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I think I have kidney cancer and I'm desperate

fab66
Posts: 10
Joined: May 2013

Hello,

My name is Fabrizio.

I had an ultrasound last week and they found insidentally a 2cm mass they thought it was an angiomiolipoma and ordered a CT scan to confirm it. Instead the CT scan revealed a solid mass of 2.4 cm and they ssid they cannot explain its "origins"... I'm not sure what this means, from what I read sounds like solid masses are cancer most of the time.

I went throu lots of emotional pain for the long struggle and death of my spouse from brain cancer (4 years of long struggle). I restarted my life 2 years ago and now have a wonderful woman, and 2 kids, the youngest one is 2 months old.

Just when I thougth I had a new life and was starting to be happy again, this new thing came. I feel desperate and I know for sure that the cancer came from those years of suffering and loss...

Not sure what my questions is besides trying to understand what the report means "solid mass that cannot explain its origins". They just told me this over the phone Friday afternoon. My only symptoms are nausea, headaches and pour digestion (about twice a week). The interesting thing is that I was much worst last year, then I got better for 6 months and now has started again, I fond it odd that cancer was worst, then better??!!

I need some support, I'm inside my head a lot and not connecting with my kids and partner... I just cried a bit and felt better.

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

Hi Fabrizio.  You've found the right place to vent.  I think you're my karmic doppelganger.  My kidney tumor was found on Ct incidentally also.  And it's roughly the same size as yours ( a bit smaller).  I think the problem with small masses is it's less clear to the doctors whether it's cancer or something less sinister.  I'm having a biopsy on mine tomorrow morning to know for sure.  It's not normally done, but my Uro suggested it to help rule out mets (cancer spread) from my other cancer.  I've been dealing with the rollercoaster ride of testing, waiting, poking and prodding for 19 months now, so I've run the gamut of emotions.

 

Perfectly understandable the fear and stress you're under.  As a mom myself, my first thought was my son.  What happens to him? How will I care for him when I'm ill?  All that jazz.  Know this though, RCC has a favorable prognosis.  Your tumor is small, and as everyone here at CSN tells me, that is the best news.  You will be around for your babies and your new wife.  All I can suggest is to give in to the fear, face it head on, have a good cry, then soldier on.  We (as parents) have no other option. 

 

Funny you should mention stomach issues and headaches.  I've been having that on and off (including random vomiting) for about a year.  Strange gurgling, weird hunger that isn't stopped by eating, etc.  I take Nexium now every night, and it seems to help with that discomfort.  Maybe ask you GP for a sample?  Imitrex works for the headaches.  You need to avoid NSAIDS with kidney issues (Advil, Motrin etc), and we all know Tylenol isn't very effective.

 

Please feel free to message me if you need someone to talk to.  I'd be happy to help any way I can.

fab66
Posts: 10
Joined: May 2013

Thank you for your support R&P, I feel a bit better, good to know about NSAIDS and Tylenol, I took a lot of those during the struggle with my ex wife and I wonder if they may have caused or contribute to the tumor to come. I just want to make sure that this thing doesn't come back once they remove it. I'm trying to convince myself that the struggle and the pain meds caused it, I don't want to live in fear of coming back... thanks for your suggestions and encouragement for my babies, I really want ot be aorund my family for a long time.

I'm also still hopeful that is not cancer but I'm afraid of biopsy because it may be inaccurate... I guess I rather have surgery than leaving with the doubt. Thanks for leting me vent without having real questions.

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Fab66,

 

'The worst case scenerio is that you have Kidney Cancer, you will need surgery and  the cure rate for a 2.6 cm tumor after surgery is close to 100%. This is not even on the same page as brain Cancer. After what you went thru a diagnosis of Cancer is a real shock. you will be fine for your new partner and children. All of us on this board have been thru this. It was not fun when they told me I had Cancer 11 years ago, Things will get better . Trust me.

 

At this point get your diagnoses confirmed and get ready to kick that little sucker where it belongs if it is Cancer.

 

Icemantoo

 

fab66
Posts: 10
Joined: May 2013

Thank you Icemantou, your story is very helpful and gives me hope. The Glioblastoma my ex wife had was horrible, they gave her no chances since the beginning, I watched her slowly regressing to a child and then to an infant, that is my idea of cancer and I'm still leaving with the horrible memories... I know this is different and I thank you for confirming it and giving me hope. I'm just angry because I thoutgh I paid my dues with cancer, hospital, doctor appointments, chemos, etcetera and now again!!! It just seems unfair, I'm only 46...

Thank you again for your positive comments and I'll keep hoping it's not cancer!

 

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

I'm not a religious person, and you'll never see my offer prayers, but sometimes Buddhist philosophies fit the situation.  Such as:  everything happens for a reason.  The caveat to this is that the reason isn't always clear.  I have to believe this as I've had a somewhat difficult and traumatic life, and bad things keep happening to me.

 

I'm 41, and have 2 cancers.  I also have an Autistic child.  If dealing with my only baby having a disability wasn't enough, my mother became disabled also.  I  now take care of them both, while dealing with a potentially life threatening illness.  Despite this, I cling to my future plans.  I want to see my little guy speak, take care of himself and grow.  That's what keeps me going.  You have to find something within yourself that puts one foot in front of the other.  Not all cancers are as horrible as your late wife's.  I'm so sorry to hear about that.  No doubt you have a bit of PTSD from it, and of course all that new found shock to deal with.

 

Know that you are not alone.  Make this site your guilty secret if you have to.  There is always someone here to hold your hand and give you e-hugs.

 

Another thought:  Yes, the biopsy has the chance of a false negative.  However, I'm willing to risk that chance in order to spare myself  a 5th

surgery in less than a year.  And my 7th in 4 years- 2 of which were Laparascopic, and I'm sure I've been left with some adhesions that will make a kidney surgery challenging.  I'm scared sh*tless though.  I havent' slept all weekend due to the anxiety of it.  I hate pain.

Djinnie's picture
Djinnie
Posts: 911
Joined: Apr 2013

Hi Rain, 

Good luck with your biopsy this morning, we will all be thinking of you:) I have been practicing Buddhism for over ten years now, it does not appeal to everyone, prayers are a little different, but you are part of mine today.

Djinnie

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I am hoping and praying for all the best for you!

Djinnie's picture
Djinnie
Posts: 911
Joined: Apr 2013

I can understand how hard this must be for you, after all you have been through. Quite a few of us have had to nurse loved ones through this awful disease, it is soul destroying. Being angry about this manifesting in your life again is perfectly natural.

However, you should try to replace that with a sense of gratitude that this growth, if cancerous, has been caught in time, there are many people who are not so fortunate.The good thing is the tumour will soon be dealt with, and you can look forward to a happy future with your family. 

We all have to face difficult challenges in life, it is not easy, we have little choice but to face them and move on. Try to focus on your future not your past, that will serve to motivate and inspire you.

All the best:)

 

Djinnie

 

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Hi Fabrizio,

The fear of getting such a diagnosis is overwhelming to anyone, and especially with your history I fully understand your reaction.

But first of all, you havent been diagnosed yet, and theres still a chance its just a cyste or another benign growth on your kidney. I know its borderline impossible, but still, try to keep calm until you actually know for sure.

And as mentioned elsewhere in this thread, should you really be so unlucky as to join this club, a tumor that small results in a 90%+ long term survival rate. You will be around to bug your family for many years to come :-)

/G 

fab66
Posts: 10
Joined: May 2013

Thank you Galrim. My partner just said that as well, wouldn't be wonderful if it's not cancer? I'll try to keep calm and focus on the high LONG term survival rates. Good to know you are in my age group and doing well.

- Fabrizio

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

hi fabrizio,

we all know how hard this is for you...trust me we have all been there or with someone who has.  it is difficult and quite simply terrifying but you can get through this.  you have definitely come to the right place.....the people here are wonderful and they will tell you exactly how it is if and i mean IF you need to ask any questions.  as galrim already said you are not sure what it is yet and to be honest the wait is the worst part.  once you know what you are dealing with you can make a game plan!!  you have 3 good reasons to get over this and believe it or not they will help you even though they don't know they are doing it!!!  we are thinking of you and we are keeping our finger crossed for you too.  stay strong and try to stay positive.

eims x

fab66
Posts: 10
Joined: May 2013

I just got up (live in San Diego) and first thing I did is to come here and see if there were more comments. I can't explain how helpful your comments are so I can start my day with a more positive attitude. I'm also not religious R&Pours but I do belive that there is more here and nothing is a coincidence. In fact my father who is my only direct family member left is coming to visit from Rome after almost 10 years... I feel bad that he will get this bad news but I need his support more than ever ans so does my partner. I must believe that this is not a coincidence and everything is happening for a good reason, mi co-worker always says "there is a gift in everything" and that is what I must focus on. Making plans for the future will also be helpful, I must belive there is a long future ahead of me, I need to make peace with the past, I still think my anger with the past cause all this and it's difficult to let it go

A big Hug to everyone and good luck to R&P, your strength with all challenges you are facing is very inspiring.

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

Hey Fab guy.. hang in there...  with such a small tumor (wanna trade..?) you are actuallly lucky it got found this early.  Kidney Cancer (RCC) is one of those silent Cancers, with usually no symptoms.   Which I was surprized no one yet mentioned it, but your "symptoms" may not be the result of RCC... but if that is what got you to the doctor, then it is a plus.  I know you do not think you are lucky.. but at this point you are ahead of most of us here...

You will get through it... we all did..!

Ron

fab66
Posts: 10
Joined: May 2013

Ron, I read your story, it is very inspiring and wish you the best of luck.

You may be rigth that my symptoms may be from somehting else, I was diagnosed with GERD and Gastritis and I have a gastroscopy and coloscopy scheduled for June 6th; I don't fell like doing it anymore though and think that everything is caused by this tumor and need to focus on this first. I forgot to mention that I also have on and off burning when I urinate and ligth pain on my back (rigth side), it's interesting that the pain was a lot worst a year ago and it's almost nothing now, I also had a lot of fatigue before and now I don't... I really don't know what to think... sometimes I think my immune system has been figthing this thing alone and that is getting better as the painful old memories are going away...

I feel horible for my partner, we just started this new life together (she divorced 2 years ago) and we were so happy; my 2 months daughter just made her first smile but everything is bittersweet now... I know that I have the resposibility to be happy and positive for everyone around me and believe me I'm trying but I just feel like crying and to be alone... she is also crying

Thanks for reminding me that I need to focus that I caugth it early.

Djinnie's picture
Djinnie
Posts: 911
Joined: Apr 2013

Hi , I can imagine that this is the last thing you would want in your life right now. You have just started a new chapter in your life and everything at last was coming together for you. Having cancer is not something any of us want to deal with, but it is what it is. You and your partner are happy together, you will be strong for each other and come through this. This is not something that is going to drag on incessantly, once you know what you are dealing with a decision will be made very quickly. Within possible a matter of weeks you could be on the other side of this.

The hardest part is the acceptance,once you feel able to do that you will be able to deal with it. You have that strength within you, we all do. In my experience the outcome is never quite as drastic as we imagine. You have your whole life ahead of you, ultimately this will not destroy your happiness.

Stay strong, we all want to support you through this.

 

Djinnie

fab66
Posts: 10
Joined: May 2013

I'm so glad I found you and this group, you are all helping me to believe that there will be happiness again. I agree that the outcome is never as bad as we think, the fear to have to deal with pain and to see your loved one suffering is difficult and often worse than actually going though it. I'm thankful that this thing is small, I really hope it hasn't spread somewhere else and I won't have to go trough chemo and readiation... surgery doesn't scare me as much as long period of drugs and many doctors' visits.. I'll keep everyone posted on my doctors visit, tomorrow is my first one with general doctor and then the appointment with specialist. Thanks again, I'll promise to stay strong mor myslef and my lovely family.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

My 4 cm tumor was also an incidental discovery, but life altering.  I am now two weeks past surgery and except for the tiredness that accompanies major surgery and a little indigenstion I am GREAT!

You will be too!

You have found the right place to be since there appears to be a fount of good people with great experience to help you prepare for every step.

I wish you all the best!

Michael

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

Fabrizio:  I'm glad you found osme comfort in my words.  Belive me it took me a very long while to get to that zen point emotionally.

 

OT:  and about my biopsy today:

 

They couldn't do it.  I was in pre-op, prepped, anxious waiting to be poked.  Well, the radiologist spent 30 minutes with the Ultrasound trying to find the right spot.  There wasn't one.  My tumor is very deep to the kidney.  He measured, and it was 5cm down from the skin, all the way through, and near to the collecting system.  He would have had to go through ribs, and the entire kidney.  Very dangerous to do as my spleen was very close.  The Dr said for safety reasons, he was cancelling.

 

It should have been CT guided, but my Uro ordered US I guess not knowing the exact location of the tumor.  So after a frustrated cry, and being mad that I had to be there at 630 am for nothing, I got dressed and went home.  Waiting for the Dr to call now.

 

I see I have 3 options at this point:

1- attempt it again (in months when they squeeze me in)by CT

2-Go directly to surgery (if he offers that?)

3-do nothing. 

 

 

fab66
Posts: 10
Joined: May 2013

Wow, that is frustrating Rain but someitmes I wonder if these things happen for a good reason, meaning that you'll do the surgery and will discover that it was the best option for you (cancer was growing or who knows???) What I experienced previously with my ex-wife is that there are not coincidences... in fact something strange happened to me today, I went out for a walk with partner and kids but I asked to come back to the house to drink some water, well in that moment I was desperate internally and my family was waiting outside in the car, I felt so lonely and needed some help. I was in the house for 1 second and my father called me in that moment and helped me a lot to get outside my head, I know for a fact that it was not a coincidence... I guess my point is to trust that wathever happens is for a reason that we cannot understand now and keep having faith.. not sure on what exactly but that something out there is watching over us... I have to believe that or I'd go crazy, cannot accept randomness of events... I guess I'm getting into difficult personal conversations here but my day was tough and I'm trying to regain trust in life and in the universe, I need to stop beeing angry and stay present...

Regardless I understand how frustrated you feel now and that is hard to accept; I'd have probably had the same frustrated reaction...

Good luck, keep us posted.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Do try to remember that watching and waiting, assuming proper monitoring, is not 'doing nothing' and at this time may represent the best choice. 

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

I have another option.  Get another opinion.  Calling my general surgeon tomorrow to hook me up with one of his Uro buddies.  As much as I think my current Uro is a briliiant surgeon, he made a bad judgement here, and I've lost trust in him.  Plus, no way in he** I'm waiting until June 14th to discuss this fail with him. 

 

I'm looking at it this way:  Partial Lap is available to me until 4 cm, and it's stage 1 until 7 cm.  Figure that buys me a ocuple years.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That sounds like a sensible approach and a good way of thinking.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

That is a great choice!

 

fab66
Posts: 10
Joined: May 2013

That seems the best option, I'd get it out until is small.

fab66
Posts: 10
Joined: May 2013

That seems the best option, I'd get it out until is small.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Fabrizio, that wasn't the option I was commending.  

Given the need for recovery from all the recent surgical and other ordeals, and time for some better quality of life, I believe watchful waiting is the best option right now.  The lesion, whatever it is, is unlikely to grow enough (if at all) in the next year or so, to make any difference to the risks.  and the prognosis.  There are, I think, greater risks in having yet another surgery so soon, in a physically and emotionally debilitated condition.  I would prefer enjoying some better quuality life for a while and regaining more strength and morale.

There's no need to rush into yet another major surgery - if it becomes necessary, it will keep for quite a while.  If the lesion starts to show significant change then that will be the time to intervene but not before.

I was agreeing with the plan to get a second opinion andthen, probably, go on to a close surveillance schedule, using whatever scan method seems advisable and acceptable.

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

TW:  yes, that was my thinking.  Only caveat being, I don't want any more contrast CT's.  The last one traumatized me (7 IV tries, and molten lava in my veins).  If I have to be subjected to constant scans, they'll have to be US.  Otherwise I may chicken out.

 

Hoping my Uro calls today.  From what the radiologist said yesterday, he doubts a CT guided biopsy would be successful either, due to the depth of the tumor in the kidney.  So it's a mystery what the Uro will suggest now.

 

It's still early here (7am) so I have a couple hours before I can make phone calls.

val1963
Posts: 27
Joined: May 2013

Second, third, fourth, whatever it takes to help you understand and decide the best treatment for you Rains!

Remember to keep breathing...  deep breath in, exhale all the way out...  clears your head and relaxes your body.

we're going to be OK!!!      Stay in touch!  Valerie

 

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

Well, I tried to contact the Uro this morning.  Couldn't get past his secretary.  I gave her the low down and this was her response"

"He's too busy to look at it, but I'll pass along a message"

Yell wtf?  Well, I won't type what message I wanted to give him.

 

I'm taking a break from everything for a while.  I cancelled all impending appointments with all my doctors this month (including him).  I'm at the end of my rope and I can't do this anymore.  Maybe in a 3 or 6 months I'll feel differently, but the stress of it is starting to make me seriously depressed.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

I'm have been appalled and frustrated reading about what you have been going through.

But one thing concerns me.  I may have missed it - but are you under the care of an oncologist - or - preferably - an RCC expert?  You seem to be only dealing with Urologists and Surgeons.  If that is so you need to change tactics.

What I think you need now is a RCC expert to guide your next steps.

Stepping back and taking a break from all the mayhem is also a good idea.  But not for too very long, OK?

 

-N

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

Yes I have an Oncologist who's been dealing with the Thyca stuff.  Or rather, not dealing with it.  She's useless and I cancelled my appt with her too.  Let's put it this way-she was the one who ordered my original CT back in Feb.  AND SHE NEVER GAVE ME THE RESULTS.  I had to go see my GP to get them.  When I saw the Onc  April 9th, she didn't even have my chart with her, and she hadn't looked at the CT.  I gave her the run down and her response? "oh, maybe we should send you to a Uro?"

 

See what I'm dealing with here?  The problem I'm facing is I'm stuck with the BCCAwww.bccancer.bc.ca.  One agency doing their socialist wonders over all cancer cases.  I cannot find another Onc, unless I go out of country.  I even tried to have a referral to PMH in Toronto, but the BCCA refused to release my slides.

As for RCC specialists? I'm not privy to that list.  See above ^

Oh, and I left 2 messages at the Gen Surgeon's office.  They never called back.  Scratch that idea off.

todd121
Posts: 641
Joined: Dec 2012

Staging is not just about size. A small tumor less than 7 cm, that grows into even microscopic veins, is considered Stage 3. So talk to your urologic oncologist about the location of the tumor as well when you are thinking about what you are going to do.

I know this from my experience. I was Stage 1 going into surgery, and my pathology report came back with the tumor having grown into some of the tiny veins which couldn't be seen pre-surgery which bumped me to Stage 3. There's a big difference in recurrence rates between Stage 1 and Stage 3. (10% to 40-50%). I was very shocked when I got my pathology report back. I keep seeing this simplified explanation of the staging being repeated on this website. A very small tumor is "probably" going to be Stage 1.

When you read the staging descriptions, it's easy to think of the tumor growing outside the kidney if it's small as being unlikely. The problem is that there are veins inside the kidney, and if the tumor invades those, then it's a Stage 3 tumor.

Todd

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

Thanks Tood, that made sense.

 

Ok, today's chapter of As the Stomach Turns:  Uro's secrretary finally called back around lunch time.  She said the dr wasn't in, but my report from the Radiologist had come in, and she bumped my appt with the Uro up 2 weeks.  I see him next Monday at 4 to discuss the current gong show.  Anyway, apparently the report said something to the effect of :

"Ct guided biopsy may possibly be attempted"

 

I'm going to decline that lovely offer of more poking an prodding.  Possible attempt isn't very reassuring.  To go through all that to have them fail or it be inconclusive is just not worth the risks.  I'm curious to see what the dr thinks.

 

Not sure what my other options may be.  If they can't biopsy it, and we can't know for certain it's cancer, I'm not sure I'm up for an invasive surgery.

todd121
Posts: 641
Joined: Dec 2012

My urologic-oncologist has an excellent website where he goes over the different types of kidney masses and the probability/occurrences of each type and all the treatment options.

Have a look:

http://www.kidneycancerinstitute.com

Something like 90+% of these complex cysts are RCC (as I recall). For that reason, plus the unreliability of biopsies in the kidney, his suggestion for me was to do the nephrectomy. But I had a much larger mass (6.9 cm) and it was located in the center of the kidney making a partial nephrectomy impossible. Small tumors located in the upper or lower pole are good candidates for partial nephrectomies. I was praying for that 5% or so that would be a benign tumor of some kind, but it didn't happen.

Check out his website. It's really a great resource. If nothing else, you'll learn a lot about what it could be and you'll see all the latest treatment options described.

Todd

chenzo's picture
chenzo
Posts: 3
Joined: May 2013

Hey Fab, I also had a 6.5cm tumor in my right kidney and only found out due to having a kidney stone. I had my right kidney removed on the 29th last month. Apart from a little pain..I feel all good mate. You will be ok, there are enough people on here who have had the same done to them who can shed light on what you are going through. My cancer was a grade 3 and I got told yesterday that they got it early and got it all...that means NO chemo and NO radiation....by the sounds of yours, you aslo got it early...I have looked into everything and anything i can about Kidney cancer....Dont go and worry yourself to a state of breakdown over it...She'll be apples Mate

Fab, you sound like you have a lot of love and support from family and friends....we, also wish you the best

Cheers Mate

and i forgot to mention, im only 39...Bloody cancer knows no age, color or gender...***** disease

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

One thing is that there is no do over. I hate this expression but, "It is what it is."  Fears, and negative thoughts are their own cancer. It will rob you of rational thought, happiness, and motivation. So most importantly, deal with the initial diagnosis and get over it. Once you have come to terms with it, your life can become so much more productive. Decision making is much clearer. Different options make more sense. Unless errors have been made, there is no going back. Adopt the philosophy that you will be LIVING with cancer. Not dieing of it. Good luck.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Wish I had said that!

You do cut to the heart of the matter Fox!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

it does like us bikers, maybe its the leather...

mkf1958
Posts: 8
Joined: Jan 2013

Found out in December that I had about the same size tumor.  No biopsy...surgery! March 13th went through a partial nephrectomy and the pathology showed clear cell(RCC).  The doctor said it was encapsilated and do not worry.  Removed the tumor and cured in a 2 1/2 hr. surgery!  Surgery wasn't bad.  Take time to heal and love those kids and your wife.  Alot of years ahead!

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