CSN Login
Members Online: 3

You are here

Wife of a cancer survivor

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Just checking in to say "HI"

I just updated a little of my "about me".  Please read and provide feedback.  I'm confused and learning.  I will know more tomorrow.

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

I'm new and just need someone to hold me pwease I'm scared!  Here is my About Me pasted for feedback:

We were only dating at the time but around 12/5/2012 my (now husband) boyfriend had a tumor and laparoscopic resection of the right kidney.

Around 6/7/2014 - We thought my husband had kidney stones but they ran extra tests.

On 6/11/12 we met with an oncologist and she "said" my husband has stage 1 recurring kidney cancer that has metastasized (he has 2 tumors in the lungs and several in the abdomen).

On 6/17/2014 we are going to MD Anderson to get a second opinion because what I have learned online is that you can't be both "Stage 1" and "recurring and metastasized" together.

My husband has rheumatoid arthritis and high blood pressure.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi Lil... welcome to our little club.. the one you do not want to join... but welcome anyway..  Only comment is I think that one date should be 2014 and not 2012.. but it makes sense anyway.

Yes, can't be stage 1, and it can't be grade 1, as the grade comes with the Pathology report.   But MD Anderson will sort him out.. they are very good..!  So, if he got proper CT Scans, they should know how big those Mets are. If possible take all his history and scans with you.  There are many good drugs out there... and more on the way.  But first the surgery and then the pathology report.  This will tell the rest of the story.  Hang in there..

Holler at us when ever you feel the need... I know more people will chime in soon..

Ron

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi, I am so sorry to hear about your husband, I know how frightened you right now. I also had reoccurring kidney cancer stage 1. I had a partial nephrectomy to remove a tumour under 5cm, and within eight months it had metastasized. I have tumours around the original site, medastan between my lungs, in both lungs, also cancer in my lymph. There are some pretty successful treatments around now, they are not curative but can keep the cancer under control. I am on Votrient at the moment, this has been my first line of treatment so far.

You are very wise getting a second opinion, I assume you are seeing a kidney Oncologist. They will come up with a plan to help your husband fight this. Don't despair, stay as positive as you can, it's difficult I know. I will be thinking of you both and keeping you in my prayers. You are not alone, we will support you through this, sending you a big HUG:)

 

Djinnie xx

APny's picture
APny
Posts: 1981
Joined: Mar 2014

I am so sorry what you and your husband are facing and you both must be so devastated. I’m hoping for the best and that whatever treatment they choose for him works.

 

I seem to remember reading that you always remain the stage with which you original were diagnosed, even if it recurs or metastasizes later. The first time you’re diagnosed no, you can’t be both stage 1 and metastatic. But if it’s later, I think I read that you retain your original stage but it then becomes stage 1 with local recurrence or stage 1 with distant recurrence (mets). I may be wrong in remembering; not sure.

 

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Glad you found this site and sorry for all you and your hubby are enduring.

Know that you won't go through this alone, but here, we offer understanding and support, no matter what.

Sending you a warm hug~let us know how YOU are doing ok? We'll walk this journey along side you both.

Jan

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

at MD Anderson. Start over from there.

neelcancer
Posts: 3
Joined: Jun 2014

I am so sorry to hear about your husband, It is a wise decision to take a second opinion and as we know about medical advancement so stay positive your husband will be cured for sure...:)

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

I wanted to give yall feedback before I respond to everyone.

The appointment was great.  He seemed more knowledgeable and positive.  Plus they handle everything.  They setup the appointment with the urologist.  They setup the Cat scans and pet scans.  I didn’t have to make the other appointments.  They setup our next appointment with the oncologist in a reasonable timeframe. 

So he recommended we start with Votrient on Wednesday and see how he responds.  In 3 months we will go back for rescans.  Surgery is an option down the line.  The other oncologist recommended first surgery then 4 weeks later Votrient. He said the treatments are improving by the day and has drastically improved since his last surgery 2 years ago. 

Yall, I’m sorry if this seems incentive please be gentle with my ignorance but I want to be realistic. I asked him if the best case scenario is that we fight and continue to fight that it is realistic to think we will be ok for 13 plus years.  He said he could say that a very short time ago advanced kidney cancer would make it 24 months. I was too scared to press him for what that meant in fear of worrying my husband.  Does that mean this fight is a 2 year battle or that 2 years used to be the life expectancy?  Me and my husband are very optimistic people.  However I am more of a realist and he is more of a “head in the sand” type of person.  I’m beating myself up for asking and still wanting an answer L

 

GSRon

Thanks for being here

You are right!  One of my dates should be 2014 and not 2012!  I can’t figure out how to change it.  J

 

DJinnie

My husband starts Votrient on Wednesday.  We are expected to meet with an Oncologist before Wednesday.  Fingers and toes crossed!  Thanks so much for your prayers.

 

Apny

Thanks for your feedback.  I am reading until so much info it is hard to absorb it all.

 

Jan4you

Thanks for the HUG! And I’m sending one right back at you!

 

Foxhd

Thanks you for the advice.  I’ve read some of your posts and you seem like a real positive straight shooter! J

 

Neelcancer

Thank you for putting the word “cured” in your post.  From what I read some of the battle is the battle of the mind!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi, 

I am glad to hear everything went so well, it sounds like you are in good hands now. Sometimes it takes a little footwork to find the right team of Doctors, the Oncologist has to be a good fit. It took me awhile to find one I was happy with. Are they starting your husband on 800 mg?

Nothing comes with any surefire guarantee, staying optimistic is the best way to be. Being a realist or a head in the sand type, I think maybe a little of both works. I am very aware of my predicament but I would not pose the question of time limit. We are all different, so many things factor into a life expectancy, who could possibly supply a definitive answer. Who would want to work toward a timeline?just work toward a future, it is less restrictive:)

All the best with the meds:)

 

Djinnie x

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Djinnie Thanks!  We always say we are so different we compliment each other.  I don't know the dose yet, we find out Wednesday. I really appreciate your feedback.

donna_lee's picture
donna_lee
Posts: 939
Joined: Feb 2009

What a Bi.... to join this club. But welcome, anyway.

You will find that there are new letters and numbers attached to your hubby's diagnosis.

Because it has gone (metastasized) beyond the kidney, is is Stage IV.  Then, it's described with  T#N#M# .

T(Tumor) #.  T1 is a tumor under 7cm. T2 larger than 7cm.

N may have nothing after it if no positive nodes have been found.  Or N1 is if there have been positive nodes found but an undetermined number.

M may have nothing if there is no mets to another organ. Or M1 if there are mets to at least one positive organ.

The MD Anderson doc who said 24 months----that was an old number for several years ago.  Prior to the develpment and testing of several of the newer drugs such as Votrient.

To give you lots of hope, I was told at Dx that I might live 5-7 months without any treatment.  I had a very lengthy and invasive surgery to remove right kidney, set of nodes, left half of liver and several biopsy wedges from the right lobe, and a congenitally defective gall bladder.  When it was over and the path came back, I was thrown into the research pot of Stage IV, T2,N1,M1.  That was 8 years ago.  It recurred over the following two years in single nodes, which were both removed.

So put on your work clothes and prepare to get him through this situation.  Then put on your party clothes to celebrate every year.

Good Luck.

Donna

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

It is a scary time for you, I am sure. And I am like you in the way that I would want to know the prognosis....and had to fight with yourself as to how to delicately put it! And then to still not get the answer!! Ugh.

I am not one of the medically knowledgeable members on this forum, but I see you are already getting good advice. I just wanted to reach out and give you a warm welcome to this lovely group. We are here to help you in any way we can!

Big Hugs,

Jojo

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Cheatinlil,

 

Please hang in there and remain tough and focused on what you need to do.  I know, as I am going through it now, this can be very difficult and sad.  However, your positive approach, encouragement and love/support is the best thing I could imagine for your husband right now.  I know in my situation I feel better about things when my wife is encouraging.  It can be difficult I know.   I am very new at this and I too am considering the MD Anderson approach.  I have an appointment today and next Thursday with another provider, but I hear really good things about MD Anderson.  I believe that they have to give you the statistical #'s and the worst case scenario so that you do not get over promised.  Take it day by day, step by step and do the best you can to focus on the here and now and what you can do today to maximize your time and success in fighting this dreaded disease.  When you win the battle you will know that it was difficult, but nothing worth fighting for is every easy.  That is how I am looking at it, rightly or wrongly.  It is what keeps me pressing forward!    

 

Again, I am completely new to this, have a skewed sense of reality because I simiply do not know.  I am trying to remain positive and offer to you a prayer for you and your husband. 

 

Take Care!

TBuck1971 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Overall, Votrient is good stuff.!  But if you read the stories here, it can be very hard on the Liver, so blood tests are needed, OFTEN..!  It can take months for the Liver enzymes to go whacky...  Also, I hope you like white hair.. it will turn his hair white, everywhere...yes there too...  Other side effects often (but not always) include fatigue, diarrhea, and high blood pressure.  Suggest you get a home blood pressure monitor and use it at least twice a day.  First signs of it going up, call the Dr to get meds for it.  

As you can see... we all are here for you...

Good Luck..!

Ron

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Donna Lee

Thank you for the lesson!  I’ve been seeing T#N#M# but now I understand it!  Although I’m deeply sorry for how you learned it L

When I read my husband’s radiology report.  I don’t see any T#N#M#.  Which is probably why MD Anderson is having us redo the Cat scan and pet scan on Friday at their facility. 

I picked out several of the key statements used: 

Soft tissue mass (mentioned 4 times in reference to the kidney - the biggest is 8 x 5 x 5)

Soft tissue nodules (mentioned 8 times and five times it says multiple scattered).

Mestatic neoplastic process

When I get the MD Anderson results I will refer back to your post. 

JoJo61

Thanks for your big hug and right back at ya!

Tucker

They did not give me the statistical #'s and the worst case scenario.  You have just given me an idea for a new post about FLMA.  Please provide feedback there to see the one positive reason I want to know. 

I love your statement:  nothing worth fighting for is every easy. I say that to people all the time!  I needed to hear that. 

 

GSRon,

You cracked me up with the white hair “there” statement.  To me my husband is the most handsome guy in the world.  He can be fat, skinny, white hair, no hair.  I love that guy! J

I will look into how to get a home heart monitor thanks for the advice.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Ah er NO... ya don't wanna go there...  all those stats are outdated... all they do is scare you big time.  Let me put it this way.. according to the stats, I became a ghost about 2 years ago..  Boo..!

There are so many new treatments that are available just within the last 2 years.  Votrient is one of the newer drugs...  And FYI we got some 20 plus year people around here... if you search for that post, you will see a bunch of them telling their tales..  The main thing is to move forward.. hard to do.. but try...

See you in 20 years... we can have a good laugh..

Ron

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Thanks GSRon, it's a date! Me, you and my hubby will see you here in 20 years 6/18/2034.  :)

Subscribe to Comments for "Wife of a cancer survivor"