Newly diagnosed

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Steve.Adam
Steve.Adam Member Posts: 463 Member

Hi all... Actually i have not yet been diagnosed... I only have a radiologists's report and a referral to a urologist. I will make an appointment tomorrow (Monday) morning.

10 days ago I had urine like red wine and on Wednesday I had a delayed phase contrast CT scan.

I have a 5cm mass at the bottom my right kidney which is likely to be carcinoma until proven otherwise.

From my reading so far it is quite probably survivable if it hasn't spread. Fingers crossed...

When I saw this forum I decided to join up since I will likely have many questions.

Steve.

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
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    Welcome

    Steve,

    Welcome to the club which no one in their right mind would volunteer to join. I have been a member for over 14 years. There are many posts which you can read regarding newbies with small to medium small tumors. Most of us with 5cm tumors have a full recovery from the surgery alone. Mine was 4.2 cm. The odds are at 5 cm that it has not spread and I would change "quiite probably survivable" to RCC rarely speads with small tumors and even in the unlikely event it spreads that it can be dealt with. Let us know your questions. We have all been there and done that.

    As far as being diagnosed a mass of 5cm is likely Cancer 90% of the time and the lucky 10%ers do not find out till afterwords.

     

    Icemantoo

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited October 2016 #3
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    Thanks

    Hi Ice Man, thanks for your reply and your welcome.

    I don't have any questions yet because I don't know enough to knw what to ask. :)

    Steve.

  • foroughsh
    foroughsh Member Posts: 779 Member
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    You are very wellcomed

    You are very wellcomed

    Most kidney tumors are proved to be malignant but as you said it has a very good survival rate specially once it's smaller than 7 cm and not spread. Although I've seen some with primary can er diagnosis that the pathology report proved it was benign. Nothing is for sure before pathology comes in. You need to take it out and see what it really is. But as it is small I think there's no reason to be over worried. Mine was 10 cm, confined to kidney and I'm NED since the surgery two years ago

    You're re in my thoughts and prayers

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
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    Acronyms...

    Hi Foroughsh,

    What does NED mean? I don't know the aconyms yet.

    'foroughsh' is also a mystery. :)

    Steve.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
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    Acronyms...

    Hi Foroughsh,

    What does NED mean? I don't know the aconyms yet.

    'foroughsh' is also a mystery. :)

    Steve.

    NED

    Steve,

    NED is no evidence of disease, in other words a clear scan. Sometimes Uncle NED delivers his greeting personnaly.

    NBD is no big deal after you have hadd a lot of visits from Uncle NED.

    Icemantoo

  • Allochka
    Allochka Member Posts: 1,063 Member
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    Not only quite probably

    Not only quite probably survivable, but for sure survivable!!!

    Even if it is cancer, you will be fine.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
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    icemantoo said:

    NED

    Steve,

    NED is no evidence of disease, in other words a clear scan. Sometimes Uncle NED delivers his greeting personnaly.

    NBD is no big deal after you have hadd a lot of visits from Uncle NED.

    Icemantoo

    Favourite uncle

    I knew him before and hope to see him again soon.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited October 2016 #9
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    What, me worry?

    I agree based on my very limited knowledge. Worst case is that bad news will be far in the future.

    Meanwhile my health is quite good. I had blood tests the other day and all results were very good including kidney function etc.

    I think my stress hormones are up a bit. I am an odd mix of calmness and nervousness at the moment.

    Anyway, thanks for your reply and it's nice to meet you.

    Steve.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
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    Hey there Steve, sorry for

    Hey there Steve, sorry for what you are going through, but you are probably stage I and will be just fine.

    Doesn't mean it is not an easy  time. We're here for you and will along side you if you like us to.

    Have you ever had any surgery before? And do you know yet if your Urologist/surgeon is familiar with RCC. I would recommend you get a surgeon who does robatic/laproscopic surgery. I have had two and found the recovery much easier. You still have to be careful for a month, except for walking.

    If you have further questions, just ask. Let us know how you are doing.

    Hugs, Jan

  • stub1969
    stub1969 Member Posts: 966 Member
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    Welcome, Steve

    Hi, Steve.  Although I would rather have meet under different circumstances, welcome!  I, too, had a mass around the 5 cm mark.  Mine was 5.3 at the greatest dimention.  You can read about my story by clicking on my "name".  You'll find the people on this site extremely helpful and knowledgeable.  I'd encourage you to stay off Google--I made the mistake of researching RCC when I was first diagnosed.  The stats are not real pretty--they are also extremely outdated.  I'm sure your doctor will give you a better picture.  As you start to develop questions, just throw them out here.  We'll do our best to help.

    Blessings,

    Stub

  • foroughsh
    foroughsh Member Posts: 779 Member
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    Acronyms...

    Hi Foroughsh,

    What does NED mean? I don't know the aconyms yet.

    'foroughsh' is also a mystery. :)

    Steve.

    Our dear icemantoo answered

    Our dear icemantoo answered your question regarding NED. Uncle Ned is our favourite uncle whom we all wish to meet regularly.

    Wishing you all the best

    P.S: Forough is my first name and sh are the first two characters of my family name. I'm Iranian, that's why it seems as a mystery for you. :)

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited October 2016 #13
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    Jan4you said:

    Hey there Steve, sorry for

    Hey there Steve, sorry for what you are going through, but you are probably stage I and will be just fine.

    Doesn't mean it is not an easy  time. We're here for you and will along side you if you like us to.

    Have you ever had any surgery before? And do you know yet if your Urologist/surgeon is familiar with RCC. I would recommend you get a surgeon who does robatic/laproscopic surgery. I have had two and found the recovery much easier. You still have to be careful for a month, except for walking.

    If you have further questions, just ask. Let us know how you are doing.

    Hugs, Jan

    Standing on the edge

    Hi Jan,

    I'm not going though anything yet. I feel like i am at the beginning of a long road and haven't yet taken the first step. Obviously these problems take over our lives for a while. So be it.

    I have not yet seen a urologist. I phoned today to ask when they could see me and was told that my referral would be 'triaged' and if found to be urgent someone might see me in 25 days. I know these things are supposed to be slow growing but it seems a bit more urgent to me than that.

    I will see if I get a better response from a hospital further from home.

    I had an appendectomy in 1974 and agioplasty in 2008 and 2009 (two stents). I am 54 and I walk every day.

    Steve.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
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    stub1969 said:

    Welcome, Steve

    Hi, Steve.  Although I would rather have meet under different circumstances, welcome!  I, too, had a mass around the 5 cm mark.  Mine was 5.3 at the greatest dimention.  You can read about my story by clicking on my "name".  You'll find the people on this site extremely helpful and knowledgeable.  I'd encourage you to stay off Google--I made the mistake of researching RCC when I was first diagnosed.  The stats are not real pretty--they are also extremely outdated.  I'm sure your doctor will give you a better picture.  As you start to develop questions, just throw them out here.  We'll do our best to help.

    Blessings,

    Stub

    Similar masses

    Hi Stub,

    Mine is 4.5 x 4.5 x 5cm and at the bottom of my right kidney so it seems quite similar to yours.

    I don't really have any questions yet.

    What I am most interested in right now is any life style changes I can make that will improve my outcome. At least I can do something about that.

    Steve.

  • stub1969
    stub1969 Member Posts: 966 Member
    edited October 2016 #15
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    Healthy living

    I was actually training for a couple half marathons and was feeling pretty healthy.  I eat healthy and also hit the gym for weight training.  I had really good lung capacity and my resting heart rate was pretty low.  All of this definiately pays off.  In recovery, my blood-oxygen level was excellent right away as was my heart rate.   I was up walking shortly after getting back to my room and was back to work (half days) a week after surgery.  My job doesn't require heavy lifting.  If it did, I wouldn't have been able to go back so soon.  I'm almost two months out from surgery and I've started to run again.  I haven't hit the weights yet just because I feel I need to take that a little slower. 

    Good luck with your pre-op work.  I look forward to hearing how it all goes.

    Stub

     

  • hardo718
    hardo718 Member Posts: 853 Member
    edited October 2016 #16
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    Welcome Steve

    As has been stated, typically these are slow growing.  That being said, I know as soon as I heard I had a mass I felt an urgency about getting rid of it.  As far as I was concerned, "Bob the Blob", as I refer to it, was not welcome at all!  Squeaky wheel gets the grease so keep pushing for what you want/need. 

    My surgeon was a dual specialist - urologic oncologist.  In other words, specializes in kidney cancers.  I also had a robotic laproscopic procedure.  Easier recovery than the open procedure but the ability to have that procedure is determined by many factors, such as location of the mass, your surgeon's ability, etc.

    Best wishes Steve, keep us posted and I will keep you in my prayers in the meantime.

    Donna~

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited October 2016 #17
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    What, me worry?

    I agree based on my very limited knowledge. Worst case is that bad news will be far in the future.

    Meanwhile my health is quite good. I had blood tests the other day and all results were very good including kidney function etc.

    I think my stress hormones are up a bit. I am an odd mix of calmness and nervousness at the moment.

    Anyway, thanks for your reply and it's nice to meet you.

    Steve.

    I always found it useful

    To take someone else with you to meetings with the Doc. I dont know about you, but the after hearing the word Cancer the Dr might as well as been speaking Farsi for the rest of the meeting. Its good to have a second pair of ears to confirm or deny what has been said at the meeting.

    Anyway, I'm sure you'll be fine, your lump sounds a bit of a tiddler. Good luck

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited October 2016 #18
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    I always found it useful

    To take someone else with you to meetings with the Doc. I dont know about you, but the after hearing the word Cancer the Dr might as well as been speaking Farsi for the rest of the meeting. Its good to have a second pair of ears to confirm or deny what has been said at the meeting.

    Anyway, I'm sure you'll be fine, your lump sounds a bit of a tiddler. Good luck

    Funny...

    My urologists's name is Ahmad Ali so perhaps he does speak Farsi. (not sure if my geography is correct)

    I haven't met him yet but he's supposed to be a specialist in cancer and laproscopic surgery.

    Steve.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
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    stub1969 said:

    Healthy living

    I was actually training for a couple half marathons and was feeling pretty healthy.  I eat healthy and also hit the gym for weight training.  I had really good lung capacity and my resting heart rate was pretty low.  All of this definiately pays off.  In recovery, my blood-oxygen level was excellent right away as was my heart rate.   I was up walking shortly after getting back to my room and was back to work (half days) a week after surgery.  My job doesn't require heavy lifting.  If it did, I wouldn't have been able to go back so soon.  I'm almost two months out from surgery and I've started to run again.  I haven't hit the weights yet just because I feel I need to take that a little slower. 

    Good luck with your pre-op work.  I look forward to hearing how it all goes.

    Stub

     

    Exercise

    Hi again Stub,

    It seems like surgery is probably weeks or even months away so that is enough time to lose a useful amount of weight. A 10kg loss made only a small difference on the risk calculator but anything the surgeon doesn't need to cut through must help.

    I walk for 2 or 3 hours every day and my aerobic fitness is probably ok. Walking stimulates haematuria so I might cut back a bit.

    Steve.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
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    hardo718 said:

    Welcome Steve

    As has been stated, typically these are slow growing.  That being said, I know as soon as I heard I had a mass I felt an urgency about getting rid of it.  As far as I was concerned, "Bob the Blob", as I refer to it, was not welcome at all!  Squeaky wheel gets the grease so keep pushing for what you want/need. 

    My surgeon was a dual specialist - urologic oncologist.  In other words, specializes in kidney cancers.  I also had a robotic laproscopic procedure.  Easier recovery than the open procedure but the ability to have that procedure is determined by many factors, such as location of the mass, your surgeon's ability, etc.

    Best wishes Steve, keep us posted and I will keep you in my prayers in the meantime.

    Donna~

    Into the machine

    Hi Hardo,

    It seems like there is a medical treatment machine that sucks you in at one end and spits you out the other and we don't really have much control. 

    I will go wth the flow and try to educate myself so that when I do need to make a decision I will understand things a bit better.

    Steve.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited October 2016 #21
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    Similar masses

    Hi Stub,

    Mine is 4.5 x 4.5 x 5cm and at the bottom of my right kidney so it seems quite similar to yours.

    I don't really have any questions yet.

    What I am most interested in right now is any life style changes I can make that will improve my outcome. At least I can do something about that.

    Steve.

    Everyone's different

    I dont know, what line of work you're in, but you probably need to take your expected recovery time and double it. Dont panic and dont let people around you panic. I well remember 'cancer face' as they tried to take in the information and looked SOOOO serious. Yes, you've got a serious disease, but with the size of your lump, you've probably got a good prognosis.

    Eat lots of greens, or drink green smoothies.

    But really the only advice I can give is take one day at a time. Let what will happen, happen.

    You'll be OK. Good luck.