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New here. Can't move on and should I see oncologist?

jillsiek
Posts: 2
Joined: Mar 2013

Hello!  I'm 44 years old.

I was dx. with kidney cancer in December, Christmas day.  I went to hospital for phantom pain in my stomach/inestine.  I thought I had food poisoning or something.  CT scan showed nothing wrong, but a mass on right kidney. 

Jan. 21 I had partial nephrectomy.  Tumor was 2.7 x 2.7 x 4.  Stage 1. 

Pathology came back showing:

stage 1

Grade 2/4

No other organ involvement.

I guess I'm very lucky that it was found so early, but I'm terrified to move on.

The doctor said he "got it all".  I questioned him twice about going to an oncologist.  He said no, I didn't need to, he would follow me closely, with scans. 

I have an appointment at Johns Hopkins (very close to where I live) on Mar. 12, but am wondering if they will look at me like I'm crazy for not letting this go.   I practically begged my surgeon to order a PET scan to see if I had cancer anywhere else.  He said no, it wasn't necessary. 

I am trying to hard to move on and enjoy my life, but I feel like I'm waiting for the other shoe to drop.  How do you move on?

Jill

todd121
Posts: 578
Joined: Dec 2012

I would see one. I would only see one if they had experience with RCC. If nothing else it will give you peace of mind. A second opinion is always a good idea, and I think seeing a non-surgical specialist is a good idea in any case. They have a different focus and experience. Also, you can learn about clinical trials for adjuvant therapy, if you're interested in that. The surgeons don't really follow this type of treatment because it's out of their area of expertise.

You want one in the oncology department with a background in hematology/immunology with experience and interest in RCC. RCC has typically been difficult to treat, so they aren't all over the place. You will have to look for them.

I suggest maybe even starting by searching for post-surgical clinical trials in RCC, finding the doctor managing the trial in your area and seeing them. They are very often RCC specialists.

Todd

HPRonhovde
Posts: 22
Joined: Feb 2013

Jill,

I would certainly find an oncologist.  I was lucky and my oncologist and urologist/surgeon used to have offices in the same building and referred patients  back and forth routinely. I am sure you will find what you need at Johns Hopkins.  If not then ask your family doctor, I've been very lucky in that department.  

I too was given the bad news on Christmas Eve of last year and had surgery only 2 weeks later.  Recovery has been slower than I would like but age and other conditions are the causes there.  I started radiation this week and know that that experience is going to be rough already.  But I will get through it and move on.

Best wishes for a speedy recovery.

Ron 

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Jill,

Being told you have Cancer is enough to scare the sh.. out of anyone. I sure was. Your tumor is about the size mine was. Your chance of it spreading and or recurrance is very, very small. It is a little hard for those of us with small tumors to accept the fact that we were totally cured by the surgery. It has been 10 and 1/2 years for me. Long ago I have accepted the fact that I have been cured. If it dares come back I will put up a big fight.

 

As for seeing the Oncologist if you thing it will help go for it, My personnel feeling is that if you see an Oncologist you will get over these fears in about 2 months. Otherwise it will take 60 days.

 

 

 

Icemantoo

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

I have my radical nephrectomy scheduled for May 14.  Even before it is out, I'm being told by my urologist that it is likely the only treatment I'll need.  I am sure she means well; I am sure she is confident; I am sure she is likely right but . . .

I appreciate you raising this question and I appreciate the responses so far.  The presence of butterflies and anxiety, I would suspect, linger a long time.  Hell, I have them now.  I can only imagine what it will be post operation.

Intellectually I knew that the primary control will be in my hands, but who wants to seem like they don't trust the people whose hands we put our lives, quite literally, in?  Thanks for telling me its okay to challenge and to say, "but are you SURE?"

Mike!

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

It can't hurt (unlike the surgery).  I followed my Dr's advice about not seeing the Oncologist.  My tumor was Tib (5.5x5x5x6), but grade 4 with sarcomitoid differentiation.  In hindsight, the grade 4 should have sent me to a specialist.  

There was a lung met, same pathology that was removed a few weeks ago.  While I am determined to beat the odds, this is the time for me to cross things off my bucket list.

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Jill,

No, I don't think anyone at Johns Hopkins will question your sanity. You've just gotten the scare of your young life and have every right to make sure everything is okay. Even though your doctor recommended against seeing an oncologist, it's your "peace of mind" for which you are  searching, so search away. Is your  appointment ion March 12 with an oncologist or with another doctor?

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

Even if someone tells you it's not necessary, do what makes you comfortable.

For me, it was a relief to connect to other people here on this board that are experiencing the same thing as I am.  Reading about other people's stories and knowing that there are others that have worse cases than mine, but are doing fine put my mind at ease.

 

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Is it just me, or are we seeing more and more of stories like Jill's every day? "Got it all, no further treatment, no oncologist required"... These are all comments that I can't help but be alarmed by. I was in that boat too, and if sat back and did what I was told I would be having a six monthly ultrasound and blood tests and an appt with my urologist for one year as follow up for T3a RCC! I'm actually still waiting for my 6 mth urology appt and it's going on 9 mths since surgery!  

Instead i researched. I disagreed. i was the annoying and assertive patient. i even had to stage myself when my urologist said he didnt know what stage my cancer was. Now i have a great medical team including an oncologist. i hace regular chest xrays and CT scans as welll as blood tests. I am taking sorafenib in an adjuvant setting.

What scares me most about this is the thought of how many people are out there who haven't got access to support groups like this. Or who are too scared to ask questions or stand up when they think their doctor is giving wrong advice. I read earlier that kidney cancer can be a chronic illness, rather than a death wish. I fear for some that they might not get that opportunity to treat RCC as a chronic illness. Without proper and vigilant care taken, this disease can easily go undetected until it is too late. Pull your socks up doctors. 

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

No Hanno, it is not just you.  Your comments were spot on.  The question still is - how to get those folks who don't know what we now know?

Many thanks for putting your thoughts and observations down in print.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

This whole subject is so frightening to me; I find myself pushing it from my mind more than I probably should. It bothers me to think of the number of people given a diagnosis of advanced stage cancer (not talking about Jill here) and told that there is nothing that can be done. Are there enough specialized RCC oncologists out there to serve RCC patients? I'm asking; I don't know. To me it appears it has become increasingly specialized (with all the new treatments) but the number of specialized oncologists do not appear to be growing with it.

A year or so ago I recall reading something/somewhere that 25% of advanced RCC patients do not pursue treatment. Is that for lack of insurance? lack of knowledge? lack of accessibility? I know how fortunate John and I are to be so close to Hopkins and to have contacts that expedited his being seen by a great oncologist. But I worry about other people given a dismal diagnosis (as many of you have received) without any knowledge of where to turn next. 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

There are other reasons, which may impact more people than you think.  Other health issues.  My father can not tolerate the treatment right now.  His medical condition is too unstable.  He also has quality of life issues.  He knows the down side risks...but with the rate the disease is progressing, odds are something else will get him first.  If he were to get any treatment, it is possible he would not survive.

My RCC is more advanced and more agressive than my fathers.  At the moment, my treatment is surgery as things pop up.  Why?  At the moment, while I have msRCC, there are no known tumors.  And, the best treamtments for sarcomitoid tumors is to cut them out. I am seeing a team of physicians at NIH for these issues.

Active survalience is a form of treatment.  No treatment would be no scans, no dr's.

todd121
Posts: 578
Joined: Dec 2012

I had the same experience. But I had an advantage in that my uncle, a retired medical oncologist, was talking to me daily and when the urologist said something that wasn't right he said, "Well I'm not so sure about that. Here, read this article. You should research this other thing." and sometimes, "Surgeons are like that...." and "it's not going to be his problem, so he's not that worried about it." All practical advice. At every step of the way, my surgeon/urologic oncologist was more optimistic than what any of the medical oncologists were. I believe it's an approach that surgeons are taught. I can see the practicality of their attitude. Who, after all, wants someone cutting on them if the person doing the cutting is pessimistic and not sure of themself?

So I read and pushed. I had to push to see a medical oncologist. For some reason, my urologic oncologist was fine with me seeing a nephrologist, but wasn't very interested in me seeing a medical oncologist. He wanted me to be followed by his urology department. So I made my own appointment (I'm also fortunate to have a medical plan that doesn't need referrals to see specialists, so I didn't need to get his approval.)

My first medical oncologist also was too optimistic. He was inexperienced, just out of his fellowship training and not an RCC expert. Then I saw 2 RCC experts and got a dose of reality/truth to my situation. T3, close to a 50% chance of it coming back. For me, way too high to ignore. I'm a guy that plays roulette. I've lost plenty of times betting red or even, or even on the lower 1/3! And I think, what were the odds of me getting this in the first place? Miniscule! And now I have a 40-50% chance of it coming back. I have to do something if I can. I'd like to be around if my son and daughter-in-law ever get around to having that child.

I'm reading Keith Block's book, "Life Over Cancer" now. (Thanks TW and Neil for recommending it). That's exactly what he says about cancer- that it is a chronic condition and requires changes in lifestyle to manage. He says that the situation that encouraged the tumor in the first place needs to be modified, so he calls for changes in lifestyle (nutrition, exercise, anti-stress activities) along with medical treatment. I'm starting to think about visiting that center for an analysis, because my current oncologist is very much against me taking supplements, but I think I may need to because taking everolimus for a year is going to have a big effect on my immune system and I think I should be doing more nutrition-wise to address it.

Todd

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Hi Todd,

I am very pleased to hear that you are finding Dr. Block's approach helpful and inspiring.  It was that way for me and my wife.  So much so that we eventually did visit his facility for a consultation. I am extremely pleased that we did.  I still rely on my local oncologist (who, incidentally, was the first to even mention Block to me - even though he had never read his book or even knew how to properly spell his name).  Note that Dr. Block will work in tandem with your own local oncologist (assuming he/she does not feel threatened by his approach).

It is very sad and depressing (to me) to discover so many "expert" oncologists (and they truly are experts - but only in their particular area of expertise) who either dismiss or marginalize the importance of nutrition and diet. The taking of supplements is just one small part in addressing the role of proper nutriton.  To maintain proper nutrition - first and foremost - you must begin with the diet. Supplements are secondary. So, for that oncologist who forbids you to take any supplements (doing so without knowing which ones they might even be or the rationale for taking them) - what is he/she going to say next? We he forbid you to eat all those nutritious foods that contain the exact same nutrients that are (concentrated) in those supplements?  That makes very little sense if you understand the rationale for each supplement taken.

Now there are some very valid objections to taking supplements.  First and foremost is to ensure that they do not interfere with the metabolism of the TKI or other targeted therapy that you might be ingesting.  Another is the lack of rigorous clinical trials to "prove" the efficacy of a given supplement. Another is making sure that the supplement actually contains (and only contains) what it is supposed to.  I am sure you can think of many others as well.

However, all of these objections can be dealt with appropriately under proper guidance.  But to simply dismiss them outright and without considering any of the science and/or rationale behind each of them is unfair, unnecessary, and certainly counter-productive.

I am extremely fortunate to have as my primary oncologist someone who is not only open to learning about nutrition, diet, etc. and what role it can play to help his patients - but also one who keeps encouraging me to go even further along this path and do more research.  Why? Because he is absolutely convinced that this approach has got to become a part of the future of mainstream cancer treatment.

To me he is the best kind of expert.

todd121
Posts: 578
Joined: Dec 2012

Thanks Neil. You raise some interesting points about the supplements. I asked my uncle about Dr. Block, and he wasn't familiar with him. However, when I mentioned the co-author of his book (Andrew Weil), he was excitedly negative saying he's heard him speak and find that he spouts many things that have no scientific basis, and that the guy is more of a showman than anything (he likened him to Dr. Phil). I noticed Dr. Weil's name is mentioned as co-author on many of these "integrative" approaches. So much so, that it almost seems like you must have his name on them to sell the book.

Regarding supplements, my uncle had this to say, " Thanks to Sen. Hatch, that industry has been completely unregulated since 1996 when Hatch pushed through the Vitamin and Supplement Act which prevents any type of safety and efficacy oversight of the industry. There is no way of knowing what is actually in most supplements because the makers aren't required to disclose it. Some of the ingredients come from places that have little or no quality control or sanitation. " He urged me to be careful moving forward on using them, because of this.

How do you make sure you're getting what you pay for, and that what they are providing is safe/clean?

The medication I'm on can increase lipid and glucose levels in the blood. I'm hoping after we have a few weeks of data with me taking no supplements, that he'll be ok with me adding some back in, then we'll be able to tell if any changes are the supplements or the medication. I get my blood tested every 6 weeks, and he has no data yet, so I'm thinking he was concerned about being clear what was causing what. I wanted to take a low-dose aspirin, for example, but the drug I'm on can also cause bleeding issues (low platelets), so that's probably the reason he suggested I don't take it for now. I suppose he may just be trying to simplify things with regards to my blood test results and any decisions he has to make should something go wrong. Fewer variables to consider? I'll talk to him again once I'm clear I want to be taking something and why.

Todd

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Todd,

Andrew Weil is NOT a co-author of this book. He just wrote the (short) forward to it.

I certainly don't have much regard for him either.  But his many faults should have nothing to do with deciding on the merits or demerits of what Dr. Block has written or might espouse.  I can only urge you to keep an open mind (which seems to be somewhat lacking in this case with your relative) and then please judge for yourself.  Do not succumb to ad hominem attacks that paint Block (or anyone else) as to be avoided a priori simply because he asked a better known "celebrity" then himself to write the forward to his book.  That is just called good (or bad, depending on your view) marketing.

Your uncle's points about the safety of supplements are completely well founded.  But so are more serious concerns about certain FDA certified and "closely" supervised drug-compounding companies.  I do hope you get my drift?  There are always bad guys and there are some real good guys.  Again, there are no grounds here to throw the baby out with the bathwater.  Just caveat emptor.

There are many reputable companies that do attempt to maintain the quality and integrity of their products - no matter what "loopholes" Senator Hatch might have given them.

Finally, no matter what, in the end, you must work together and in full agreement with your oncologist.  I think his concerns are fully justified.  It certainly makes it harder for you though to convince someone who will not even consider the value of proper nutrition.  Ironically, a very big part of proper nutrition is to consider ways to control your blood glucose, insulin levels, TAG (Triglycerides), lipoproteins, cholesterol, etc., etc. - only to do so without the use of man-made drugs - almost all of which can bring even additional unwanted side effects.

It is a shame the burden for all this knowledge presently falls on the patients (if they are even motivated to find it out in the first place).  It should not be this way.  It does not have to be this way. It is rather strange that we still put up with it.

todd121
Posts: 578
Joined: Dec 2012

Neil,

I'm with you on the good nutrition and I'm enjoying Dr. Block's book. My uncle is extremely fair minded and wasn't discouraging about seeing what Dr. Block had to say. I had seen Andrew Weil's name on the cover and supposed they were co-authors. I didn't look that closely. The thing my uncle insists on with everyone is that they have studies and data to back up their opinions. He's not just a doctor, but a real scientist. But also very fair. I'm sure he was a really good doctor. He retired 7 years ago. He was one of those doctors that patients flock to because he works so hard and works for his patients. He could never say no to a patient that was sick and wanted his advice, and because of that he worked long, hard hours and could never successfully cut back his practice.

He also is a huge critic of the current state of our medical care system and of issues with big pharma companies. I think all of this is part of the reason he retired young as well (he was only 55 when he retired).

He also mentioned feeling bad for some patients that travelled for alternative treatments and spent a lot of money, and ended up back home very sick and also broke.

Well, as I learn more, I'll be deciding what I eat (including supplements). I want to see the results of my first blood tests. These will be only with a decent diet and no supplements (and this drug). That should help me decide what I might need to take/eat.

I have been doing pretty well with my diet. I've lost 15 pounds since my tumor was found, and most of that is due to diet.

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Hi Todd,

I apologize for assuming your uncle was just being close minded and unfair. It sounds to me like if he actually reads Dr. Block's book he will be pleasantly surprised. Everything Block advocates is supported by peer-reviewed research wherever possible.  But do keep in mind that the book is was published in 2009 - which to me is a lifetime ago. There have been many new and significant breakthroughs along with new evidence since its publication that I wish he could have included.

For example, Block still perpetuates highly flawed and suspect (actually doctored) nutritional advice that comes from Ancel Keys. This is the current "common knowlege" that demonizes saturated fats and then substitutes them with poly un-saturated vegatable oils, etc.  The same flawed research that claimed that lowering your cholesterol decreases your risk of cardiovascular disease.  Sorry, it ain't quite that simple. Plus, the mad rush to lower the fats in our diet that resulted after Keys won the debate with John Yudkin (who always maintained it was the sugar that was the major culprit) has led to our current epidemic of obesity, type II diabetes, metabolic syndrome, etc.

I suppose a big problem with the book is that Block does not footnote his sources. That is most unfortunate if you want to dig deeper into the original research behind many of his concepts.  However, that does not mean the research does not exist.

Anyway, it is good to be cautious and I applaud your uncle's skeptical outlook.  As long as he (and you) approach these topics with an open mind you eventually will arrive at the truth - and a practical path to follow. It is most unfortunate that some of these issues of proper nutrition have been unfairly associated with many "quack" therapies in the past.  I don't blame your uncle for assuming that Block might be another example of that.

But he isn't.  And the science of nutrition should not be allowed to languish at the "fringe" of mainstream medicine any longer.  Block should not be tarred and feathered for attempting to bring it back into the forefront where it has always belonged.

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

Neil, are you not doing one of our main gurus a disservice?

"I suppose a big problem with the book is that Block does not footnote his sources. That is most unfortunate if you want to dig deeper into the original research behind many of his concepts.  However, that does not mean the research does not exist."

Perhaps you're overlooking the profound significance of his web-site, where, among MANY other things he gives reams of references - relegating the citations there from the book (which might otherwise have been many thousands of pages rather than a mere 500 odd).  He also updates his approach with the latest scientific evidence.

See page 47-8 where he says:

"The Life Over Cancer website is an integral part of this book. I and my colleagues have chosen this method to provide documentation and resources because of the speed with which new information on cancer treatment is emerging."

 

I'm rather busy just now but want to discuss Ancel Keys, John Yudkin and others with you soon, as well as raw food diets, Paleo, ketogenic, Hay, Atkins, d'Adamo etc.  I think it's all too black and white a debate and several babies are at risk of disposal along with the bathwater.

(I've been interested in nutrition for so long that "Pure, white and deadly" feels to be a relatively recent introduction - a shock to find it was 40-odd years ago - explains why I don't know where my copy is!)

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Busted.

You are quite right Tex.  I was only addressing Todd's comments about the book.  Of course I should have pointed out the terrific website. And I should have said that I agreed with Block's not putting in all the footnotes - for fear of distracting the reader.  But, as I said, the research is all there.

Like you I have been so busy sometimes I forget to step back and look at the bigger picture.

I absolutely believe the debate about Keys and Yudkin, et. al can be made to look too black and white. So I really look forward to that discussion with you (and others).

Guess what? I am about to head across the Potomac River to listen to a free lecture being given by our favorite skeptic, Dr. David Gorski.  I am looking to meeting him.

It's also turning out to be a gorgeous day for golf around here.  Tomorrow's forecast is even better.

 

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

Lucky you - I can't wait for your thoughts on the talk and your impression of the man.

I't just above freezing here, overcast and windy and my Wife has declined going our for a walk - probably a sensible decision.  I'm due to play a match tomorrow. early but we could get snow before then  :(

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

As most here know somehow I somehow have been blessed to both times come out clean after surgery...but from the very beginning my surgeon was my surgeon and my oncologist was my go to follow-up guy...My Dad lived 5 minutes from a fairly big hospital but I drove him 1/2 hour down to my Oncologist because I didn't want anyone else caring for him...This time around as soon as I knew about the the results of my Lumbar scan that showed two possible lesions I called him..he told me to keep him updated..and when I was admitted to the hospital for the Diverticulitis the beginning (My CT Scan was scheduled for later that week)..and they did a CT in the ER and confirmed the tumors..I called him the next morning and that afternoon he was right there in my room with him (This hospital has gone to using hospitalists like so many now and if you don't tell your Dr. they don't even know you were in the hospital) But I know from past experience that my Oncologist always checks on his patients and he is kind and caring but also honest to a T and that is important and makes sure you follow up..I always do but I know from others that reminders are sent...you have STAT bloodwork done an hour before your appt...CT scans and Chest Xrays...and he would rather you call and come see him if something freaks you out and you think it might be cancer (as I did a few times). We would have found my tumors..I was scheduled for a check up and a CT it would have just been another month and a half...Both my surgeons were wonderful..knowledgeable and skilled but to me that is their job..when they are done you must follow up with an Oncologist...again, just my opinion

One other thing I always do is whenever I go to my Primary Care Dr for anything I always ask them to do a quick Urine dip for blood...my Dr never has a problem with that...I don't know if others would or not but we just routinely do it..

Digger95
Posts: 59
Joined: Jun 2010

I'm now twelve years out from RCC and radical nephrectomy and I've never seen an oncologist.  However, you need to do what feels right for your own situation.  I had an expert nephrologist who said he 'got all of it' with the surgery and everything he told me from the beginning has been true, so I've simply not seen the need to see an oncologist.  But more important than that, you need to feel comfortable that you are receiving the best possible care, and if seeing an oncologist provides that for you, then that is the route that you should take.  I can also tell you that the moment a blip appears on the screen I will haul my butt to an oncologist post-haste.  Thankfully though that has not been the case.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Alice,

 

I don't know for certain, but I think there aren't that many RCC specialists.  When I was at NIH, I asked if they knew of one in the Atlanta area and the doctor I saw said he had asked other doctors there for me and they said there were not any they had worked with so I asked if they even knew of any even if they had not worked with them anywhere near Georgia.  He left the room and asked a doctor he thought was sure to know and came back and said that the closest ones they were aware of were at Duke, but had not actually worked with them.  I am surprised that there aren't any in a city the size of Atlanta, but apparently not.  I would think NIH would be aware if there were, but maybe I'm wrong.  Maybe RCC specialists don't communicate with others outside their own institution that much. I will probably be looking for a new oncologist because I had hoped that after telling mine I had a very rare type he never heard of that he would at least take the interest to read something about it before I saw him the next time, but I guess he wasn't that interested. Maybe that is expecting too much of a busy doctor. There is a young oncologist at Emory that was trained at MD Anderson, but I don't know that I want to assume that being trained there makes you an expert.  I would rather have someone with several years of experience behind him and I haven't heard anyone on the boards mention having experience with him.  I do not know for sure what type of RCC I did have because I do not have a report from NIH yet.  If it turns out to be a very aggressive type or my cancer returns, I will probably make the trip to Duke or somewhere, at least for consultations.

I don't know why some with advanced RCC don't get treatment except that maybe they google enough to see that chemotherapy and radiation don't work on kidney cancer or they look at gloom and doom statistics and think it's a death sentence.  Then I think there are a lot of people with no insurance or they don't have the means to cover the deductible and coinsurance.  Someone on $30k salary with 3 kids can't cover a $4k deductible + 20% coinsurance every year not to mention the expense of traveling somewhere to get treatment.  I am extremely blessed to have my job and it's benefits.  I can't imagine how my sisters on very modest salaries could do it if they didn't have family members to help out.  If I should get laid off, which is a very real concern, I don't know what I would do.  I may not even be able to get insurance any more.  I hope I don't have to cross that bridge.

Kathy

 

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

Cancer is scary and you need to be comfotable that what you were told is correct.. so you can move on.. go see an Oncologist.. no one is going to think you are crazy.. I promise!! Hope Everything Works Out for you please keep us posted!! Hugggssssss

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

I live in Calvert County so we aren't to far apart..I would be glad to talk with you anytime if you need too..As most of my buddies here know this is my 2nd go around with RCC. The first time was in 2002 and I since I am an old mucket (62) I can't remember anything about the specific size of my tumor in the left kidney..I just know it basically filled it up but thank goodness it was incapsulated and I had my left kidney removed and was good to go. With this first instance I found it because I peed a bucket of blood in the toilet (one day and never again until it was removed) Yes, it is also scary to hear they got it all because we were so terrified until after the surgery...kind of like this huge all consuming thing that takes over your life and thoughts every minute until it is removed and then it is like...joyfully happy but oh...you had cancer but no big deal all is good now...and then you crash...and think what the hell just happened...it takes adjusting but it will get better...Yes, you need to see an oncologist for sure...I was checked every three months, then 6 months then yearly but it was with an oncologist that specialized in Hematology and works in syn with Urology Onc. etc...It took me a long time to come to grips with it and realize that even though I didn't have to go through Chemo, Radiation etc. I was still a bonified Cancer Survivor...I will tell you that everyday and everytime I pee I can't help but check the toilet for blood and I always will. I also asked my oncologist about things meds etc that I should avoid if possible..the only I take for pain is Tylenol...Get yourself a second opinion for your peace of mind with an oncologist and then work each day toward believing you had cancer, you were extremely lucky and use that knowledge to make you love life and live it even better than you did before...So, now we go to round two for me...I am a retired PG County Paramedic and have been have lots of back problems for the past 3 years, numb legs, leg and feet cramps, pain when walking etc. and have been trying to get someone to understand that just because I only appear to have one small lumbar herniation my symptoms are classic for something worse...so my Neurologist and I decided I needed to have a new spinal tap/myleogram done and only I could manage to schedule for the morning Hurricane Sandy hit..luckily they did mine before they cancelled the others...anyway., long story short...found all the nasty stuff in my spine perfectly this time...lit up like a Christmas tree but.....so did the 2 possible tumors in my right and now only kidney...and on the CT they looked like a duck, walked like a duck and the Drs were 99% sure they were RCC....Feb 8 had a partial nephrectomy with the Da Vinci method...got out of hospital Feb 9....taking a little longer to recover because of my age and other medical things but my pathology reads like your Stage 1 2.1cm and 2.8cm Clear Cell RCC all margins are clear...no evidence of any further cancer or mets...So I think my awesome Dr and staff at Washington Hospital Center and head home....I cannot believe that I have beaten this monster twice but as my friends here will tell I did have a wee bout with survivor guilt because so many of them are not as lucky as you and I have been but I also believe that this happened for a reason. I am a person who believes there are no coincidences in life....I was a totally obnoxious patient about my back surgery every time I was turned down..my neurologist and pain management Drs. were both PO's that no one would do the surgery they knew I needed...but you know what...I will God but it can be whatever anyone wants to call it....he has a plan for my life...and this is part of the plan and I can tell you right now as I have told all here...I am going to do my best to be the "Katie Couric" of Kidney Cancer...we need to get the info out there so more people can find it early and be lucky and get a 2nd and third chance at life like me....And now that I know how close you leave you and Nano might have to become my wingmen(woman)...We all need to live like we are dying...sadly some of us are but those of us with another chance need to live it for them!!!

 BTW, I now know why GOD kept all those Drs from doing my surgery...If I had it 3 years ago I would not have needed this new myleogram and would not have know I had RCC again until it might have been to late....the plan is the plan is the plan...that is my Mantra

justsayin's picture
justsayin
Posts: 15
Joined: Mar 2013

Hi Jill,

I was diagnosed in 2010 with kidney cancer. I had my right kidney removed and was told the same thing, no need for oncologist, the cancer was in the kidney and the kidney was removed.  I was very nervous and had the scans done anyway (at the request of my regular doctor) - everything came back fine and my peace of mind was better.   Then in January of this year, there was blood in my urine.  I was devastated, had another scan and was given good news/bad news.   The good news was that my remaining kidney was fine, the bad news was I had bladder cancer.  I have had five tumors removed and will be tested every three months for two years, then every six months for three years then every year for the rest of my life.   The doctor said the bladder cancer had nothing to do with the kidney cancer and I almost wish it did because now I'm left wondering what next??

So to answer your question, get the scans - you will feel better and have a baseline for the rest of your body.

 

augello55
Posts: 12
Joined: Mar 2013

justsayin....my bladder did some type of test on my bladder before I had surgery ....he told me he needed to look inside my bladder for tumors he said everything looked great.  so I am wondering if you had any type of test done on your bladder prior to surgery.  I am not sure if that is a standard procedure or if he did it because that was the only symptom that I had that led to an ultra sound that led to the discovery of RCC  (i had a hysterectomy about 6 weeks, and one day (and only that day) there was blood in my urine and i called the dr.   she thought maybe uti but when that came back clear she sent me for ultrasound (afraid she had caught a suture in my bladder) 

my urologist told me that I will have blood work  scans and chest xray every 3 months for the next yr  every 6 months after that

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