blocked bile duct in his liver, and found leisons on his liver. Cancer has now methasized to his liver. Had stent put in bile duct, had stent put in esophagus, all is better. For the moment. Now he has started an oral chemo, Xeloda for the cancer in the liver. So far so good. You have to take this journey one day at a time, and some days you must take it one hour at a time. Do not think too far ahead of yourselves. Enjoy the good moments, do not dwell on the bad moments. Come to this site often. It is a great place to vent, make new friends, and find out a world of information. You and your husband are being added to my prayer list. I also have a blog on here if you want to stay updated with my and my dad's story. Keep in touch.
Tina

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Dear Susie,
Welcome to our csn family! I am a caregiver for my dad, Ray, soon to be 71, dx with ec 11/08. Had chemo and radiation for six weeks, beat it. Never had surgery. Fast forward to Dec 2008, had severe pain on right side, was jaundice, admitted to hospital for 8 days. Had a blocked bile duct in his liver, and found leisons on his liver. Cancer has now methasized to his liver. Had stent put in bile duct, had stent put in esophagus, all is better. For the moment. Now he has started an oral chemo, Xeloda for the cancer in the liver. So far so good. You have to take this journey one day at a time, and some days you must take it one hour at a time. Do not think too far ahead of yourselves. Enjoy the good moments, do not dwell on the bad moments. Come to this site often. It is a great place to vent, make new friends, and find out a world of information. You and your husband are being added to my prayer list. I also have a blog on here if you want to stay updated with my and my dad's story. Keep in touch.
Tina

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Dear Susie,
Welcome to our csn family! I am a caregiver for my dad, Ray, soon to be 71, dx with ec 11/08. Had chemo and radiation for six weeks, beat it. Never had surgery. Fast forward to Dec 2008, had severe pain on right side, was jaundice, admitted to hospital for 8 days. Had a blocked bile duct in his liver, and found leisons on his liver. Cancer has now methasized to his liver. Had stent put in bile duct, had stent put in esophagus, all is better. For the moment. Now he has started an oral chemo, Xeloda for the cancer in the liver. So far so good. You have to take this journey one day at a time, and some days you must take it one hour at a time. Do not think too far ahead of yourselves. Enjoy the good moments, do not dwell on the bad moments. Come to this site often. It is a great place to vent, make new friends, and find out a world of information. You and your husband are being added to my prayer list. I also have a blog on here if you want to stay updated with my and my dad's story. Keep in touch.
Tina

weezie47
Posts: 22
Joined: Dec 2009

Susie
Sorry it took me so long to post, but the past month has been hell for me. Don't have time to go in to it because I need to get back to the hosp. I just wanted to answer some of your questions. My husband is a transplant receipient. He is currently on dialysis because the docs chose to give him chemo along with the radiation. Hopefully it is temporary. He is now having heart problems which they are trying to figure out why. I think the chemo has just wrecked his body because it was weak to begin with. They did stop the chemo after 1 round. He had citsplatin and 5FU. My advice would be to ask questions and do your own research. Be sure to consult HIS nephrologist and a nephrologist where you will be getting his treatment. The oncologist and nephrologist MUST be on the same page and be willing to listen to you and his wishes. I pray that God will guide you through this awful journey. I will keep you and your family in my prayers. Keep the Faith!
Weezie

Lylesmyprince's picture
Lylesmyprince
Posts: 140
Joined: Feb 2010

Thank, Weezie! I will be sure that we aske that question about how the nephrologist and the oncologist will work together. I know that our next step is to see the oncologist and have some treatment prior to seeing a surgeon. I think about the weakened state of his body...and doing the chemo. Lyle has polycystice kidneys and I wonder what the radiation will do to the cysts. We have delt with enternal bleading before from the cysts. I know we have quite a journey. He's such a honey...I hate seeing him suffer!!

Praying for you and your husband! I pray that the new kidney will kick back in and that the dialysis is just a break for the kidney.

Susie

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