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Newly diagnosed

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

 

icemantoo's picture
icemantoo
Posts: 3283
Joined: Jan 2010

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's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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's picture
foroughsh
Posts: 779
Joined: Oct 2014

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's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Foroughsh,

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

'foroughsh' is also a mystery. :)

Steve.

icemantoo's picture
icemantoo
Posts: 3283
Joined: Jan 2010

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

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

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. :)

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

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

Even if it is cancer, you will be fine.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

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

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

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

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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.

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

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

 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Dont search the web. Again, Good luck

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Steve, what medical coverage do you have that is not having you see a urologist for 28 days? Your mass does sound like it's on the small side, but 28 days is a long time to have to be in limbo.

If circumstances allow, I would probably  (and my wife would definitely) raise a stink or look elsewhere to be seen sooner.

Best luck.

 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

My insurance and geographic constraints resulted in my not seeing whichever specialist physician was next in line for a while. The good news is, these kidney masses don't grow like kudzu. The bad news is, the waiting is a pain. 

In the meantime, do what you know to do to take care of yourself. Don't self-refer to "Dr. Google," anguish over statistics (which most likely are out of date), or try the latest weird miracle diet cure. Oh, and keep us posted. We're here for you and with you. 

Jerzy

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Abunai and Jerzy,

I don't have private health insurance but the public system will cover me. However I have to wait for them to decide on my priority.

I am actually pretty calm about my situation. Nothing bad has happened yet and in my case it probably never will.

I am ignoring everyone's advice about google but don't worry, I am a level headed kind of guy. The internet has a lot of useful information mixed in with the rubbish. I am most interested in cancer survivor's stories, which is why I joined this site.

Steve.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Regarding them figuring out your priority, I always consider it's a good thing NOT to get rushed to the head of the line. That would mean being the Crisis d' Jour, which is doesn't sound like so much fun. I'm sure we all love attention as much as the next person, but there are limits.  In a similar vein, I have faith that -- should someone need to be rushed to the head of the line -- they'll expedite that as necessary. Which is why, when signed up for a procedure and the time goes by... and by... It can be assumed that they're taking care of someone with a critical need. So it's all good. Calm is even better. 

Sorry you've got a reason to be here, but glad you've found us, Steve. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Is a pretty good word for getting to the head of the queue, I would have thought

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Mine was 4.5 cm also and I had an open partial. I know common wisdom is that robotic/laproscopic is easier on you but mine could not have been easier. Well, yes, of course it would have been easier not to have it at all, but I can't say it was anywhere near as bad as I had feared. So even if your surgeon recommends open procedure due to location, etc., it's not as bad as you may think. My scar is under 5 inches and I spent just two days in the hospital. I was up and walking the night of the surgery and sitting at my computer doing work on the fourth day. Hopefully the location allows a partial procedure. Wishing you the very best and hopefully soon this will all be behind you.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Thanks Apny.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Its never as bad as you imagine it will be. Good luck mate

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