Awaiting kidney cancer diagnosis

mvalkosky97
mvalkosky97 Member Posts: 14
edited July 2017 in Kidney Cancer #1

I have created this page for information for myself and my fiancé. He is our patient here. We are 26 years old and just can't catch a break. Recently he had a collapsed lung and was diagnosed with bleb disease and underwent surgery to resect the blebs in his left lung. Just so happened to catch a solid mass on his right kidney measuring a little under 7cm. Fast forward we are awaiting biopsy results that have now been sent to multiple labs. Definitely preparing for a CA diagnosis now, they would have told us it was benign I assume. We are seeing Dr. Merrick in wheeling, wv. He seems to think RCC is not likely because of his age. He has NO symptoms. Anyone here seen a young RCC diagnosis? What else could we be looking at here? Looking for some friends for our journey. 

 

Edit.. I forgot to mention they had a hard time with biopsy because they said his mass is necrotic. That scares me. I work in the medical field so I feel my sense of everything is much more terrified of terms.

Comments

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    #2
    mvalkosky97

    First let me tell you I relate one million percent to your dread and overwhelming sense of being scared out of your mind. My hubby had kidney cancer in 2008 at the age of 54-and he had to have his left kidney removed. In terms of symptoms tiredness was very noticeable for at least several months prior to the diagnosis-in addition to a pain in his back area (the emergency initially thought it was appendicitis). His color was very white and pasty. I didnt realize that until he had his cancerous kidney removed-and  color immediately came back to his face. 
      The reason I am saying this is twofold-most people I know who have kidney cancer have some symptoms. Of course there are some who do not as well. Howeever due to his very young age it is highoy unlikely that its kidney cancer in my humble opinion (I am not a medical professional) but have alot of knowledge about this disease.Unless it is a genetic form of kidney cancer where others in his family have had it, it is very unlikely kidney cancer.

      It is easy for people who have not been through the dread of worrying about a cancer diagnosis to tell you "dont worry about it". I recommend doing whatever makes you feel better until you find out the correct diagnosis. Going to a movie, a glass of wine, hitting a pillow-just do whatever feels right to get the fear out of you. 

    I wish you both the very best of luck with this!

    Sincerely-Bella in Ohio

     

     

  • DreamOnDeb
    DreamOnDeb Member Posts: 112
    #3
    Hi.....we are also waiting

    Hi.....we are also waiting for results of my husband's kidney biopsy (which was done on Monday).  He is 64 years old, his tumor is 3 cm, and it is located in the upper pole of his right kidney.  There is a 20% chance that these tumors could be benign (such as an oncocytoma).  it is extremely difficult to distinguish a benign oncocytoma from Renal Cell Carcinoma by looking at a CT scan.  The only way to definitively diagnose it is by having a biopsy, or removing the tumor by having a partial or radical nephrectomy and then sending it to pathology.  There are also a couple of other benign lesions that it could be.  If it was just a simple cyst, they would most likely be able to tell you that by an ultrasound or a CT scan.  So, there is still a chance that it could be benign.  If it turns out that it is cancerous, and it is contained to the kidney, it can be taken care of, usually with no further treatment after it is removed.

    My husband also had a collapsed lung two years ago.  I recently joined this group in May and there are so many wonderful people here that will help you both get through this.  It is not a death sentence.  Keep the faith.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    Young RCC diagnosix

    mv97,

     

    Over the year there have been a few RCC diagnosies on this and other boards in your age range although uncommon. Doctors not seeing a large amount of Kidney Cancers are going to be surprised to see one so young. Hopefully everything will work out.

     

     

    Icemantoo

      

  • Lovtad
    Lovtad Member Posts: 4 Member
    #5
    Hello!

    Your story is very similar to mine. I am 49 years old an I had collapsed lung 5 times when I was 30 years old. I had 2 cancer tumors on my left kidney, 2,3 and 3 cm removed by partial nephrectomy last July. Our family was diagnosed with very rare hereditary disease Birt-Hogg-Dube syndrome. Blebs and collapsed lung, kidney cancer in younger age (before 50) and white spots, benign skin tumor called fibrofoliculomas in face and upper trunk, which are only cosmetic problem are typical symptoms for BHD syndrome.

    Kidney tumor histology is not typical. For BHD syndrome  hybrid oncocityc tumor (in 50%) is typical which is very rare and it is difficult for pathologists to recognise it. I think this is a reason that your tumor samples were sent in different labs. Tumor is indolent and does not spread. You may have other types of tumor histology as chromophobe and clear cell. The prognosis is excellent if your kidneys are managed properly. Ask your doctor for genetic testing.

    You can get more information and support on website: https://www.bhdsyndrome.org/

    P.S Sorry for my English.

    Regards from Slovenia,

    Tadeja

  • mvalkosky97
    mvalkosky97 Member Posts: 14
    #6
    Wow thank you all so much!

    Wow thank you all so much! That's 2 people with collapsed lungs also?? Nuts I never would have dreamed that there was or could be a connection there.

  • mvalkosky97
    mvalkosky97 Member Posts: 14
    #7
    Lovetad did your family have

    Lovetad did your family have issues too? He doesn't know much of his family so if there was something genetic going on it would be difficult for us to recognize.

  • Lovtad
    Lovtad Member Posts: 4 Member
    #8
    Yes, my family have issues

    Yes, my family have issues too. I got the syndrome from my mom. 4 uncles and aunts ,my brother, one cousin and my niece have it. I have two daughters 26 and 27 years old and they don't want to be tested. They have 50% chance that they got it from me. They have not had any issues yet. All affected family members had collapsed lung. Some of them have skin fibrofoliculomas and kidney cysts. So far only my uncle and I had kidney cancer. 

     

     

  • Lovtad
    Lovtad Member Posts: 4 Member
    #9
    A lot of people have

    A lot of people have collapsed lung and a lot of people have kidney cancer, but it is difficult to understand that there is a connection between collapsed lung and kidney cancer. The number of people with BHD syndrome is higher but they haven't been diagnosed. Pneumothorax BHD awareness campaign was organized this year to raise awareness among medical staff that collapsed lung can be symptome of BHD syndrome.

    Our family is the only family in Slovenia diagnosed with BHD syndrome. My doctors ( GP, urologist, thoracic surgeon,..) have never heard of it. Fortunately I am a nurse and I read a lot of literature. This help me and my family to go through this rare desease.

     

  • ImNotDeadYet
    ImNotDeadYet Member Posts: 244
    #10
    It knows no age boundaries

    While mine didn't appear until my early 50s, I have a friend who was diagnosed in her early 30s. I believe hers was small and they caught it early enough, so it only required a partial nephrectomy. But it does happen at all ages, unfortunately. 

     

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited July 2017 #11
    Mval --

    I haven't been diagnosed with any sort of syndrome and I wasn't particularly young when I was diagnosed with my kidney mass (OK, I like to think I'm still young-ish, but in terms of kidney cancer... no). However, I didn't have any kidney tumor symptoms, just kidney stones and a wee bit of blood in my urine. It's not uncommon in the giant scheme of RCC that patients' kidney tumors are spotted when they're looking for something else. 

    Sorry that you've got a need to be here, but glad you found us. Keep us posted -- 

    Jerzy

  • mvalkosky97
    mvalkosky97 Member Posts: 14
    #12
    It's officially been 2 weeks

    It's officially been 2 weeks since biopsy.... what the heck. Will be calling in the morning.

  • mvalkosky97
    mvalkosky97 Member Posts: 14
    #13
    Finally after almost 3 weeks

    Finally after almost 3 weeks we got our call. Doc said to celebrate he doesn't believe it's cancer. Although he did say he and the Mayo are both scratching their heads. He threw out the word oncocytoma. GREAT that isn't cancer!!! BUT his tumor was necrotic during biopsy and in my research found the necrosis usually doesn't happen to oncocytomas and it could still be cancer with oncocytes. Sooooo we've been referred to a wonderful doc at UPMC whom I worked for for years. It has to come out one way or the other. I assume they will just send the entire tumor for pathology following that. I am scared. Scared to get too excited because I cant stay off the internet. He seemed uncertain of what it was but didn't seem to think it was cancer. Fingers crossed, lots of prayers, we have had a VERY rough year. 

  • KatRose
    KatRose Member Posts: 1
    #14
    Lovtad said:

    A lot of people have

    A lot of people have collapsed lung and a lot of people have kidney cancer, but it is difficult to understand that there is a connection between collapsed lung and kidney cancer. The number of people with BHD syndrome is higher but they haven't been diagnosed. Pneumothorax BHD awareness campaign was organized this year to raise awareness among medical staff that collapsed lung can be symptome of BHD syndrome.

    Our family is the only family in Slovenia diagnosed with BHD syndrome. My doctors ( GP, urologist, thoracic surgeon,..) have never heard of it. Fortunately I am a nurse and I read a lot of literature. This help me and my family to go through this rare desease.

     

    Another BHD patient

    I was also recently diagnosed with BHD. Got a CT scan soon after and found a 2cm mass in my left kidney. Surgery happened last week to remove it, along with a golf ball size of surrounding tissue, and it was confirmed to be chromophobe renal cancer.

    My brother was the first to be diagnosed with BHD after a severe lung collapse, and now everyone on my dad's side is being tested. I had never even heard of Birt Hogg Dube less than 2 years ago. And now I've just had cancer removed from my kidney I would have not known about, if not for the BHD diagnosis and subsequent scan.

    It's great to hear there is growing awareness of this syndrome, especially after lung collapses. Thanks for sharing your story.

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