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Feeling Scared

scotcan
Posts: 6
Joined: Apr 2014

Hi All,

 

This is my first post but I've a feeling it won't be my last one, as I think I may be about to be informed I have Kidney cancer.

 

A brief synopsis of what has happened. About 2 years ago, during a yearly medical checkup, I was called in to my doctors because I had blood in my urine. It was microsopic, so I couldn't see it, and I got an abdominal ultrasound and was sent to a urologist. He said everything was fine and a follow up urine sample was clear for blood. I wasn't told at the time but I had 4 cysts on my left kidney and one on my right, but they were classed as simple.

 

The following year my urine was clear, but at the end of last year (2 years after the initial urine test) I had miscroscopic blood in my urine again. I had another abdominal ultrasound and this time it came back saying I had complex cysts. When they called to tell me they told me over the phone and said I'd have to get a follow up ultrasound in 6 months time. I read the radioligists report and he said the cysts were showing signs of being coplex and had internal echoes, and recommended follow up, but it was probably nothing to worry about. The cysts were larger than the previous ultrasound, 2 years prior, with the largest being 4cm.

 

I had the follow up ultrasound a couple of weeks ago, and the technician stopped halfway through and left the room. I heard her talking to a colleague about a mass, and they both came back in to look, where she tried to reassure me "it wasn't me it was the machine they were looking at". I was called last week, by my doctor's office, to make an appointment as he needed to see me. I asked if was anything serious and the receptionist said she'd look at the file, then she told me she didn't understand it and I better come see my doctor. Because of Easter I haven't been able to get an appointment till Thursday this week, but I'm terrified and preparing for the worst.

 

Doing internet searches and looking into symptoms I'm feeling like I have a few. I don't know if it's anxiety or real but I'm getting some pains in my sides, both left and right, ranging fro the top of my hip to my ribcage. I'm also feeling tired and fatigued, but that could be cause I've an 8 month old and a 2 1/2 year old. I'm just in knots right now thinking about this and feel I can't really talk to my wife about it much, as she just says it's probably nothing. Any advice and feebback would be greatly appriciated.

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Scotcan,

 

Cysts are common and usually nothing to worry about. However at 4 cm they could be cancer or could become cancer. Usually a CT scan is more definitive than an MRI or Ultra Sound.

It may not sound like good news, but if it is 4 cm and is Cancer it is still small enough that it will be likely cured by surgey alone. As for your other symtems they could be Kidney Cancer or 100 other things, but need to be followed up with your other symtoms.

All of us on this board have had Kidney Cancer. The surgery is not fun, but it often gets rid of it. Mine was 12 years ago. Faye across the street is at 20 years.

It is ok to be scared. We all were hearing that we have or may have Kidney Cancer and the first treatment is major surgery.

There are many on this board who would do anything for a mass as small as yours. You will be OK and be able to see your chidren grow up

Fill us in on your diagnosis after you meet with the doctor. Hopefully he is a Urologist who specilizes in Kidney Cancer.

We will help you thru this having been there and done that.

 

 

Icemantoo

 

scotcan
Posts: 6
Joined: Apr 2014

I went to my family doctor yesterday and he told me the radiologists report said my cyst had grown to 4.7cm (From 4cm, 5 months ago). He also said they recommended I do a follow up CT or MRI. I asked to be referred to a urologist who specializes in Kidney conditions and he has sourced one local to me, but he said he can't refer me to a uro-oncologist as I don't have a diagnosis of cancer. I went for some blood work, to check my creatinine, so they will know whether I can have contrast in my CT scan or not, depending on the results of this and how soon I get my appointment with the urologist then he might book the CT himself - So the urologist has the results for my first visit.

I was a bit concerned that the cyst had grown so much in such a short space of time and I guess that's why they want follow up tests with CT or MRI. It's just a waiting game right now and that's the thing I'm finding hard right now. Best case scenario is that I have to go for scans every 6 months or so to make sure nothing is there, but I'd rather have the cysts removed and not have to worry about that, unfortunately the doctor said they wouldn't perform surgery unless there was something serious and confirmed there.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Welcome to the forum...  No way to tell what is going on at this point.. but suggest you get a CT with contrast (if possible) to be more conclusive.  U.S. does not always define what they are looking at.  And I am surprized the Urologist did not do that eons ago..!  Not sure where you are at.. but perhaps you need to press the issue, and if you get any resistance change doctors..  Sometimes it happens that folks are not with the right doctor.  So, press for answers, if you get any hesitation, move on..  The good news is that what ever it is, it is still fairly small.  But waiting  does not seem like it will help at this point..  I am no doctor.. but..

Good Luck..

Ron

angec's picture
angec
Posts: 626
Joined: Mar 2012

Hi Scotcan, sorry to see the run around you are gettting. First, I would like to suggest that you get a copy of ALL of your past blood reports and scan reports. All of them. From here on in, you get copies of every report from every test you take.  You can also have it put on cd rom and bring it with you wherever you go for the docs to view it.  Here we go again with cysts being shown on a scan and no mention of it coming from the doctor. I am beginning to think there has to be some action taken as a whole with these doctors. It is too common now!  

I would check with both the Urologist and the medical doctor to see why you weren't advised two years ago that you had cysts.  Was your report forwarded to your gp at the time? If so, why didn't he tell you about the cysts? Cysts should always be monitored, it doesn't matter if they are simple, complex or unknown. They need to be followed routinely until and unless, there are not growing and they are stable, then the scans/US become less frequent.

Most of the time they cannot tell what the cyst actually is until surgery is done. Unless it is fairly evident that they are liquid cysts which they can see. I would push for a ct scan with contrast of the abdomen, pelvis and chest (done at the same time) and just have that done for peace of mind.  It can be nothing, it is true but but you need to confirm that.

Don't go reading things online that will only serve to scare you.  There are hundreds of symptoms that can be even from a common cold! Are you having night sweats, fevers, high blood pressure? Have you lost any weight? Those are fairly common for RCC.  But then again, if you were a woman and going through menopause, the nightsweats would be there also. See what I mean?  So, the fatigue is most probably from the two babies keeping you busy!  My son is ten and I have not had one good night's sleep since he is born.  All of this can be nothing but this all has to be checked into.  Make sure the doctor you are seeing is a good doctor and has lots of experience with RCC. If not, seek advice on the boards here for someone in your area. They can suggest someone who is very good.  

So, you should be insisting on the Cat Scan...that will be the next step. Let us know what he says on Thursday. Will be praying for you and try not to worry. I get the feeling they are not too concerned about it all and it might be nothing..  XX

You can also post your question on www.smartpatients.com... many experienced folks there that can also give you great advice!  Be well! Hug those babies for me! :)

 

 

scotcan
Posts: 6
Joined: Apr 2014

Thanks to everyone for responding so quickly.

Basically all of this has been done through my family doctor. He referred me to a urologist a couple of years ago when I first had blood in my urine and I had a another urine test and a kidney ultrasound which I was told came back normal. Now I have blood in my urine again and got another ultrasound which came back showing signs of "slightly complex cysts". It was then I found out that the cysts showed on my initial ultrasound but were deemed simple and irrelevant. I'm told they have grown and also show signs of internal septae.

I live just outside the GTA in Ontario Canada, and my family doctor told me they don't use the bosniac scale here to rate complex cysts, so I'm guessing I was IIF because he scheduled a follow up ultrasound, which was just over a week ago now.

I don't have night sweats, fever or high blood pressure and I haven't lost any weight. I'm a 40 y/o male and, apart from being out of shape as I don't exercise much now (Because of 2 young kids), thought I was in reasonably good health. I had skin cancer about 10 years ago and have a few things investigated since that turned out to be nothing, but this is scaring me!

I'll see what the doctor says on Thursday and will request he sends me to a urologist or specialist.

Thanks for listening!

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Scot,

I'm sorry for what you are going thru.  I know how scared you are and, rightfully so.  Kidney cancer is serious business and should not be left to chance.  I'm glad you found this site tho, it has proven to be my best source of information.  Personally, I really only offer words of support, not so much wisdom.  I'm not nearly as well versed in RCC as many others on this forum.

I can understand why a ct was not done following a diagnosis of simple cysts, two years ago.  Maybe that's a wait and see situation.  But for the life of me, I don't get why a ct was not done immediately following the diagnosis of complex cysts.  I'd be willing to bet if the radiologist who indicated your cysts were probably nothing to worry about, were looking at an identical report of say, her child, her spouse or her parent, she'd damn sure think it worthy of immediate follow-up with contrast ct.  Why leave it to chance?  CT's are widely available, quick and simple to do and SAVE LIVES!!!  My guess is, a ct is in your near future after seeing your doctor later this week...at least I hope it is. 

As for the symptoms you are describing, I'd be inclined to think they are anxiety induced.  I only say that because I didn't exhibit any symptoms until I started my research following my diagnosis.  Before long, I had every symptom I read about...but only in my head.  Please don't think I am telling you this is all in your head, I'm just sharing my personal experience with the anxiety of thinking I had kidney cancer...suddenly, everything hurt and I had little twinges here and there that were surely related.  From everything I've read, that makes us normal Wink.  Having said that, naturally, you will discuss your symptoms with your doctor.

As for your wife, my guess is, she's having her own anxiety.  I would not take her nonchalant attitude as her not being concerned.   I'm sure it's her way of keeping you from freaking out even more.  Think about how much more scared you would be if she were openly freaking out.  Us wives know when to tame our crazy in order to maintain normalcy, during times like this.  Apparently husbands do too; I saw no sign of panic in my husband of 32 yrs, when I told him my ct indicated cancer, nor did he show any emotion as he sat with me in the urologists office as the doctor said that dreaded word.  Later, our daughter told me her dad cried like a baby...said it broke her heart.  Our kids have seen their dad cry once or twice in their 29 yrs but they both agreed they've never seen him scared...of anything, till this.  Looking back, I know without a doubt, if he had freaked out I would have gone over the emotional edge I was teetering on.  He, no doubt, knew that.  I suspect the same is true for your wife.

As for little ones, they do have a way of zapping our energy right out of us, especially two year olds.  Hopefully, the fatigue you are feeling stems from keeping up with them.  What a blessing they are tho, right?  They'll be grown before you know it.  Chances are, if you do in fact have kidney cancer, you'll likely have surgery to remove all or part of the affected kidney.  Following your recovery period, you'll be back to chasing your little ones around and watching them grow to adulthood.

My best advice is to get all of your medical records.  You don't necessarily need the images of the ultrasound but definitely get the report.  And read it, word for word.  I would get the the report from two years back and all subsequent reports.  If you have a ct, do the same.  Any lab work?  If so, get those too.  The records belong to you and are yours for the asking.  I'd venture to guess, you'll learn more from your records than you will from your doctor.  At least, that's been my experience.  I normally have my reports faxed to me so that I've had a chance to review them before I see the doctor.  In the event I don't have my records prior to appointment day, I ask for a copy when I check in for my appointment.  It only takes the receptionist a moment to copy it and hand it to me and I have (more than enough) time to look it over while waiting on nurse to call me back.  I find it helps me know what questions to ask.  I didn't do this in the beginning because I didn't know to.  It's just one of the many things the kind people on this forum have taught me and I think it's been the single most valuable piece of advice I 've received.  So, I pay it forward, hoping it helps someone else as much as it did me.

I hope you'll come back and update us once you've seen the doctor.  If the doctor suggests you continue to wait and watch, ask him if that is what he'd recommend if you were his son.  If he says yes, seek a second opinion. 

Try to stay postitive and stop preparing for the worst.  The worst isn't nearly as bad as you've imagined it to be.

Hope to hear from you later this week.

Sindy 

 

 

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

 

 

Scotcan

, We are practically neighbors.While we live in a suburb of Detroit I go through your area often on the way to Algonqin Park.

 

First your small cysts in the past at 1 cm  were in the wait watch anf follow up as necessary mode.

 

Second at 4cm while a GP and Urologist are good at primary diagnosis you need a Urologist who specializes in Kidney Cancer. I am srure their are plenty in the GTA.

 

Also give a call to the Canadian Kidney Cancer office a small 1 person operation) and see if you are seeing the proper doctor and what you need for a referral/  I understand that their are required protocalls under your heath care system.  Icemantoo

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Hi Scotcan,

Regardless of what your GP says, I strongly recommend you see a Urologist, preferably one very familar with kidney cancer.  I don't know if your insurance requires a referral in order to see a specialist.  Even if your GP says you don't need one or that your cysts are nothing to worry about, I would see one.  Even if it turns out not to be cancer, it could be kidney disease.  There are some types of kidney disease that cause multiple cysts on/in the kidney and blood in the urine can also be a sign of that.  Check the creatinine level on your blood work.  That is an indicator of kidney function.  My GP assured me for 2 years that my elevated creatinine was nothing, when the GP on the 3rd one sent me to a netphrologist who found my kidney disease.

My next recommendation is that you don't rely 100% on an ultrasound.  The radiologist that read my ultrasound missed my tumor while a CT scan, 2 months later showed a 9cm tumor.

I'm not trying to be an alarmist.  It is just that, after  my experience, I hate to see you put all of your faith in a GP and/or ultrasound.   Even if you don't have kidney cancer, you need to rule out kidney disease.

Kathy

scotcan
Posts: 6
Joined: Apr 2014

Hi Kathy,

Thanks for getting back with your story and advice, I'm amazed a radiologist missed a 9cm tumour, that is just so scary. After reading up on things and taking advice on here I'm trying to get in earlier to see my doctor and will ask to be referred to a specialist and get the required tests done.

The reason he did a follow up ultrasound was because he said he didn't want to expose me to unneccessary radiation with a CT scan, which sounded reasonable to me. I now realise, through some research, that a CT scan is the gold standard for evaluating kidney cysts/masses.

Mark

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Mark,

 

No sense looking back. You need a CT to evaluate the tumor and a Kidney Cancer specialist to take it out. If you do not get immeadiate referrals follow my earlier suggestion.

 

We have plenty of members doing well after 9 cm tumors although their may be bumps n the road.

 

 

 

Icemantoo

 

 

Jojo61's picture
Jojo61
Posts: 407
Joined: Oct 2013

Hi Mark,

Welcome to the forum. Sorry you are getting the runaround. I live in Cambridge, Ontario. I went to a urologist iin Kitchener, and he referred me to a superstar kidney specialist at McMaster in Hamilton (at St. Joseph's hospital). Dr. Anil Kapoor is his name. You can even see him do some presentations on youtube. It gave me confidence in him. It might be worth trying to get in to see him. I am sure it isn't too far from where you are living. He is a uro-oncologist, but I believe he also specializes in all kinds of kidney stuff. If you want to talk more or get more information, you can pm me. It can take a while to get in to see him, but the care is excellent.

Good luck and keep us posted!

Hugs and smiles

Jojo

 

rainsandpours's picture
rainsandpours
Posts: 103
Joined: Apr 2013

Ask for a CT.  Ultrasounds can be useless.  Mine was never spotted on US even after we knew it was there.  I had had a full abdomen US just 2 months priort to my CT which only showed gallstones, and kidneys were "unremarkable".  Then a week after the CT, a renal US was clear.  The position of a mass has a lot to do with it.

 

Try not to panic too much.  Easier said than done, but all the steps to testing take a while, and you can put yourself into extreme stress easily.

scotcan
Posts: 6
Joined: Apr 2014

I went to my family doctor yesterday and he told me the radiologists report said my cyst had grown to 4.7cm (From 4cm, 5 months ago). He also said they recommended I do a follow up CT or MRI. I asked to be referred to a urologist who specializes in Kidney conditions and he has sourced one local to me, but he said he can't refer me to a uro-oncologist as I don't have a diagnosis of cancer. I went for some blood work, to check my creatinine, so they will know whether I can have contrast in my CT scan or not, depending on the results of this and how soon I get my appointment with the urologist then he might book the CT himself - So the urologist has the results for my first visit.

I was a bit concerned that the cyst had grown so much in such a short space of time and I guess that's why they want follow up tests with CT or MRI. It's just a waiting game right now and that's the thing I'm finding hard right now. Best case scenario is that I have to go for scans every 6 months or so to make sure nothing is there, but I'd rather have the cysts removed and not have to worry about that, unfortunately the doctor said they wouldn't perform surgery unless there was something serious and confirmed there.

Sorry to post this twice, new to the forum and originally posted it in the wrong place!

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Scot,

 

The 4.7 cm sounds a lot better than the 9 cm you posted earlier. You need to get the Ct and the surgery behind you. Even at 4.7 cm watch and wait is not in the cards. At least thats my non-medical opinion. as for the uro oncologist that can wait for your pathology post surgery.

 

 

Icemantoo

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