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just diagnosed

Cindy T in Washington's picture
Cindy T in Wash...
Posts: 27
Joined: Dec 2017

Hi, I am new to this forum.  I was just diagnosed with a "renal mass"  I see the Urologist on the 5th of January.  What words of wisdom do you have for me.  Thank you.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

sorry   You are here.  It’s a terrible shock  

 

#Second of all.. don’t panic

What Info did  they give to you

Size.

Location

Annie

 

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

Cindy,

 

Welcome to the club which no one in their right mind would volunteer to join. Answer the abve questions so we can help you appropriately.

 

Icemantoo

Cindy T in Washington's picture
Cindy T in Wash...
Posts: 27
Joined: Dec 2017

Well, I don't know a whole lot yet. I think I may be one of the lucky one's as the mass was found while doing a scan to check blood flow.  The doctor who ordered the study said yes we need to do something but..... he then explained that they found a renal mass while doing the test.  I do not know the size, but it is in the lower portion of the kidney on the right side.  They have set me up to see a urologist on Jan. 5th.  The Doctor told me it had to come out now ...  So, I have googled the hell out of Kidney Cancer, but as yet do not know the size or stage of the mass.  I found this site while looking and am relieved that I can "talk" with people who have had the same experiences.  I am so glad you are here...

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Welcome!  First of all, try to take a deep breath and collect yourself.  If they did find the mass early, consider yourself lucky.  Reoccurance with stage 1 is small.  I'd encourage you to get some answers before you start searching google.  As much as we all want answers--google is not the place to seek them.  Let us know what you find out from your doctor.  We'll help as much as we can. 

Take care.

Stub

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

They will stage in pathology report post op. You probably get better answers to the million questions popping up in your head now on this forum. There's a lot of recent newbies. Go through some posts. If you can't find an answer post a question,it should be answered. Positive thoughts your way.

 

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I know it's difficult, but you should try very hard NOT to google the hell out of kidney cancer.  The internet is great for a lot of things, but finding consistent medical information is not one of those things.  You can look at ten different websites and find out ten completely different views on just about anything.  Plus, treatment of kidney masses is improving at light speed in the last few years, so many of the websites you'll find are way out of date.  I agree with the folks above.  Ask your questions here.  Pretty much everyone here has gone through what you're going through and there are representives of every type of kidney cancer as well as eveery type of treatment, and the people here are incredibly giving.

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

Hi and welcome (sorry). I am happy for you that you have an appt that quick. Please ask the dr as MANY questions as you want. I would suggest writing them down and bringing the list. I did this and as much as I said I wouldn't forget anything...I still did lol. What a good thing that you found this site. You are NOT alone!!!! I hope you have a great Christmas and please know all of this will be behind you soon and you will be on your way to healing. Try and find comfort in the fact that this is all being taken care of and that they actually found it!!! I know it is difficult, but better than the alternative. Take care and keep reaching out. No question is too silly!

JimHarrison36502
Posts: 30
Joined: Dec 2017

You are definitely not alone. I was diagnosed on Monday ... Surgery scheduled for January 16th. I've been freaking out all week but trying to maintain a positive attitude. Timing seems to be everything with this cancer.. The sooner they find it the better. I will tell you... When you go to have your CT scan... That contrast isn't anything nice! They are also going to fill your kidneys and bladder with liquid...I had to go to the bathroom so bad.. And the tech was wanting to talk Christmas shopping... Lol!! I was like...I gotta go to the bathroom NOW!! She said.. Sit still baby we almost done. That contrast will make everything very hot... Even my breath was super hot. 

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Hi just wanted to say hi , I’m 44 and had a radical nephrectomy for a 9 cm tumour on left kidney ! I’ve found the surgery a lot easier to cope with than the mental anxiety x if u can answer any questions feel free to ask

jo

Cindy T in Washington's picture
Cindy T in Wash...
Posts: 27
Joined: Dec 2017

Just received the radiologists report. What is says:  On the left there is a 4.5 cm diameter this represents a renal celll carinoma.  On the right ther s alow-attenuation, well-circumscribed nodule,  say benign cortical cyst. Can you folks out there recommend the questions I should ask when I see the Urologist?  Thanks again!

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

You will want to know if he/she agrees with the radiologist (esp. about the cyst), how they can get the carcinoma out with the best oncological outcome, what they foresee for your immediate convalescence and what follow up scans, frequency, etc they would recommend.  You really only need one kidney so don't be freaked out if they suggest total removal of the left one - depends where in the kidney the tumour is located.

And you'll get a lot more - this is just a start.

Best wishes.

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I'm surprised the radiologist was so definitive about it being RCC. While the chances are statistically high that it is, my surgeon/oncologist at Sloan kettering said there's always a 5 percent chance that it isn't. And we've had several people on this forum for whom it turned out to be an oncocytoma, which is benign. But there's no way to tell prior to surgery and pathology. So hold out some hope that you're in the lucky 5 percent, and if not, at least it was found early and you can get it out.

My advice is to take someone with you when you consult the urologist. Anxiety makes us miss a lot of what is being said so an extra pair of ears are always a good idea. Ask about types of surgery you could have (partial, laproscopic, robotic, etc.) and make sure you find someone who has extensive experience with partial nephrectomies if that type of suregery is possible with the location of the tumor.

All the best to you!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

of the growth can be a clue that it is RCC.

Be certain of your docs experience with nephrectomies.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

advice very well summarised above

Read them carefully and be fully prepared but I know you are doing that already

Unfortunately the waiting is dreadful as you are left in limbo usually planning  all sorts  and wondering  how on earth has this happened

at 4.5 it needs to go asap

the three cruical things are

a) As Fox says a Surgeon who is experinced in partial and full nephrectomies.

Depending how far into the kidney  the mass is you may be forced to do a full but many people prefer to use a surgeon who will promise that a full will only  be usEd after they have failed at doing the partial

 B) how quick they can schedule the op.. speed is always very important when it is over 4cm

 c)no one will be able to tell you much  or anything until it is removed and they have the full pathology verified by both  a Histologist and your Surgical team.. until  then you will drive yourself crazy imaging every possible scenario.try not to do that.

The bad news it is there.. the good news it is found very early 4.5  in Many cases is very easily removed and a full recovery made and never heard of again

 many reports state that under 4 cm the chance of malignancy is reduced but bear in mind  that over 4 cm 80% of tumours are cancer

 

I wish you well

we are here any time

keep us posted..

 

Annie

 

 

 

 

Cindy T in Washington's picture
Cindy T in Wash...
Posts: 27
Joined: Dec 2017

Thank you all so much for your experience and wisdom.  Many years ago I worked in an industry that used trichorhexaline (spelling?) for cleaning metal.  I have found in 2 different searches about causes of kidney cancer that this compound is carcinogenic and particulary prone to causing kidney cancer.... I am wondering if this could potentially have caused my kidney tumor.....   Also am wondering about the cyst in the other kidney.   The waiting for the appointment just sucks!  I want to get this done...

Thanks everybody.

Rugbyfire44's picture
Rugbyfire44
Posts: 9
Joined: Jan 2014

Hi Cindy, I had a 7.5cm tumor on my left kidney. Doc told me not to worry, because it was located near some blood vessels it was agreed to do a radical nephrectomy. Since my surgery I have had zero issues and all of my follow ups have found everything to be clear. I feel absolutely normal. So there is a good chance you will be fine. Coincidentally, I worked in a urethane plastic factory when I was young. I cleaned metal daily with Methylene Chloride. I suspect that may be a factor. Since I’ve worked as a Firefighter for 40 years it’s kind of hard to pinpoint the cause. Good luck. Keep us posted.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

looking for explanations why. The time wasted is never recoverable. Move on. Look forward to tomorrow with only positive thoughts.

If you live to 100, worrying stops you from being well. If you are to die wednesday, why waste it? You and everyone who cares for you will only remember how miserable you were at the end. It is up to you.

Angiebby75's picture
Angiebby75
Posts: 192
Joined: Aug 2017

You will find lots of good advice here and support here. i just had my surgery in Oct Im learning to take it one day at a time. Find a doctor you trust is most important. Ask many questions I always forget something. Best wishes to you.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Looking for explanations for our cancers may not help us going forward from where we are now, but can be of benefit to others.

I have worked as an industrial chemist all my life in the protective coatings (paint) and related industries, and I know a lot of people who have died from various cancers much too early.  My own kidney tumour was detected by an unrelated ultra-sound, and ever since I have pondered whether or not I should be promoting universal ultra-sound scans for people in my industry.

I can't even begin to analyse which exposures may have caused my own disease as I have worked with reactive gases, solvents, pigments, monomers and resins, isocyanates (urethanes), surfactants and so on, but early detection in a population clearly at risk seems a good idea to me. 

I really would be interested to know if any others out there have a history of exposure to industrial chemicals.

Best of luck with your surgery and recovery.

Cindy T in Washington's picture
Cindy T in Wash...
Posts: 27
Joined: Dec 2017

Well saw the Dr. yesterday.  The tumor is in the lower pole of the kidney and it appears to be within the fascia.  March 12th is the date for the surgery.  He does surgery robotically.  He is unconcerned about the cyst on my right kidney.  Any reccomendations?

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

oh thats a long time

what measurements did they give you

Annie

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

forgive me

you already said

 

my god that is a very long wait

why does it take that long

Brock1969
Posts: 80
Joined: Jan 2018

Hello. In reading this forum, I cannot tell you how comforting you all are (and brave as heck). My short story: 48 year old healthy male, exercise regularly, and had what I thought was a UTI with bladder discomfort for a few weeks, Urine test showed bacteria in urine. New Year's Day went to ER because I was fed up with the discomfort (which, honestly, was a 2 on a 10 scale :). Doc did MRI which he said "looked fine." Had a follow up next day with my general doc who looked and said "did they say anything about your kidney? They flagged it." My heart dropped. Following day follow up contrast scan confirmed very small mass (less than 2cm). Meeting in two days with urologist to schedule the partial nephrectomy with the davinci robot method. 

I was given such reassurance by my primary ("you're gonna be just fine") and then the urologist nurse ("we have been looking at your scans and it's in an ideal spot and it's quite small. You'll be fine."). Of course, never having gone through this, the mind starts to wander. 

Few things about me. I have a bit of health anxiety to begin with, so of course I start thinking "has any of this spread? Is that pain under my rib related even though I just snow plowed the driveway after the storm? Why does this feel this way? THAT feel this way?" I know these are unreasonable thoughts, but I never thought that any of my neuroses would amount to being told I have a mass on my kidney either. 

My fear, if any of you God sent warriors can assure me with, would be the following:

1. This partial neph with the robot seems to be a miracle procedure. True?

2. Doctors seem to think this is so small that it is fairly routine. Need I worry?

3. How do I stop myself from thinking that I suddenly will be assessing my body for every pain and discomfort and thinking I have something somewhere else? Need you to do some cignitive therapy for me to dismiss the absurdity of it all. 

I thank you for all your time, concern, and help. I am big on reassurance. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

1. Let's put it this way. Mine was an open partial and way less painful than I had feared. I was out of hospital on the third day. So robotic lap should be even easier.

2. There's always some worry but yes, it's very small so chances are very good the surgery is the end of it. Guaranteed? Of course not. But odds are on your side.

3. I wish I knew. I'm almost four years out and still think every ache and pain is cancer coming back. With time it will lessen but at first it's natural, I think.

Just get over the surgery, give yourself time to heal, see how you're doing, and if you need a bit of help via therapy, sure, go for it. All the best to you!

Brock1969
Posts: 80
Joined: Jan 2018

Appreciate your words of encouragement 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

You are one lucky  dude

Yes you have it but there is a  Good chance it could be nothing 

1) yes.  ( for most smallish tumours but rcc is unpredictable) Some might suggest  cyroabalation    ( ok if surgery is not tolerable)but get it out so you know it is gone and they can perform full histology on the little bugger

2) no.  Don’t worry.  A slight blip on the road whilst they remove it them move on.  I only wish mine that been that size.  yes it’s horrible you have to deal with it but think of the alternatives 

 

3) sorry but I believe no one will be able to help you with that until you have had it removed and analysed

but I would  agrre the doc and nurse.  You will be fine.  more than fine   You will be great and then checked for the next five years

in the meantime focus on the next step not all the scary stories you are reading

Annie

Brock1969
Posts: 80
Joined: Jan 2018

So many people on here who are incredible. Thanks so much for taking the time to reply. I will do the same post surgery to help assure as many people as I can as well. With all the negatives in the world, this forum is one huge positive. Thank you 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

kind (lucky) guy

Annie

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

Hi Brock.

I was just looking at another page on www.cancer.org with a lifetime cancer risk table.

We all have about a 39% chance of developing invasive cancer during our lifetimes.

After your nephrectomy your probability of recurrance is much lower than that, maybe 2% (I don't know the exact number).

So you have always had a fairly high chance of getting cancer. It is not really much higher now, if any. 

But now you will be more educated about cancer and more closely monitored.  You can take steps to minimise your risks. If you do get cancer again it will likely be spotted very early when it is easier to treat effectively.

I hope you find these thoughts helpful and not depressing. There is so much cancer in the world... But we are among the lucky ones. We have a very high probability of a complete cure. I hope you also come to feel lucky. 

Steve.

Brock1969
Posts: 80
Joined: Jan 2018

I noticed the horse in the background Steve. My daughter is an excellent, competetive equestrian (I call her the "Tom Brady of equestrian" as I am a huge Patriots fan). In two short years she has accumulated an entire bedroom full of blue ribbons. Thanks again for your response and taking time to relay those stats to me. My consult is tomorrow with the urologist and we will make a schedule date for surgery at that time I am sure. I will keep the kind people on this forum updated.

Funny. I went back to my church yesterday and it was like the sermon kind of spoke to me. It was all about the renewal of self in the new year. We as humans are constantly in a state of redefinition and flux. 2018 will certainly be that for me as I take as many positives from this as I can. Be a better father and husband and friend. I think I was all those things before (humbly stated I hope) but can always improve in those areas. There was a reason I found this out on New Year's Day 2018. Time to make the year an incredible one of tranformation, growth, strength and courage. All the best and giddy-up!

 

Brock 

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

There are a lot of horses around here (and cows, wildlife etc.).

I like walking and sometimes stop to make friends with them.  I'm probably not friends with that particular horse anymore. A day or two after that I leaned on the electric fence while stroking his nose. We both got a zap and he was a bit wary after that.

I know nothing about horses but they are very beautiful animals.

All the best in the new year.

Steve.

 

Brock1969
Posts: 80
Joined: Jan 2018

I very much appreciate it 

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

Your questions and fears are perfectly normal...I think so anyway. It is big, life-changing news. Yes, a laparoscopic partial is a great alternative to an open. You will want to keep as much kidney as possible. This is all new to you so of course you will wonder if every ache and pain is cancer! There is a 20% chance it is not and there are those on here who are the lucky ones!!! As you get answers the anxiety will lessen. It is the not knowing that is awful. For me, once I saw the specialist and had a surgery date set, my mind was at rest. I knew it was all going to be taken care of. Your mass is super small so you are very fortunate they found it. Sucks that you are going through this, but trust me....It is better they found it. All the best!!!!

Brock1969
Posts: 80
Joined: Jan 2018

People on this message board are sent from God . Thanks for the affirmations from all 

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