CSN Login
Members Online: 4

6 month scan done

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

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's picture
Vagusto
Posts: 86
Joined: Aug 2011

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's picture
ejneary
Posts: 64
Joined: Mar 2010

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's picture
jona187
Posts: 74
Joined: Apr 2011

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's picture
MikeK703
Posts: 235
Joined: Sep 2010

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
Posts: 85
Joined: Jun 2011

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's picture
jona187
Posts: 74
Joined: Apr 2011

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's picture
jona187
Posts: 74
Joined: Apr 2011

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.

BG
Posts: 85
Joined: Jun 2011

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's picture
jona187
Posts: 74
Joined: Apr 2011

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

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I will add your family to my prayers. :)

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

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's picture
icemantoo
Posts: 1547
Joined: Jan 2010

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's picture
jona187
Posts: 74
Joined: Apr 2011

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's picture
DarrylPe
Posts: 75
Joined: Mar 2011

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
Posts: 23
Joined: Jul 2011

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's picture
jhsu
Posts: 78
Joined: Sep 2009

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
jona187
Posts: 74
Joined: Apr 2011

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's picture
Vagusto
Posts: 86
Joined: Aug 2011

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's picture
jona187
Posts: 74
Joined: Apr 2011

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

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

I hope you have better luck with your next Dr. On my six month scan they saw a mass on my opposite side of my right kidney removal. I had it biopsied and that came out negative but my Dr is still uneasy about it. I also have fallopian tube cancer unrelated to the kidney cancer.
I have two grown daughters and four beautiful grandchildren and the time goes by so fast that beautiful baby of yours will be grown in a blink of an eye. Try not to let cancer or anything take more of your happiness with your family, live your life and enjoy your family. We cannot control our fate but we can control how we deal with it. Your wife is a lucky woman to have you with her. Good Luck.
Colleen

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

First, thanks for the baby pic! Has it really been this long?

Second, I'm walking a colleague through a kidney cancer diagnosis right now, and her original doc treated her the same -- didn't call her for 3 weeks after he already knew the results. That's just so unacceptable I can hardly contain myself. She's now with my doc and loves his communication and sense of humor. Definitely seek out those better docs.

When is her ct with contrast scheduled? On the one hand, it's not unusual for an 8cm mass to have a recurrence. But it's also not unusual for this new mass to be something else, like an adhesion or scar tissue or a fur ball or something. : ) As someone mentioned above, this time around you have the benefit of early detection, which you didn't have before.

The bummer here is the thought of yet another surgery. But it's worth it. We'll keep having those scans and just take care of anything that might pop up at any time. We're all in the same boat. Early detection. Always early detection.

Kudos to you for being such a loving and caring husband!

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Hey Jamie!!!! How are you doing? It's been this long!!!! Can you imagine. It's great to hear from you.

We basically got a new oncologist and she is FANTASTIC. She treated us like human beings, was honest, had a sense of humor, and is very knowledgeable. I haven't had much time to post as often as I would like because I'm working full time, a part time, school and now parenting. I wanted my wife to stop working and stay home with the baby and just enjoy life. I basically told her to do what makes her happy. So besides taking care of the baby, she's gone back to school to become a teacher (career change) and she has alot more time to do what she wants. Going through this has given us both a better appreciation of time and life.

The great news finally came after the second scan with contrast. Part of the intestine started dropping where the kidney use to be. That was the one inch mass. They could not tell without contrast. So that was great news.

I really hope you are doing well and please keep me updated on any news about your journey. I will try to post more often, but my it's been quite hard.

I hope the Iceman is doing well too!!!!! Thanks for all your help!

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

So very happy to hear the good news! I am so happy for you all!
Be blessed!
Rae

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network