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"Most Concerning for RCC"

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Hi.  Rich, 43, went doctor for stomach pains and after ultrasound and CT w/wo contrast, my GP calls and says I havecancer On March 28 around 7pm.  Not what I expected to hear.  I have an appt. on April 19, with Urologist and don't know what to expect.  The mass is  2cm and I was hoping I may find some answers as to what I may be up against, and is 2cm too small for surgery, worried about the whole situation in general but staying calm.  I've got 4 children, and 2 of which are only 7 and 9 and a very supportive wife.  I really appreciate any information I can receive.  

Thank you and GOD Bless!

Rich

 

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

hi rich,i know my doc told me that they wouldn't do anything if the mass was smaller than 4cm but even with that information you are in a good position as they will monitor you so closely if anything changes they will be straight in there!!  discuss all the options with your doctor and decide what is the best one for you.....

eims x

 

GSRon's picture
GSRon
Posts: 1136
Joined: Jan 2013

Hi Rich....  You may not feel great about the news now.. but you MAY of just won the Cancer Lottery..!  By this I mean it sounds like it got caught very early, which means you win...  While some of us did not get diagnosed until the Cancer has already spread...  Others here can give you better doctor advice.. but to me it sounds like you will only remember this bump in the road of life...

Good Luck..!

Ron

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks Eims and Ron.  I am happy to have come across this site. I have been reading so much online my head is swirling with questions.  I am grateful that its very small and early compared to what most of you have dealt with.  Some stories I've read were less than 2cm and they've had surgery.  With the new drugs out, do you think they'll put me on Meds to shrink it and watch rather than going to surgery.  My fear is it possibly spreading from being cut open.  Forgive my ignorance if I'm completely wrong.  I'm still somewhat in disbelief.  

 

Thanks

RichW

fleurdelis
Posts: 3
Joined: Apr 2013

Hello RichW,

 

Please review my profile so that you will know my history.  Tests showed lung nodules prior to the nephrectomy but the mass in the kidney was pushing the kidney wall out. After radical nephrectomy in September 2011 (stage 3B), I had a cat scan in March 2012.  That did not show any evidence of cancer.  But, it did show a hernia from insufficient sutures after the nephrectomy.  The laproscopic hernia surgery in April was unsuccessful do to issues with the mesh.  In August 2012, I had abdominal surgery to remove that mesh and replace it with another.  While in the hospital, I ran a fever and chest x-ray and cat scan were ordered.  That test showed nodules in both lungs and the doctors were concerned.  In September 2012, I had a PET scan.  Renal cell is difficult to pick up.  In December 2012, I had a lung biopsy on one of the largest nodules.  It was inconclusive.  Around that time, I was having back pain but I have degenerative disc, bulging discs, etc.  So, I atrributed the pain to that.  But, it became almost unbearable to walk, sit, stand, etc.  Tests showed a mass on L2 and L3.  The neurosurgoen removed what he could and killed the rests in surgery February 2013. The pathology report showed renal cell carcinoma.    I made a trip to MD Anderson in March and numerous tests were run.  The brain MRI showed some issues on the skull but not on the brain.  No doctors in Louisiana suggested that a brain MRI should be done.  The Houston doctors are now more concerned about the skull than the lungs.  I am currently on Votrient 800 mg per day which I began March 15, 2013.  

In summary, stay on top of your health.  Insist on full-body tests.    You are very fortunate that yours was caught early.  Unfortunately, renal cell isn't usually detected until the symptoms appear and then the outcome is not as good.  I wish you the very best.  

 

 

 

Talaward's picture
Talaward
Posts: 1
Joined: Mar 2013

Hi Rich.  As scary as it might feel to know you have cancer, please stay positive.  It is two years since I had my right kidney removed with a tumor 9cm in diameter and 6 lymph nodes out of 12 with cancer.  I did as much research as I could and added those things to my diet that anyone suggested could help.  Last year they found another tumor on my spine and I had three cycles of sunitineb chemo at full strenght.  My tumor shrunk from 4cm to 1cm and I was given the choice of another surgery to remove it.  I wanted it removed so in November last year I went through another surgery same as the first one.  At my six week follow up I  was told that my surgeons were amazed that the lab work on the tumor came back showing the cancer cells were dead.  This was a surprise because RCC is not normally "cured" or killed off by chemo.  Today, six months later, my blood work is almost back to completely normal levels and I am in theory cancer free.  

I tell you all this to encourage you to be pro-active in managing your own cancer.  I get blood tests done 6 weekly, monitor my white blood count and platelet levels etc.  Last year when my blood count was trending in the wrong direction I asked for further scans and MRI's which is how the second tumor was found.  I drink "Jason Winters" tea daily, take "Percy Weston" vitamins and minerals, drink chlorophyll liquid daily, use fresh lemons, and take extra large dose of vitamin C daily.  (Google the above "names" for their story).

 I am a 58yr old New Zealand lady and fortunately my children are grown with children of their own.  You have every chance of living and becoming completely healthy for many years to come.  Stay positive and be proactive.  You care about your health more than any doctor ever will.

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

That's a very informative posting.  Presumably the docs put your totally dead cancer cells down to the Sutent? Great news, whatever!

Djinnie's picture
Djinnie
Posts: 761
Joined: Apr 2013

I am sorry to hear your news, but this is already a positive outcome. How fortunate for you and your family that it has been caught so early. Here in France if a tumor is between 1 & 2 cm they will remove it with Radiofrequency Ablation, so that may be an option. Right now you are still processing the information, you are in shock which is pretty normal considering the circumstances.

Best wishes to you.

 

icemantoo's picture
icemantoo
Posts: 1457
Joined: Jan 2010

Rich,

 

Nobody wants to be diagnosed with RCC, but having a tumor at 2 cm is as good as it gets. When you meet with the Urologist you will explore anty options available other than surgery.

Unfortunately surgery is probably in your future sooner or later. All of us on this board have been thru the surgery. Not fun, but it beats the alternative. A full and complete recovery from the surgery alone is in your cards. Mine was almost 11 years ago. Faye across the street is at 18 years and is already 82 years old so she  may be limied  to another 15 or 20 years.

 

I wish I could sugar coat the surgery, but than I would lose my credability.

 

You should wait a year or so after surgery for strenuous things like roller coasters, water skiing and bungie jumping.

 

Icemantoo

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

you mean i have to wait a year icemantoo!!??  how about a skydive?  ;-)

eims x

icemantoo's picture
icemantoo
Posts: 1457
Joined: Jan 2010

Being so young why not do the sky diving ater 9 months or so.

 

Icemantoo

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

trust me icemantoo im not that young!!  ill leave the skydiving to someone else!!

eims x

icemantoo's picture
icemantoo
Posts: 1457
Joined: Jan 2010

Eims,

 

Your Bio says 40 to 49. That sure sounds young to this old guyzer who will be 70 this summer. For my 60th birthday (11 months after surgery) the family met at Club Met  in Fl and I went on a 15 minute water ski run with no falling. You being so much younger I expect something a bit more than that.

 

Icemantoo

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

ah go on ya big ol charmer you!!!  found out i had the tumour the day after my 41st birthday!!!  ooooooo is that a challenge icemantoo??  wouldnt it be nice to organise a challenge for us all to do together somewhere?  its just a little something we could think about!!!  and you certainly look great for what did you call yourself, an old guyzer!!!!

eims x

icemantoo's picture
icemantoo
Posts: 1457
Joined: Jan 2010

Elms,

 

That is an old picture from last May. I will try and update it after I turn 70 in July and Icewoman turns 69 in September. Sorry no babys to hold, but we do have kids 46 and the little one will be 44 in 11 days and 5 grandchildren ranging from 11 and one half to 17 later this month..

 

 

Icemantoo

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

icewoman looks amazing too and as i always say children keep you young and you both look really well on it....

eims x

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks Djinnie and Icemantoo.  I really appreciate the encouragement and all the input.  I am eager to find out what the Urologist has to say on the 19th.  I want to do as much research as I can so i am aware of all options available.  I feel as if I've been in a fog for the last week and have lived on my laptop and phone trying to research as much as I can.  I think hearing the term cancer is a shock when anyone hears it.  I've had many positive and many negative thoughts and feelings on the subject  this past week all the while trying to act like its not bothering me.  I don't want my wife and children to worry.  I believe GOD is in control.  

 

Thanks

RichW

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

hi rich, i know exactly how you are feeling and it is a rollercoaster of emotions at the moment. sometimes though too much information can make it worse.....you will come through the fog and to be honest everyone has that feeling. if you didn't now that would be something to worry about. it is not long til you see your urologist and they will have a game plan for you. write down your questions because trust me you forget everything when you sit down for your consultation. no-one ever wants to hear THAT word but i promise you that you will surprise yourself.

eims x

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks Eims.  I am so glad I came across this site.  I have read so much just from this site alone.  I will be making a list of questions.   reading all the success stories and the trials you've all been through is truly encouraging!!  

Thank you

RichW

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

Hey RichI'm 35 and have the same scenario as you. 2 kids and wife. My mass is 1.6cm found by accident. I have a robotic partial scheduled on May 1st. The oncologist and urologist both act like its not a big deal at all! I was scared as hell but this site help me putt things in perspective. You and I are the lucky ones and I only hope I can be as brave as the other folks on this site later on in life. Believe me though I know how you feel. I feel for ya........Hang in there Rich.

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

It's understandable being worried and scared. But you guys will do alright. We wish everyone who joined this forum had a prognosis like you guys have. Think about us as the years go by. And love your family. You are dodging a bullet. Good luck.

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks cran 1.  I am curious as to when you found out.  Seems like they arent going to watch and wait with yours.  I guess we are pretty blessed, if i can say it that way, that they found ours very early.  I really like the site and it is a blessing to have people who have gone through this and understand. Thanks for the encouragement!  I'll pray for you that your surgery goes well!

 

RichW

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

Found out about.. 2 months ago i think. I also have lower back pain but the oncologist and urologist both say not related. Doesn't mean I don't stress about it though. Give it some time and you will start to loosen up about it. I finaaly relaxed this weekend after talking to the surgeon and had a six pack and grilled out with the family. Back pain bothers me though hahah.

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

Found out about.. 2 months ago i think. I also have lower back pain but the oncologist and urologist both say not related. Doesn't mean I don't stress about it though. Give it some time and you will start to loosen up about it. I finaaly relaxed this weekend after talking to the surgeon and had a six pack and grilled out with the family. Back pain bothers me though hahah.

Patrick72
Posts: 14
Joined: Feb 2013

Good afternoon Rich.  Sorry that you have to join us on the boards here. As the others here have said, you caught it early and with the size that it is without knowing any more, there is every possibility that after recovering from surgery you should be pretty much good to go and be on your way to a long and happy life.

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks Foxhd.  It's people like you that have gone through this that help me and countless others see that there is a future.  I feel very lucky to have found it early but wish i nor anyone has to go through this.  I look forward to all the input and advice i can get from everyone.  Patrick 72 Thanks for the encouragement.  I'm eager to meet the Urologist and find out exactly what type and so forth.  I've had a back ache for the past 5-6 months on my right side and blew it off thinking it was my bed.  It doesnt bother me when im up and about only in bed or on my recliner at times.  Has anyone else had this issue?  I'm curious because they say its not something I should feel especially with it being only 2cm.

 

GOD Bless

RichW

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Fleurdelis..  GOD Bless you.  You've gone through so much.  I will Definately be staying on top of it.  You will be in my prayers as well as the others.  I'm truly thankful they caught it early,  still somewhat in shock but Definately Thankful!  I feel like I'm constantly thinking about this disease and so many others have so much more going on.  Hang in there and GOD Bless.

 

Praying 

RichW

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

Rich, normally you would not feel anything that small. Many have softball sized tumors that are never felt. Maybe I should have known because I noticed that when I exercised I was developing a scoliosis. Blamed it on a bum knee and compensated posture. Pain and lesion size are related to how involved a problem is and how close it is to a sensory nerve. So small can cause pain. Large, not so much. Not having pain is what lets the bugger get us in trouble.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

That's what I did anyways.  I was just moving into a newer house that I barely could afford with three kids under 7.  Life was going great then bam, they drop the C word on me.  I thought NO No... u meant to say your back hurts because your too fat and drink too many rum and cokes on the weekends. Cancer!  However that being said it is not a death sentence for you.  It is mostly by luck people like you and I have tumors like this found early. As was pointed out, many don't know they have a tumor till they urinate blood one day and often that's too late for curative surgery. 

 

So my honest opinion in sum, its like I feel when people say 'getting old sucks.'  Well it beats the alernative.  welcome to the club.  Surgery sucks for a few but its easier for most.  Best of luck, hug your kids and have a shot.... but iust one as alcohol is bad for kidneys. Don't get me wrong I was freaked out and still am at times.  But have faith

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks flatlander!  I need advice..  After being told on the 28 of March I had RCC, my wife and I were going over all my labs from the previous year and I was treated in Oct. 2012 for Microscopic blood in the ruin which my doctor said was a UTI.  My wife was upset when she read the UTI and asked why i never said anything.  I told her i thought it was no big deal, Until now.  My pcp asked if it ever happenedbefore and i said no and he said UTI.  Ut took over 2 1/2 hours to see him that day and i told the nurse i had to leave in 10 min. doc came in 5 min. visit was over.  i was rushed to say the least.  Now having said that I was checking the results thoroughly with my wife of this urin test for creatine level which was within range and had my PCP visit this past Thur. And when I brought up that test he got all big eyed and said he never recalled it.  I brought up the creatine level and right away he interrupted me and stated it was normal in that test...  Now my wife and I look at each other kinda in shock and the doc basically rushes me out to get chest X-ray, labs and urinalysis and sends me on my way to clear for surgery.  We go home that night and the letter stating UTI is gone and the test results are altered!!  Let me add his demeanor was completely Difft this visit than any other.  I'm paranoid now as to why he would do this!  I am go to a urologist he highly recommends and I'm extremely nervous!  I had already suffered from anxiety in the past and this whole ordeal has been stressful and now I'm paranoid about going under the knife and happening not to come out of this surgery!  I totally have no confidence in My PCP now.  My insurance is all network docs!  My sister is an RN and also read these reports and is shocked as well.  Any advice is appreciated!!

RichW

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

He screwed up by overlooking it back then just dismissing it as UTI and not pursuing it, and now he tries to cover it since (Im no lawyer) you have developed cancer and that basically spells malpractise...just my five cents. However, given your case I dont think you should worry about the OP but change afterwards...

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

To start, Rich may I simply agree with others that you are in the best possible position for a total recovery and no problems. I and other recent newbies to this site, came here pretty much freaked out, with wild imaginations!  So you are OK, know that. Deep breath and you already have the answer, God is with you and in control. I send my prayers for your peace:)

Now though, the doctor thing!! That is outrageous but unfortunately probably not uncommon:(. Doctors are busy HUMANS, and make mistakes, don't listen well at times and often don't listen at all. I had similar experience:  went to my doctor complaining of pain in flank area for months!  I even marked the spot with black marker so he would see it was kidney area. His response, "well we can run a quick chest X-ray" so he ordered one for "chest pain" (No, I said flank pain). Nurse left me a message, x-ray clear, you are fine, click). So I realized it was up to me to be proactive.  Insisted my Rheumatologist run whatever tests for my constant pain. She ordered lumbar MRI, again never gave me the results so I ordered a copy of my records, and read for myself, "possible renal cell carcinoma". Need I say I have very little faith in the medical world, have spent 8 years being told I am fine while I suffer!!  You have the early advantage there too....absolutely be your own advocate in charge of your health care.  Insist that they listen and are actively monitoring your progress, or find a new doctor. Begin your journey with hope and a positve outlook, but do not be naive enough to assume wheels are turning once you leave the doctors, I lost my trust in that. Obviously, I am venting a bit, but there is good information to be had for you from my experiences: 1) we both had small tumors and should be fine as far as cancer goes, praise God! Don't be freaked:). 2) Be in charge of your own progress, doctors can and do fail you sometimes (to be fair, they are crazy busy in many practices) If you question whether they are listening or working in your best interest, jump in and speak up, get a second opinion, whatever until you are sure things are being done timely and efficiently!  They see us for 10-20 minutes and we live with us:). Think we have some accurate hunches but back to prior advice, try not to worry. Spend time on this site and you will feel assured.

Have the best weekend with your lovely family!   Gale

Djinnie's picture
Djinnie
Posts: 761
Joined: Apr 2013

Hi Rich,

Your primary care doctor having taken steps to cover his back,does not alter your  test results in respect of the tumor. He is obviously concerned for his reputation and not his patient, nothing new there then. The fact that your PCP can't be trusted does not mean that the Urologist can't be. Have you looked up the Urologist on the Internet to check out his credentials? Do not be rushed, discuss everything with the Urologist and make sure you are comfortable with everything. If you don't feel comfortable with this particular Urologist you can always find another from your Insurance list.

You have time to sort everything out, you need to feel that you have some control over this situation. Concentrate on finding a Urologist and arranging an operation, and when that is done with obviously you need to find a new PCP. 

When I lived in Dallas in 2003 my Internist found a tumor on my kidney,it was just under 4 cm. I was sent to a Urologist who advised me that I needed an operation immediately, he had an opening the following week. I did not want to be rushed, but he advised me that it was urgent and went on to tell me my prognosis was around 3 to 5 years. At this point he opened his door and told his nurse that he was hungry and asked that she get him a sandwich, needless to say I walked out.He went ahead and booked the surgery, I phoned the hospital and cancelled it.

I started researching, trying to find the best kidney cancer specialist in my area.I found one at Zale Lipshey in Dallas, he was brilliant, made me feel at ease and I was confident in him. That is what you need to be, any operation is daunting, this one in particular. It is not unnatural to have concerns about coming through the op, but you will you are a strong young man. 

Try to stay calm, take some time to make the right choices for you. You will come through all of this the better for it.

Sorry for the long posting.

 

All the best

 

Djinnie x

 

 

 

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

Do you have a copy of the original report that he altered? It was bad enough he was negligent and diagnosed it as a UTI...it doesn't sound like you had any other symptoms of a UTI...but altering your medical record is a big time criminal offense. I was a medic and that was drilled into us and I am sure your sister will tell you the same thing...Everyone here knows my posts are usually books and when I was a medic I was one of the few that actually used the "supplemental report" when documenting calls...because even though you might know you did something if you don't document it you didn't do it in the legal world...but altering a report later could actually land you in jail...and if he did that what else has he done and I know Drs. are busy and there a 4 Drs in the practice I go to but they have a sign that says if you have waited more than 15 minutes let the front desk know...and even with that I never feel like I am being hurried. You definitely need to find a new PCP. My baby sister is a nurse too...she just turned 55 and she graduated from Nursing School last May...so proud of her. Is your sister in the same area as you? So that maybe she could recommend someone..I don't know where you live...some of us are so lucky to be near great cutting edge medicine and Drs. I live in So. MD and can go to DC and Baltimore in about the same time...I have done both and it is worth the hour and a half drive but I know that many people aren't that close to the big hospitals..

 

http://www.whcenter.org/body.cfm?id=559481

 

This is a link to my Dr. and he was wonderful, very patient oriented and compassionate and loves what he does.

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks for making me feel better about the situation.  It totally caught me by surprise to see my PCP take this route.  I believe GOD is in control but my faith is shaken and I am out of sorts over this. It really helped to get this off my chest.  Really I appreciate and I'm grateful to you all.  I know many others have it way worse than I!  I am just overwhelmed with this and I never would have thought my doctor would be like this.  I need to take care of me as you say!  I totally get it..  Thanks for understanding..

RichW

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

Rich, Gale, Djinnie - what shocking stories of medical 'care' that was at best insensitive, at worst negligent.  Those of us in good hands probably don't realise how lucky we are. In fairness, Gale is right that doctors are also humans and prone to the same failings as the rest of us, but they are making very good livings out of their work and should not let us down like that. 

It all underscores the importance of Participatory Medicine and looking out for yourself - get a second opinion if in any serious doubt and don't hesitate to move on if you feel you need to - it's their living, but your life!

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

Everyone is right, if no other complications are found you are in a good category that many aren't lucky to find themselves in...I know how scary it is and I think the one thing everyone has said here is very important...You are in charge of your healthcare and sometimes we have to get a little pushy...if you don't like what you hear at this Urologist find another one, the best would be one that is oncology Urologist but see how this goes. I had my first bout with RCC 2002....I filled the toilet with blood but from what I understand that is actually uncommon, most people have just a small amount and it might only be once or twice...Your PCP makes me so angry...but what is done is done and after this is over I would try to find another one for sure. My experience with my PCP's was totally opposite...I called about the blood and was seen that day..before I left I had an appointment the next day to have an IVP ...the radiologist didn't like the results of the IVP so the PCP authorized a sonogram right then...found the mass in left kidney...I can't believe I can't remember the size...I just know it filled my kidney . I was diagnosed on my birthday Nov 23, 2002 and was referred to Washington Hospital Center and I had the very first laprascopic nephrectomy done there on Dec 18, 2002. This time I have been have a horrendous time with my lumbar spine and even though I had text book symptoms for nerve impingement and herniations the only thing that showed up on my myleogram scan was a small herniation at L4...I went to numerous neurosurgeons and none of them would do surgery on me..My Neurologist and my Pain Management Dr were both frustrated beyond belief and so was I. So my neurlogist and I decided as much as we didn't want to we needed to do another myleogram/CT. I had that done the day of Hurricane Sandy...mine was early..they cancelled everyone else. Anytime I see a specialist and they do tests etc. I always request the results also be sent to my PCP. I had just seen on Monday for routine check up stuff and I was leaving on Friday morning for my Cabin in Vermont for 10 days for Thanksgiving. She got the results of the scan on Tues. morning and her secretary called me and told me the Dr said I had to come in in the next few days...so I went that afternoon...she told me all the nasty stuff going on in my spine showed up this time...WOOHOO but then she told me the scan showed what looked like 2 tumors on my right kidney. She said she had a sono set up the next day for me. The sono pretty much confirmed the tumors but they suggested a CT also...the PCP was taking care of setting up the CT while I freaked out in VT. Then on the way home I got extremely sick, after not getting better after a few days at home I went to the Dr. and he sent my to the ER...I had severe Diverticulitis...never had it before and hope to never have it again...the ER Dr had to do a CT to be sure so I told him about the tumors in the Kidney and they checked on that two,,,I was admitted for 4 days. The ER Dr. confirmed that the tumors appeared to be RCC and were small and looked encapsulated.While I was in the hospital I saw a Urologist and as soon as I was released I saw him at his office. Because I only had one kidney he said we had two options, 1 was to watch them closely 2 was surgical removal of the tumors ....he also said he wanted me to get a second opinion...can you believe that...a Dr telling me to do that and he gave me the name of a Dr. at Washington Hospital Center (sadly, my first Dr had passed away). He said this Dr. is one of the top Drs in this field and had done numorous partial nephrectomy's and that whatever he thought was best is what we would do...This Dr. was awesome, and he said surgery..because the tumors 2.1 cm and 2.8 cm were small it would do the least trauma to kidney and it should heal and work perfect..he also said something that made it even easier to say yes to surgery...he said..."just because they are small and appear to be encapsulated now doesn't mean the capsule can't rupture and once that happens it is whole new ball game." I just always assumed that they never ruptured until they were large...so I had a partial nephrectomy robotically on Feb 8 and my kidney function returned to normal almost immediately and I went home Feb 9th...Because even though I am 62 I still think I am wonder woman I tried to do too much to fast and smacked into a wall...I realized I had to rest, rest, rest and I am feeling really good now but I still get tired easy so I rest when I am tired. So if I was you I would insist on the surgery, get them out of there and because of the advances you will probably be able to keep both of your kidneys but life with one is not much different than life with 2. Also I would check out your family history to see if you have a genetic prediposition to this cancer as I do...and my husband;s mother and aunt also had so my kids will need to monitored for it..I wish you the best of luck and you have definitely come to the right place...there are so many knowledgeable, kind and compassionate people here it has given back my faith in the human race...

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

I hear yah on the distrust feelings.  I feel my MD is so afraid I'm going to sue him as he hurried me out last time.  Then I cal l the other day for an appointment and they couldnt find me in the system.  I got so mad I haven't called back.  Need to goto him or another this week.  That aside your situation is same still and u need to get it resolved.  Worry about who shouldve known sooner or later after ur cancer free.  U may consider a second opinion from a doc he didn't suggest if ur still worried.  They all know each other but few will lie for another. However u need to feel safe with whomever cuts on you...

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

Thanks Roaddr23, and flatlander.  Update.  I went to urologist on Friday April 19, and he said it is small and its 1.9 cm not 2cm.  I'm getting MRI on Sunday April 28.  He said it's right in the middle of the kidney next to the main artery and blood vessels and is saying maybe we will watch it for 6 months. He said if they try to take it out I would probably lose the whole kidney and he'd like to keep it.  I saw him for like 4 min. and his physician asst. took over.  I was not happy to say the least!  I asked the physician asst.  about it growing into to artery and veins and he said it would only push not intrude the veins!  I was surprised and discussed what I'd read on this and many other sites and he said don't believe everything you read online.  Not happy to say the least!!  I will go for MRI on the 28th and then for follow up on May 10 with the urologist to see what he says.  Then I will take the films and go for 2nd opinion.  Not really wanting this to grow and create more complications down the road with it possibly growing into the artery or metastasize to anywhere else.  Any input would be greatly appreciated as always!!

 

RichW

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

I think you are doing the right thing. Be patient. 2 and 3 opininons aren't a bad idea. It was my 4th oncologist who knew how to save my life.

todd121
Posts: 496
Joined: Dec 2012

That's utter crap. RCC (if that's what it is), does grow into veins and arteries. That's one of the differences between Stage 1/2 RCC and Stage 3. I have firsthand experience with this. My urologist oncologist diagnosed me with Stage 1 RCC preop (likely RCC). When the pathology report came back (Stage 1 is basically a tumor < 7cm in size, which is fully encapsulated in the kidney, whereas Stage 2 is a larger tumor in that same state) I had Stage 3a, because the tumor had invaded "both macroscopically and microscopically the small veins in the kidney".

If I were you, I wouldn't trust that particular PA again, unless he/she wants to hold your bedpan.

My situation has some similarities to yours. A year ago in December I had some blood in my urine that lasted just one overnight. I asked my oncologist uncle about red urine and what could have caused it (it had gone away) and he couldn't think of anything. (He's a damn good oncologist, by the way.) I sent to see my doc 2-3 weeks later and saw the PA instead for a checkup. The blood was gone (they did a urinalysis) and he couldn't think of anything either. He did some STD tests for me, just in case.

A year later, I had major blood in my urine. Visible for a couple of days. Went to the urgent care. The doctor there was thinking UTI or STD also. We ruled out STD, so she settled on UTI, but wasn't comfortable with that because I had no fever and my blood tests were normal. She put me on an antibiotic and sent my urine in to be cultured. A week later I got a letter from her saying it was not a UTI but to see a urologist ASAP. I was ahead of her, though. I had gotten some pretty severe pain and thought maybe I had a kidney stone, which I had had before. My uncle, the pretty good oncologist, thought maybe that's what it was too. I went to the ER and nearly talked the doc there into my theory. Fortunately he didn't listen to me, and did a CT scan just in case. There they found a 6.8 cm tumor.

So what I guess I'm saying is that this cancer is rare, and doctors don't see it in their practice. Even for an oncologist, it's a pretty rare cancer to deal with. They are used to seeing prostate cancer, and lung cancer, and breast cancer and a bunch of others. It's not generally on their radar.

You have a small tumor. That's good. However, the fact that it is near the blood supply is not good. These tumors generally grow slow, so no need to panic or rush to bad decisions. However, a wait and watch approach with a tumor near your blood supply should only be done with really good advice from a doctor familiar with this kind of cancer. See an experienced urologic oncologist. Maybe a couple of them. See a medical oncologist at some point.

It's hard to avoid the anxiety. I remember it well. The best thing to fight it is knowledge. Have a look at these two websites:

http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/

http://www.kidneycancerinstitute.com/

When you're seeing a doctor (MD, PA, whoever) and you sense you know more about the subject than he/she does, you probably do. Find another one. Quickly. Don't stop until you find someone you are sure knows more about it than you do. I found out that most oncologists/urologic oncologists will try very hard to see you within 48 hours if you're in a situation like you are in. I got my appointment on the Monday before Thanksgiving by calling on the weekend and they agreed to see me that day. My surgeon was the head of urology at University of California Irvine Urology. Don't assume you won't get in with a really good specialist. You just have to tell them what is going on with you. (But these surgeons probably aren't going to spend a lot of time chitchatting with you. Write all your questions down. Take at least 1 person with you when you go to your appointments to help you keep track of what they said).

They couldn't do a partial for me either because my tumor was in the center of my kidney. I'm glad I had the whole kidney removed. I think it was the best course of action. My tumor was found the week before Thanksgiving and I had my kidney removed on December 10th. I'm glad I had it done quickly. There's a big difference in recurrence between Stage 1 and Stage 3. Usually, size would be the main factor. But for you, I think you need to consider the location as well.

Best wishes to you and your family. Please keep us updated.

Todd

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

I really appreciate your input Todd!!  Lots of good information!  I'm going for the MRI on Sunday then I'm making a few calls to Sloan Kettering and cancer centers of America and see someone who is more experienced with RCC.  After all I have read on here I don't believe waiting is a good thing with it being in the location it's in!  I will be looking at those sites tonight.  Thanks a ton and GOD Bless!!

RichW

NanoSecond's picture
NanoSecond
Posts: 507
Joined: Oct 2012

Concentrate on Memorial Sloan Kettering Cancer Center.  They have broad expertise dealing with renal cancer.

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

I contacted my insurance and Sloan is not covered but they gave me some choices and I was hoping you all may be able to steer me in the right direction.  Fox Chase, University of Pennsylvania, Pennsylvania Hospital, Jeanes Hospital.  If anyone is familiar or has some advice i would really appreciate it.  I also messaged my PCP to discuss the removal of the UTI diagnosis letter which really has made me lose trust in him.  Anyway thanks for the advice!!

RichW

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AprilandChuck
Posts: 95
Joined: Feb 2013

Pitt was an option for us..if we needed a second opinion..not because of insurance but because we have family there and they have been doing some pretty interesting research ..look into them.. you may end up liking that option...hugs

I am alive
Posts: 214
Joined: Jul 2012

Rich,

  I recommend Dr. Elizabeth Plimack at Fox Chase. She is young, on top of and involved in RCC research, aggressive (in a very good way), has an impeccable education (I believe she did time at MD Anderson) and was recently named head of her dept. I live outside Philly and my oncologist at Sloan recommended Dr. Plimmack as a local oncologist. When she walked into the room, all smiles, I swear I thought for a moment that she was a college student! I was a nervous wreck and she made me  feel calm and reassured within minutes. She inspires confidence. I like her a lot. 

Jeanes Hospital is a small community hospital attached by an enclosed walkway to Fox Chase. When I spent the night at Fox recently my echocardiogram was performed next door at Jeanes. The hospitals share certain equipment/doctors, but you don't want to go to Jeanes for RCC followup. 

  My nephrectomy was done at the University of Pennsylvania hospial 8 years ago so I'm not up on who is currently a top doc in the oncology department  there. Of course UPenn is a well endowed research hospital. But the experience you  have at UPenn and Fox are different. Fox is a more "valet" experience b/c it caters only to cancer patients. Records and tests are easily accessible and gotten for you. At UPenn I remember my husband and I wandering down confusing corridors until we found the right office to get MRI film which we then had to hand deliver to another department before my appointment there. Of course that was nearly a decade ago so I assume they've streamlined the situation, but who knows. At a big university hospital you're more likely to navigate things on your own. I recently  had to go to the emergency room at Fox and it was a dream - the doctor calls the urgent care department to let them know you are on your way. You are greeted by name when walk in the door and are immediately seen by a doctor who has all your records.

It sounds like I'm pushing Fox. I'm not really. Both facilities are top notch. Each has it's own unique factors. I recommend you audition an oncologist at both places - make meet & greet appointments, check out the docs and the hospitals. Get a feel fthe each place.  Ask about their trials, about how they would follow you up. Your gut will tell you a lot. Good luck!

I am alive
Posts: 214
Joined: Jul 2012

i have done a little research. Dr. Naomi B. Haas at the Abramson Cancer Center at the Hospital of the University of Pennslyvania (referred to above as UPenn) is another highly recommended doc who specializes in RCC. The Abramson Cancer Center wasn't even built when I had my nephrectomy! It's a pretty swank place. All glass and state of the art. Big on research. So wandering down endless corridors without a clue is probably tres passé today. You should definitely hit them up and check it out. Can you see an oncologist before a nephrectomy? I'm not sure, but why not? You have tests to show and talk about. I guess I would veer toward the Big Guys who are in the NFL of kidney cancer. They've seen everything. They do everything. They have amazing resources. Big or small (Fox is small), you owe it to yourself to meet doctors at both places. Time to let the clowns go.

Rich, you have a beautiful family. The picture posted is awesome. Makes me smile. Many blessings to you.

RichW's picture
RichW
Posts: 15
Joined: Apr 2013

I am alive, thank you for the information!  I will try to schedule meeting with both hospitals.  Fox Chase and University of PA hospital. I appreciate your input!!  Thanks so much!  

 

RichW

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