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My husband was diagnosed this morning

Maxie0628
Maxie0628 Member Posts: 13

my husband was just diagnosed this morning and I'm a mess. The mass is on his fight kidney and is 9 cm. We now have to wait until Tuesday to speak with a specialist. Super scared. He's 41 and is typically super healthy. I'm not sure what to expect and go through moments of crying and then back to diligently searching for answers/ways of fighting this. I'm so afriad for him and am hoping for some words of encouragement. 

Comments

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    edited December 2016 #2
    Maxie --

    I'm sorry to hear you two got this news. This is a good place to be, if you have to be here.  First off, lay off of the google searching for now.  A bunch of what you'll find is out of date or wasn't accurate to begin with, and practically guaranteed to scare you half out of your wits.  Kidney cancer is not a death sentence by a long shot. 

    First off, the fact that your husband is super healthy is way good.  His recovery times most likely will be shorter.  Typically what'll happen is, you go to a urologist who refers you to a surgeon who's a specialist in kidney cancer. Nowadays, the first thing that happens is they plan for surgery to get the mass out. Depending upon where the mass is situated, they remove it and just a part of the kidney (= a partial nephrectomy) OR they remove the mass and the whole kidney (nephrectomy). The good news is, we get two kidneys to start with, so can still function with less than that.  And -- more good news -- more ofter than not, the surgery is done as laparascopic / robotic surgery, which means 4 little incisions and one slightly larger one. So if you or hubby are concerned how he'll look in his speedos once he recovers -- not to worry. 

    First, they'll do tests (blood work, cardiac, CTs if they haven't been done yet, possibly an MRI). You may feel like jumping up and down screaming (Well, odds are, you probably do, but bear with me here...), "WHAT'S TAKING SO LONG?!" The good news is, you're not dealing with kudzu. Kidney masses are typically very very slow growing. 

    With kidney masses, they typically don't do a biopsy. Instead, after it's surgically removed, it's sent to pathology and that's when they figure out the type, stage, grade, group, etc.  Generally, if there's no evidence that it's located anywhere except in the kidney, there's no chemo or radiation. After surgery (which takes a little while to recover from: yes, it's initially painful, but give it a couple of weeks and aside from the lack of energy it's not too bad, actually), you'll set up a schedule with the physician for scans in the future to keep an eye on what's going on. 

    There are many people on this forum who have had kidney masses / tumors removed that were much larger than your husband's. They're sticking around, living their lives. Some of us had smaller tumors (mine was smaller).  I had my surgery the middle of December. 

    I get what you mean about "fighting this," but my take on it is, I had this sucker on my kidney before I knew about it, and of course was not freaking out. So once I found out about it -- should I start freaking out? I'm not sure how freaking out would profit me in the long run (Which is not to say crying isn't an option from time to time -- just be sure you've got some classy gentle-on-your-nose tissues).  Also, I just let the mass know, hey buddy, you want to pick a fight with me? Too bad. I'm going to chill and be mellow and eat well and until you're removed, you're stuck being surrounded by good vibes and having to deal with my weird sense of humor.  You'll most likely hear from Fox -- He points out that we're LIVING with cancer, not dying from it. Also we may have cancer, it doesn't have us.  Good things to think about. 

    Hang in there -- keep us posted --

    Jerzy

    PS -- You can click on any of our names to get to our profile pages and send a private e-mail, too.  That's always an option. 

  • LMD828
    LMD828 Member Posts: 26
    Welcome

    I am so sorry to hear about your husband.   We are going through something very similar in our home.  My husband had a CT Scan on Friday 12/23 - he was called a half hour later to be told he had kidney cancer (no details, no size) and we were left to worry until Tuesday, when the doctor's office reopened.  I did the same thing you are doing  - crying and looking for answers.  I am very thankful I found this board and felt an immediate connection with these uplifitng and encouraging people.  Please try to find the good in every moment while you wait.  Hopefully the appointment with the specialist will help to answer some of your questions and mitigate some of your fears.   I will be thinking of you and your husband the whole time.  You have found good people here.  Please keep us posted.  

  • hardo718
    hardo718 Member Posts: 853
    Welcome Maxie

    Sorry you find yourself here, but like Jerzy said these masses are typically very slow growers.  You didn't say what symptoms he had, if any that led to the diagnosis.  Do yourself a favor, stay away from internet searches.....the info out there will make you cra-cra! 

    Not trying to minimize your hubby's situation, but many here had bigger beasts and are still here to help you along the way with what to expect.  So although the diagnosis can and will send all of you into a tailspin, it is NOT a death sentence.

    I'll keep you both in my prayers.

    Donna~

  • duster10
    duster10 Member Posts: 29
    edited December 2016 #5
    Hopefully I can offer.....

    something positive.  I am 41, I was diagnosed late Aug of this year with RCC.  I had to wait a full week between the initial discovery of the massand the consultation with the oncologist.  It was an agonizing week.  I double checked all my life insurance, the Wills, the Trusts (I have 2 children ages 9 and 11).  My immediate thought is that this the end.  Fast forward 4 months, I had my right kidney removed due to a 10cm tumor that was RCC.  I have had my first follow up scan 2 weeks ago and I am NED (no cancer).  I play golf once a week, and I am essentially at 99% of where I was before the diagnosis.  I expect to live a long and normal life........with the occasional CT scan thrown in for good measure:)

    I tell you this because there is hope where you think there isnt.  My wife was an absolute ROCK for me when I was going thru all of this, so I would encourage you to try and do the same.  For your own mental health, you need somebody to lean on that you can talk to.  If you dont have anybody in your life who can do that for you, LET US be that person.  If there are any questions, and there will be, dont hesitate to ask!

  • Bay Area Guy
    Bay Area Guy Member Posts: 521 **
    edited December 2016 #6
    Agree on Internet Searches

    I can't agree more with what others have said about internet searches regarding RCC or, for that matter, pretty much any health related search.  As others have noted, many sites are quite out of date in terms of their information on RCC.  Other sites might be shilling some kind of homeopathic remedy, so they downplay the effectiveness of standard medical treatment.  I know it's hard to do.....trust us, we've all been there, as it seems that pretty much eveyone gets a diagnosis like this on a Friday before a long weekend.  The best and only search you should do is to locate the very best urological oncologist in your area and get your insurance company to give you a referral to that person.  I was fortunate enough to get a referral to Stanford Medical Center and had fantastic treatment.

    My lesion was a baby one on my right kidney.....1.4cm when it was first diagnosed and about 1.8cm 2-1/2 years later when it was finally removed.  I will tell you that when I was first diagnosed, my wife and I went through every emotion you and your husband are going through, and then some.  I actually found out before my primary care physician, because I went to the hospital to pick up the report.  The first call I made was to my sister.  She's a nurse practitioner in child neurology, but she's one of the smartest people on the planet in terms of medical knowledge.  She calmed us down by explaining what others have told you.  RCC is very slow growing and these days, so long as it's found early, it's very, VERY treatable through surgery.  Others on this site have had larger lesions than your husband's, and they're still posting.

    Jerzygrrl pretty much laid out the process they'll follow to get this thing out of him.  My experience with the surgery was much different from a lot of others on this site.  Because my lesion was so small, I was able to have a robotic assisted laparoscopic partial nephrectomy.  Iin English, that means my surgeon used robotic techniques to do minimally invasive surgery and remove only a small portion of my kidney.  My procedure started at 3 in the afternoon (which I hated because I had to stew about it all day).  I was released from the hospital the next day at 1:30PM.  I had very little post-op pain, but that might be because of the minimally invasive surgery.  Others with lesions more the size of your husband's can tell you whether they had minimally invasive surgery or not.  The other term that your doctor might use that is extremely frightening to hear is the term radical nephrectomy.  Just hearing or seeing the word radical set me off when my doctor first said it.  A radical nephrectomy simply means the entire kidney is removed during surgery, as opposed to the partial nephrectomy I and some others here have had.  You might be concerned about losing an entire kidney, but everything I've been told, everything I've read, and everything that I've seen from other posters on this site says that the human body can function just fine with one kidney.

    The bottom line is that no one wants to hear the words kidney cancer or renal cell carcinoma.  But, unlike years past, RCC these days is very treatable and your husband's going to be able to bug you for a long, long time to come.

  • mrou50
    mrou50 Member Posts: 389
    Maxie

    Sorry to hear you are here but I am glad you are reaching out for help and support.  There is a good change that your husbands cancer will be taken care of with surgery.  If not there are lots of medications to assist in his living a long and happy life.  As Fox likes to put it "we are not dying from cancer, we are living with cancer." Don't worry about the emotional roller coaster, cry when you need to and scream when you have to.  Make sure you write down all of your questions for your medical team that you want answered, nothing is more frustrating than the unasked, unanswered questions.  Doctors will let you know what they know and will help you research what they don't.  As others have said the internet is a bad source for information in many cases.  If you have quesitions or need support feel free to ask we have all been where you are.

    Mark

  • Footstomper
    Footstomper Member Posts: 1,237
    edited December 2016 #8
    mrou50 said:

    Maxie

    Sorry to hear you are here but I am glad you are reaching out for help and support.  There is a good change that your husbands cancer will be taken care of with surgery.  If not there are lots of medications to assist in his living a long and happy life.  As Fox likes to put it "we are not dying from cancer, we are living with cancer." Don't worry about the emotional roller coaster, cry when you need to and scream when you have to.  Make sure you write down all of your questions for your medical team that you want answered, nothing is more frustrating than the unasked, unanswered questions.  Doctors will let you know what they know and will help you research what they don't.  As others have said the internet is a bad source for information in many cases.  If you have quesitions or need support feel free to ask we have all been where you are.

    Mark

    Welcome Maxie

    Try not to panic. I was diagnosed with a larger tumour (10cm) and mets in my lungs. I'm still here annoying my neighbours with my harmonica stylings 3 1/2 years later. This disease is not a death sentence anymore. New drugs and treatments are coming on line on an almost weekly basis. Your hubby will have a buch of tests over the coming weeks before his tumour and probably kidney are removed. You can survive on one kidney. Good luck to you both. Keep in touch

  • Allochka
    Allochka Member Posts: 974
    edited December 2016 #9
    Maxie, it is definitely a

    Maxie, it is definitely a freightening news, and a very bad timing to get it. But this is NOT the end. You will deal with it togethet, and several months later you'll remembervit as a hard, but also unifying time. Be therevfor you husband, come here for support and info and be sure it will get better and your husband  has all the chances to be allright!

  • Maxie0628
    Maxie0628 Member Posts: 13
    Thank you to everyone who

    Thank you to everyone who responded. I truly appreciate the words of encouragement. I'm still in a bit of shock and trying to process all of this and I can imagine it's a thousand times worse for my husband. I know I need to be strong for him and our family. I'm trying to stay offline (other then this group and news, etc.) and that's helping. Most of all I'm trying not to think worst case scenario, which is tough. I'm the type that always prepares for the worst and he is the eternal optimist. I obviously need to change lol. We see the specialist Tuesday and hopefully get a treatment plan then. Until then the wait is excruciating. I'm sticking close to him and comforting him as much as I can. Again, thank you all for your comforting words and I'll update you all on Tuesday. 

  • Jan4you
    Jan4you Member Posts: 1,327
    edited December 2016 #11
    Well Maxie, glad you found us

    Well Maxie, glad you found us! We can surely understand your anxiety. But try, really hard, not to waste your energy on the "what ifs" when you may learn just the opposite of your fears. We give the c-word just too much power. Renal cancer often leaves with the surgery for most of us. Then he'll be monitored just to make sure.

    Hopefully he's reading our posts too so he can know he's not alone, WE understand and will be there for him and for you, ALL the way!

    Has he ever had any surgery before? We can answer any questions about this surgery too. Make sure his surgeon who may also be the Urologist, knows laproscopic/robatic surgery.It is much less invasive and easier recovery.

    Hugs to you both~ Jan

    Hugs, Jan

  • Maxie0628
    Maxie0628 Member Posts: 13
    edited January 2017 #12
    I'm still a mess...

    and I know I'm not helping the situation. I've been reading your stories and I've felt a lot better, but this wait until Tuesday is agonizing. My husband originally went to the dr because he thought he had a uti. He had blood on his urine which of course scareD us both. He receievd antibiotics and he got better. After the meds ended a few days later it came back which lead us to more antibiotics and a CT scan which lead to the diagnosis. So now we wait, and wait. I'm trying to stay positive as is he but last night he had blood in his urine again. I'm back to being on edge. I can't sleep. His urologist stated that it's 9cm and just needs to be removed, and I'm trying to keep that thought in mind, but the searches I've done state that this is advanced and that word scares me. I know I need to calm down and be strong for him, but I just want to roll up in a ball and cry. Any advice? 

  • APny
    APny Member Posts: 1,995
    I'm so sorry you and your

    I'm so sorry you and your husband are going through this. It's truly a nerve wrecking experience. The blood in the urine is typically when the tumor is close to the collecting duct. Or at least that's what my surgeon/oncologist told me. In a way, it's a good thing because it made our doctors order CT scans which found it. If I didn't bleed, I would never have gone to a doctor. Treatment is typically surgery and if it has not spread anywhere that's the end of it. Being young and healthy otherwise is very good and will aid in his recovery. My surgery was an open one and I recovered just as quickly as those whose was robotic and/or laproscopic. Only 2 days in hospital. So if it has to be an open surgery it doesn't mean a difficult recovery. Wishing you all the best and once the surgery is over with you'll find relief from all the terrible anxiety. For me, the anticipation was way worse than the surgery.

  • marosa
    marosa Member Posts: 333
    I have little to add

    to what others here have told you.  Would just repeat more or less the same so just wanted to say I'm here for you too and I very much understand how you feel. Try to be strong.  My main strenght thru those fearsome diagnostic and pre-surgery and first months after came from the positiveness of my husband.

  • Wsavio
    Wsavio Member Posts: 3
    edited January 2017 #15
    Your not alone

    Sorry to get the news but the good news that's it not a death sentence there many options you should concider 

    Get a second option so you can decide on an attack

    don't read too much on internet

    -lease read my experience MG

  • Wsavio
    Wsavio Member Posts: 3
    Your not alone

     

    Monday, January 02 2017Last onlineMonday, January 02 2017Age Range60-69About 6 years i was told i had cancer on my right kidneyMy Urologist of 25 years told me i have a mass on my right kidney and suggested to remove the kidney at first i was scared and agreed 
    I went home to examine my options and decided to go to Sloan Kettering in new your where i met a Surgeon that wanted to preform a partial nephron that was 5 years ago (no after treatment needed) keeping up with follow up examinations last year found out my left kidney develop a mass and last Dec 5 2016 had to remove the kidney Thank God I didn't go with the first option
    By the way my right kidney has 85% function I need to keep it healthyLesson learnedAlways get a second opinion and do your own research