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Update on my husband...

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

Well today was the day Mark (hubby) saw the specialist and the news isn't good but it could have been worse.

First, his lungs look fine. No sign of whatever they saw on last chest scan. This is a relief.

However, there is definately a new mass in the same kidney as last march. This means, he will be having surgery again and we await word when. I we know is November. His surgeon is meeting with her collegues to see if another partial or the whole kidney, this time. Her fear is that he may have simething called Birt-Hogg-Dupe syndrome and doesn't want to leave him with just one kidney if possible.

This new mass wasn't there 8 months ago and is just about 1cm. We hardly know what to think. Need time to proess, I suppose.

 

Wishing you all the best,

Heather

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

First, "Live to see another day." Believe it or not, it gets easier getting used to changing disease status. Most of us go through progression and regression of our tumors. Now you will always be closely monitored allowing for appropriate intervention quickly. It sounds like more surgery but don't worry about it. I'm convinced that we recover from just about anything they can do to us. It's all for reaching the the goal of NED. Go with your dr.s plan. The tumor is small. I haven't had any secondary mets removal, but I may persue it based on my current therapy outcome.

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

Live to see another day is right! Btw, how are you doing? I certainly hope better than you imagined!

 

 

icemantoo's picture
icemantoo
Posts: 1477
Joined: Jan 2010

Alehan, If it were me i would get the full.

Oops, alreqdy did that.
What do I know. They did not have piartals 11 years ago.

Seriously this is very unusual and I would go over it with my doctor and get a second opinion if I could not get my questions answered.

I do not know anything about bird dog syndrum.

icemantoo

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

Brit-hogg-dupe syndrome apparently makes you more likely to have kidney cancer. Like you, I have never heard of it before. I guess the problem with taking the whole kidney is that it is likely to just pop up on the other. We have more to learn about it but first, we need to push for genetic testing.

-Heather

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

I'm glad the lungs were clear, but I'm afraid the Birt-Hogg-Dupe syndrome is steering me to the Google screen. It's totally new to me.

In any case, a second opinion sounds like a reasonable plan at this point, considering the rarity of the disease.

 

Sending hugs and support.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Heather, did they give you a reason why they thought he might have BHD?  That is a very rare genetic disorder.  Does he have the growths all over his face and upper body?  Does he have a family history of kidney cancer?  They did test me for BHD at Emory university, because of various cancers and kidney disease in my immediate family, and it came back negative, thank God!  It's a blood test and takes about  2-4 weeks to run the genetics out on it. Is his tumor Chromophobe?  That is generally the ONLY RCC associated with BHD. I had a right radical nephrectomy with a 6+cm tumor that had grossly invaded the renal vein.  My stage was 3a and my Fuhrman grade was 2.  Hang in there, sweetie.  The military is slow, but thorough, and give some of the best care around, and they will find out if there is a genetic link with his cancer.  You do, however, have to be very proactive.  Ask questions, and do NOT accept "I'm the surgeon, and if I say you're cured, just accept it because I'm a SURGEON!"  If you don't feel comfortable with his treatment, ask for another doctor.  I'd say the same thing if I was talking to my daughter or son.

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

The reason Dr brought it up is because of the plueral lining issue from his last chest scan. Also, beause this appears to be a new mass, fairly far from the original. No history of kidney cancer in family and as far as what type tumor, I wish I knew. The question was asked but it seems ( much to my great frustration ) that they are having difficulties getting the info on my husband from Germany where his surgery took place. I'm starting to feel as if someone dropped the ball here.

It is bothering me that the dr wants to proceed as if he has BHD without first testing. I'm not a doc but doesn't that seem like the right first step? Hubby comes home this evening and I am eager to sit down and really talk. He's not a great phone talker.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Why another partial why not look into RFA OR Cryoablation to preserve the kidney

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

They mentioned those options to him. Several options, really and stressed that he was a good fit for the partial or full due to his (otherwise) good health and youth. Of ourse, we are still going to look into everything before going with one surgeon's first call.

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

You guys have great insight and I appreciate all the replies. I wish you all weren't in this boat and I'm glad to have found you.

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

Advice is out of my comfort zone on this one. Move only as fast as you need to. Then commit. You are opening a new frontier.

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

I have to remember the name of the syndrome by realling Bird Dog. It's an odd name!

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I had to google, as I never heard of that. Definitely get as much information and more opinions if needed. Can they do the genetic testing before making a decision as to full or partial? 

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

Hi Everyone,

I hope you all are doing well. I had a busy weekend so didn't get to post. Mark's Dr. called on his trip back home from his last appt and informed him that the Dr. from whom she asked for a second opinion isn't sure he sees what she does. He said he just wasn't sure there was anything of concern. So... they are working on looking at the scans from right before his last surgery. The waiting is driving me crazy but I know you guys go through this all the time so I'm gonna suck it up and just stay focused on increasing my whole family's health. At least that is within my power.

 

Best Wishes!

-Heather

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