6 month scan done

jona187

They did a six month scan on my wife and found a 1 inch mass where my wife's kidney use to be

We are devastated at the moment.

My wife was diagnosed with stage 2 chromophobe kidney cancer. It was an 8 cm mass.

Her lungs were clear.

Vagusto

News
Hello
I'm so sorry to hear this. The initial cancer diagnosis is hard enough, much less hearing they found something else. I've had clean results for the last two years, and just had a scan where they found a small lesion on my remaining kidney. People say not to worry, but that is of no comfort given the fact that my Doctor said he's worried. I hope your wife can somehow find peace through what is ahead of her. I know how hard that can be. Take Care of yourself too.
Valerie

ejneary

Options
Jona:

Anytime you get the dreaded diagnosis, it is awful. In addition, you have just started a new family and this is supposed to be a time of happiness, not fighting a disease. Throw on top of that the stress of raising a child and honestly, I can't imagine the stress that you are both under though with two kids of my own, I can understand.

As far as treatment options, I am sure that surgery will be the first line of treatment for a solitary recurrence. The fact that she is clear everywhere else is very good. The doctors will have treatment options. Many people have had to go through multiple surgeries to get rid of the beast.

As far as the devastation is concerned, I can tell you that I know that feeling well. I spent many many weeks severely depressed and having visions of my own funeral and leaving my family behind after I was diagnosed the second time. My field of view collapsed down from thoughts of stuff that I really wanted to do later on in life to visions of laying helpless in a hospice ward.

I can't tell you both not to worry. It is natural especially having a family. My kids are 17 and 14 and I can tell you that you will NEVER feel like they are old enough to take care of themselves and that you are needed as a parent.

What I can offer is that you can't let cancer take away these moments of your life. The best thing that you can do is to help your wife and yourself regain some control over the beast. I am still living with stage IV cancer and the thing that turned around my anxiety and thoughts of death was using guided imagery to help me regain a feeling that I had some control over the beast and not just my doctors. Additionally, it has made me feel like I can conquer this beast and look forward to a long happy life. Gerald White has put together a great CD and book "Three Months to Life" and I suggest that you get a copy and get guided imagery CD that goes with it. I know that this sounds like an infomercial but I can personally vouch that this program has given me back hope where I had lost it. The program focuses on mind-body medicine and is meant to help your own immune system fight the disease. The feeling that I have now is that I have some control over my life again and that I have at least some way of affecting this disease by allowing me to fight it instead of accepting only what the doctor has to offer. This program is meant to augment the treatment options that you will be given, NOT replace them. Doing everything that you can to fight the beast means thinking "Outside the box" and I can tell you, I am an engineer and don't believe it until I see it. It was difficult for me to believe that this could help but after reading the book and using the CD twice a day for the last month and a half, I have realized that fighting the disease means not just letting the doctors be in control of my health. I had to have an active part in that and this program gives you the tools and the knowledge to understand how to do that. It has given me back the confidence that I know that I will beat this disease.

I wish you luck in your journey. Cancer sucks.

John

jona187

ejneary said:

Options
Jona:

Anytime you get the dreaded diagnosis, it is awful. In addition, you have just started a new family and this is supposed to be a time of happiness, not fighting a disease. Throw on top of that the stress of raising a child and honestly, I can't imagine the stress that you are both under though with two kids of my own, I can understand.

As far as treatment options, I am sure that surgery will be the first line of treatment for a solitary recurrence. The fact that she is clear everywhere else is very good. The doctors will have treatment options. Many people have had to go through multiple surgeries to get rid of the beast.

As far as the devastation is concerned, I can tell you that I know that feeling well. I spent many many weeks severely depressed and having visions of my own funeral and leaving my family behind after I was diagnosed the second time. My field of view collapsed down from thoughts of stuff that I really wanted to do later on in life to visions of laying helpless in a hospice ward.

I can't tell you both not to worry. It is natural especially having a family. My kids are 17 and 14 and I can tell you that you will NEVER feel like they are old enough to take care of themselves and that you are needed as a parent.

What I can offer is that you can't let cancer take away these moments of your life. The best thing that you can do is to help your wife and yourself regain some control over the beast. I am still living with stage IV cancer and the thing that turned around my anxiety and thoughts of death was using guided imagery to help me regain a feeling that I had some control over the beast and not just my doctors. Additionally, it has made me feel like I can conquer this beast and look forward to a long happy life. Gerald White has put together a great CD and book "Three Months to Life" and I suggest that you get a copy and get guided imagery CD that goes with it. I know that this sounds like an infomercial but I can personally vouch that this program has given me back hope where I had lost it. The program focuses on mind-body medicine and is meant to help your own immune system fight the disease. The feeling that I have now is that I have some control over my life again and that I have at least some way of affecting this disease by allowing me to fight it instead of accepting only what the doctor has to offer. This program is meant to augment the treatment options that you will be given, NOT replace them. Doing everything that you can to fight the beast means thinking "Outside the box" and I can tell you, I am an engineer and don't believe it until I see it. It was difficult for me to believe that this could help but after reading the book and using the CD twice a day for the last month and a half, I have realized that fighting the disease means not just letting the doctors be in control of my health. I had to have an active part in that and this program gives you the tools and the knowledge to understand how to do that. It has given me back the confidence that I know that I will beat this disease.

I wish you luck in your journey. Cancer sucks.

John

John,
It was quite
John,

It was quite devastating to hear this. I had the same visions of me raising my new born son by myself and losing my wife. It is all quite heart breaking. The kicker in all this was that the doctor had the CT Scan result and did not call us. We had to call him after 3 weeks and we finally got a response. We are definitely looking for another doctor now.

Someone recommended http://berniesiegelmd.com/products-page/ which kind of sounds like Gerald White's product. I will definitely be getting one of these for my wife and myself.

It has been heart breaking as well because my wife was physically recovered and was going to start school this fall to finish her teaching degree, but now it might look like another surgery so we will have to put that on hold.

I will definitely tell my wife about guided imagery. I definitely believe there is a connection with the body mind and soul as well as good nutrition to beat this thing. The stress of raising a new born especially at the teething stage has tested our limits but he is a gift none the less

I have been working with my wife to fix her nutrition but its hard to fix 28 years of bad habits.

As a new parent, I can definitely appreciate and understand this thought:

I can't tell you both not to worry. It is natural especially having a family. My kids are 17 and 14 and I can tell you that you will NEVER feel like they are old enough to take care of themselves and that you are needed as a parent.

I wish you luck and appreciate the support.

i wish you a good journey as well

MikeK703

Can't even imagine
I can't even imagine the disappointment and despondency you and your wife must be feeling right now. At any age, but especially for somebody so young, it just doesn't seem fair. I'm so sorry this happened and pray that things turn around for you.
Mike

BG

I'm sorry
I am very sorry you and your wife are going through this. The lungs being clear is a key factor. I have seen other cases in which this has happened, and surgery is the approach typically since this is an isolated tumor. I can not imagine what you are going through, but know we are here for you.

My prayers are with you, your wife, and family.

BG

jona187

BG said:

I'm sorry
I am very sorry you and your wife are going through this. The lungs being clear is a key factor. I have seen other cases in which this has happened, and surgery is the approach typically since this is an isolated tumor. I can not imagine what you are going through, but know we are here for you.

My prayers are with you, your wife, and family.

BG

Thanks to all of you. It's
Thanks to all of you. It's been a rough road but we just have to work a little harder now and stay vigilant.

It's been very hard since we had our new born son. I think it makes things 1000 times more scary for us. We just hope to rebound but today has already been a long day.

I'm definitely buying that imagery cd to help get us through these rough times.

I hope they can get it all out this time.

jona187

jona187 said:

Thanks to all of you. It's
Thanks to all of you. It's been a rough road but we just have to work a little harder now and stay vigilant.

It's been very hard since we had our new born son. I think it makes things 1000 times more scary for us. We just hope to rebound but today has already been a long day.

I'm definitely buying that imagery cd to help get us through these rough times.

I hope they can get it all out this time.

My biggest concern is that I
My biggest concern is that I hope my wife doesn't get depressed

I'm trying to stay positive, but I hope she doesn't dip into a sad depressed state because I fear she may get sick worse.

Minnesota Girl

If it's okay
I will add your family to my prayers.

BG

jona187 said:

My biggest concern is that I
My biggest concern is that I hope my wife doesn't get depressed

I'm trying to stay positive, but I hope she doesn't dip into a sad depressed state because I fear she may get sick worse.

staying positive
I had an appointment with my doctor today. I told him physically I am doing better, but emotionally and mentally are a different story. I explained I am afrad and uneasy. He recomended counseling if I felt this was not interfering with work and life at home. I said if wasn't to that point. The doctor indicated if it did get to that point he could prescribe medicine, I guess for sleep and depression. I am opting now to not get medicine. I understand the difficulty with your wife and the new addition to your family, medication may not be a viable option.

I am as well looking into the CD's previously mentioned. I am also reading a book called Anti Cancer, which explains ways to combat cancer on our own, diet, outlook, etc... I figure every little bit helps I hope. I hope these extras will also help you and your wife.

BG

jona187

BG said:

staying positive
I had an appointment with my doctor today. I told him physically I am doing better, but emotionally and mentally are a different story. I explained I am afrad and uneasy. He recomended counseling if I felt this was not interfering with work and life at home. I said if wasn't to that point. The doctor indicated if it did get to that point he could prescribe medicine, I guess for sleep and depression. I am opting now to not get medicine. I understand the difficulty with your wife and the new addition to your family, medication may not be a viable option.

I am as well looking into the CD's previously mentioned. I am also reading a book called Anti Cancer, which explains ways to combat cancer on our own, diet, outlook, etc... I figure every little bit helps I hope. I hope these extras will also help you and your wife.

BG

I actually read the
I actually read the anticancer book and I actually enjoyed it. My wife was reading it until a new Harlan Coben book came out lol

rae_rae

Minnesota Girl said:

If it's okay
I will add your family to my prayers.

I understand how you are
I understand how you are feeling- my world was turned upside down two months ago and I was so thankful everyone here was so supportive. Are the docs going to biopsy the mass? My prayers are with you and your family.

icemantoo

rae_rae said:

I understand how you are
I understand how you are feeling- my world was turned upside down two months ago and I was so thankful everyone here was so supportive. Are the docs going to biopsy the mass? My prayers are with you and your family.

Jona
I do not have any insight or knowlege regarding you pathology report. If I were you I would demand an explanation over the phone from the doctor without waiting for an appt.

By the way, nice photo.

Best wishes,

Icemamtoo.

jona187

icemantoo said:

Jona
I do not have any insight or knowlege regarding you pathology report. If I were you I would demand an explanation over the phone from the doctor without waiting for an appt.

By the way, nice photo.

Best wishes,

Icemamtoo.

Hey Iceman,
My wife
Hey Iceman,

My wife originally had a Stage II ChRCC (Chromophobe) in her right kidney. No spreading and lymph nodes were clean. They said it was encased, but I guess not. To be honest, we are going to see another specialist as this doctor has ticked me off for the second time. I had to call constantly call for three weeks to get the results and finally one day he decided to return our phone call. How nice of him. They said there is a one inch mass where her kidney use to be. They want to do another CT Scan but with contrast this time. She had a regular xray and CT Scan. I'm concerned for various reasons. There is an excessive amount of radiation she is being exposed to and there could be an extra strain on her kidney with the contrast being applied. The good news is I was able to get an appt with Dr Dutcher in NY. Many people on the Kidney-ACOR list recommended her and we are going to get a second opinion. Hopefully, she can be our primary point of contact going forward. Either way, our current doctor likes to hold information or just doesn't like to communicate. It's like pulling teeth. I think that he should be more talkative, but hey, I don't know the reasons why he isn't. Nor do I want an explanation from him. Our goal is to meet a few more specialist and feel them out. We want someone who is going to treat us properly as a patient as well as a human being.



Either case they want to remove the mass.

I don't want a biopsy, because if it is cancer, then it can possible spread to other parts of my wife's body.

DarrylPe

jona187 said:

Hey Iceman,
My wife
Hey Iceman,

My wife originally had a Stage II ChRCC (Chromophobe) in her right kidney. No spreading and lymph nodes were clean. They said it was encased, but I guess not. To be honest, we are going to see another specialist as this doctor has ticked me off for the second time. I had to call constantly call for three weeks to get the results and finally one day he decided to return our phone call. How nice of him. They said there is a one inch mass where her kidney use to be. They want to do another CT Scan but with contrast this time. She had a regular xray and CT Scan. I'm concerned for various reasons. There is an excessive amount of radiation she is being exposed to and there could be an extra strain on her kidney with the contrast being applied. The good news is I was able to get an appt with Dr Dutcher in NY. Many people on the Kidney-ACOR list recommended her and we are going to get a second opinion. Hopefully, she can be our primary point of contact going forward. Either way, our current doctor likes to hold information or just doesn't like to communicate. It's like pulling teeth. I think that he should be more talkative, but hey, I don't know the reasons why he isn't. Nor do I want an explanation from him. Our goal is to meet a few more specialist and feel them out. We want someone who is going to treat us properly as a patient as well as a human being.



Either case they want to remove the mass.

I don't want a biopsy, because if it is cancer, then it can possible spread to other parts of my wife's body.

Sorry to hear
Jona I'm sorry to hear of your families troubles. I've seen your past post and I can tell that the your a good man. Jona as others have said try your best to focus on every good moment in your life it will bring you strength when your down. I;ll say a special pray for you and your family . God bless .

Darryl

niprut

Keep fighting the hard fight
Hi Jona,

My thoughts are with your family too. News like that takes my breath away. Keep fighting the hard fight, and I hope your new specialist is of great assistance and fills you with lots more confidence moving forward.

Take care,

Jo

jhsu

I know how you feel. I have
I know how you feel. I have Stage IV RCC in 2008 with one recurrence a year after the first surgery. Always be prepared for the next recurrence is how I deal with my cancer for the rest of my life. The time in between is mercy from the God to let us catch a breath for the next battle.

You have cancer. Do not let that cancer have you.
Jon

garym

jhsu said:

I know how you feel. I have
I know how you feel. I have Stage IV RCC in 2008 with one recurrence a year after the first surgery. Always be prepared for the next recurrence is how I deal with my cancer for the rest of my life. The time in between is mercy from the God to let us catch a breath for the next battle.

You have cancer. Do not let that cancer have you.
Jon

Changing Docs
Hi Jona,

Very sorry to hear what your family are going through but early detection is still on your side and the prognosis is a lot better today than even a few years ago. In many cases this disease is harder on the caregiver than the patient, I'm glad my kids were grown when my family was tested. There is absolutely no excuse for your doctors lack of response, he sounds like a real (insert your favorite expletive here), giving him the heave ho was a good move.

Stay strong and remember to take care of yourself as well, a lot of thoughts and prayers are coming your way from your fellow travelers here.

Keep us posted,

Gary

jona187

garym said:

Changing Docs
Hi Jona,

Very sorry to hear what your family are going through but early detection is still on your side and the prognosis is a lot better today than even a few years ago. In many cases this disease is harder on the caregiver than the patient, I'm glad my kids were grown when my family was tested. There is absolutely no excuse for your doctors lack of response, he sounds like a real (insert your favorite expletive here), giving him the heave ho was a good move.

Stay strong and remember to take care of yourself as well, a lot of thoughts and prayers are coming your way from your fellow travelers here.

Keep us posted,

Gary

Yes, it has been extremely
Yes, it has been extremely hard on myself. Who would have thought since my wife was the one with the diagnosis. Since a few days have passed, I've been alot better and less stressed. It's time to get things in order.

I want to thank everyone for their comments and support.

Vagusto

jona187 said:

Yes, it has been extremely
Yes, it has been extremely hard on myself. Who would have thought since my wife was the one with the diagnosis. Since a few days have passed, I've been alot better and less stressed. It's time to get things in order.

I want to thank everyone for their comments and support.

Contrast
Hello

Glad that you're seeking another Doctor. My Doctor is always good about calling me back when I have questions. The surgery scheduler is another story. It took her two weeks to schedule the surgery. I would call and leave a message, and no return call. While I'm generally a very nice person, I did unload on her! She said that she was very busy. Hmmmmmmmmm.......

The contrast is hard on the kidney, but I think it's important so they can see as much as possible. My Doctor always runs a blood test to make sure my numbers are good prior to giving me the contrast. Maybe you could ask for this to be done?

My thoughts are with you and your wife. Living with the unknown is so so so hard!
Take Care
Valerie

jona187

Vagusto said:

Contrast
Hello

Glad that you're seeking another Doctor. My Doctor is always good about calling me back when I have questions. The surgery scheduler is another story. It took her two weeks to schedule the surgery. I would call and leave a message, and no return call. While I'm generally a very nice person, I did unload on her! She said that she was very busy. Hmmmmmmmmm.......

The contrast is hard on the kidney, but I think it's important so they can see as much as possible. My Doctor always runs a blood test to make sure my numbers are good prior to giving me the contrast. Maybe you could ask for this to be done?

My thoughts are with you and your wife. Living with the unknown is so so so hard!
Take Care
Valerie

Thanks for the thoughts and
Thanks for the thoughts and prayers.

I have heard this new doctor is very personable and is an expert in RCC. We are also going to Sloan as well for another opinion. I'm not taking any chances.

Hey Kidney numbers are good, but I need to make sure she protects that kidney. I just don't want her to develop an issues because of it.

Living with the unknown is so hard. I think alot of us, especially myself has taken that for granted. Now I know, appreciate the simple things in our daily life.

JQ