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

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 said:

By all means see who ever can help you feel better

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 

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

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.

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 said:

Is it just me, or are we

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. 

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 said:

I agree too!

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. 

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 said:

Ditto

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

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.

NanoSecond said:

Life Over Cancer

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.

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

Digger95 said:

Do what puts you most at ease...

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.

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

todd121 said:

Dr. Block

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.

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.