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Aleeka

Hi - I came across this forum while google searching for information on 'suspicious' nodules. 

But let me back up a bit. July 17, 2013 I had a radical right nephrecomy in which a HUGE Renal Cell Carcinoma, Clear Cell was removed along with my kidney. I have a copy of the pathology report - it had over 30% central necrosis (my immune system was already working to kick its butt for years). The tumor itself was 14cmx22cm. The sample size they removed was 22cmx17x12 - something vagely huge sweet potato shaped and weighed in at over 3lbs. It was one of the largest tumors my doctor had ever seen or removed - and he's the best in this area. 

No positive margins. No sign of cancer in the veins or surrounding tissue. Tumor completely encapuslated. For those who understand the pathology code: pT2b NX MX. 

Strictly speaking - if it only grew the 3mm 'average' yearly, I'd had it my whole life - 40 years. My doc thinks minimum 20 maybe even 30 years. There's some comfort in that.

I've had chest xray and blood work in Feb. All Clear.

On Friday morning I just had my 1 year xray and ct scan combo with barium smoothie and intravenus contrast. My kidney doc - who's a busy busy guy - called me at 530pm on Friday. It is never a good thing when they call you same day.

Apparently I have two 'suspicious' nodules where my kidney and tumor used to live. 
I feel like I've been kicked in the gut. My doc has to talk to the radiologist this week and then he'll call me about getting an MRI - perhaps in 3 months if not sooner. We're going to 'track' it. *ugh*

I've decided to name the nodules "self doubt" and "death wish" so I could work on banishing them through living extremely well and continuing to take care of myself emotionally and physically. I have an interview for graduate school on Thursday, I'm moving on with my life. This cancer thing - surgery and recovery- took months. Nearly 6 hours of anestheisa for my surgery left me feeling depressed and 'dumb' for 7 months - I couldn't even read a book because I'd forget what I read. I don't want to go through even a fraction of that again. I feel BETTER today than I've felt since I was 20! I've taken up running for the first time in my adult life. I can't imagine going back. I won't go back.

Has anyone had suspicious nodules post surgery that turned out to be nothing? That cleared up on their own? Has anyone used alternative treatments (such as juicing cannabis, just plain vegetable jucing, or acupuncture)? I live in Oregon where medicinal cannibis is legal - so I'm considering jucing (as I don't like being "high" - I don't even drink alcohol). Some people I know have talked about the Rick Simpson oil - but again - I don't like feeling 'high' and I need to function!

I already am into vegetable juicing as I need to take off some extra pounds. I read a recent study that basically says the surivial rate for people who are overweight with my type of cancer is 64% after 5 years. I think I'd rather be in the 87-97% category, so off the weight comes. They guessed it was the hormonal action of the fat that was causing the metastisis. So far I'm down 50lbs since January and have maintained the weightloss between juice fasting by eating a 95% vegan diet. I read a lot of peer-reviewed literature and studies - not popular articles but the actual science articles.

Anyway - I'd love to hear the input from anyone who's had suspicious nodes despite a 'good' prognosis and what/if anything they turned out to be and how you dealt with them. I'd also love to hear from anyone using alternative treatments to bolster their immune system/ loose weight. 

Thanks so much! Happy healing to all - Aleeka

GSRon

Hi Aleeka..  Time to wait and

Hi Aleeka..  Time to wait and see.  Nothing you can do can change the outcome at this point. IF those two spots are RCC then they are treatable.  First of all, stop reading about miracle cures or alternative treatments, they are bogus from people with their own agenda.  And as far as weight goes.. depends on how much you need to lose.  The experts say that obesity slightly raises the risk of getting Cancer, but being slighlty overweight actually improves the outcome for Metatastic Cancer.  This is because many of the treatment drugs often cause severe weight loss leading to major anorexic related health issues.

Try to remain calm.. and do the follow ups..! There are many living well with Mets...

Good Luck,

Ron

NanoSecond

Aleeka.  Sorry to hear what

Aleeka.  Sorry to hear what you are going through.

A couple of thoughts.  First, necrosis in the interior of a tumor may mean that the tumor had turned aggressive and was now "growing too fast" - outstripping its ability to get nutrients into its interior.  Sorry to have to point that out - but I am surprised your doc did not mention that likelyhood.

Second - "correlation is not causation".  Be very careful in assuming that just because you reach (or are at) a particular weight you will somehow magically lessen your risk.  That is not how it works.

However, it certainly is worthwhile to pay attention to your diet. To be honest, a vegan diet most likely will help you lose some weight in the short term but it is NOT healthy in the long term.  In fact, after doing months of painstaking research, my conclusion is that the "best" diet for cancer patients is to follow a low carbohydrate/high fat diet.  This diet will also allow you to lose weight almost effortlessly.

Most vegan diets (unless you know exactly what you are doing) end up increasing your intake of various sugars and unhealthy carbohydrates.  This is the real danger.  Excess sugar/carbs can cause your insulin levels to spike up.  When that happens, other hormones such as IGF-1 (Insulin Growth Factor-1) also spike up.  Both of these hormones can feed tumor progression.  At the same time, other hormones, those which suppress tumor growth, can diminish.  It's a double-whammy.

I have prepared a 65-page document which explains the science and rationale behind following a low carb/high fat diet and why I believe it is optimum for cancer sufferers or those wishing to avoid cancer in the first place.  It's free if you are interested.  But I need to send it via email (it's a .pdf file).  So, if you are interested, just send me a private message with your email addresss and I will respond with it attached.

Best wishes,

-Neil (NanoSecond)

Laura76

Best of wishes to you. Love

Best of wishes to you. Love your positive attitude

 

You made me giggle! I think you'll be just fine

GSRon

Laura76 said:

Best of wishes to you. Love

Best of wishes to you. Love your positive attitude

 

You made me giggle! I think you'll be just fine

Longer reply

Aleeka.. ok, now that I am on my laptop and not my cell phone I can elaborate a bit.  First all those statistics are old and outdated.  We have a much larger "arsenal" of new treatments since then.  Drugs like Votrient and Inlyta were not approved then, plus there is Cabo that can be had off label sometimes and all the new clinical trials that have had some good success.  Percentages are not people as well... does not matter what those numbers are, what matters is which side of the coin you are on.. and nothing known at this point can change that.

On diets, Neil has some awesome info.. but..  as we are all individuals, any diet should consider YOU and your specific needs.  What do your blood tests indicate..?  Are you anemic..?  Or in my case I have too much iron in my blood, thus foods like spinach could cause great harm, including heart attack, stroke, blood clots and worse..  Get copies of all your test reports and scans.  I suggest you chart out your blood tests (my hospital does that for me on line), and look for areas out of range or are headed towards being out of range either high or low.  These are good indicators.

Kidney friendly diet..  I elminated sodas and substitute water.. water is your best friend.  Some foods that are OK for the average person may not be good for you...   Most vitamins get excreted out if you have too much of them, but not all... over doing it is a waste and can be harmful.   This can be even more important for those of us on some of the treatments,   The doctors sometimes forget to caution patients that some normally healthy foods can cause a negative reaction to some of the drugs.  Patients need to ask questions and be aware.  Read up on any drug for those interactions.

I will close with repeating what I said about weight.. a bit extra tends to extend life for those of us with Metastic disease.  On the one drug, I was losing about 14 pounds a month.  It would not take long before I went from slightly overweight to skin and bones and waste away.  This is a big concern for many of us.

Somehow, try not to stress over it all..  many of us are living with our Cancer..

Ron

todd121

Growth Rate of RCC, etc.

Hi and welcome.

Just wanted to quickly make a not about how long your tumor has been around. Of course there's no way to know, but I doubt you've had this your whole life or the tumor grew that slow.

These tumors grow slow, but not that slow. 3mm per year is not the average. The average is about 8 mm per year with the range being 1 to 30 mm.

Check out these two sources:

http://www.ncbi.nlm.nih.gov/pubmed/22105897

http://www.kidneycancerinstitute.com/active-surveillance.html

Also, the above study showed that the growth rate was higher with larger tumors, so the growth rate isn't uniform over time.

With a tumor that large you probably have had it for years. That's for sure true.

Glad you've got an all clear now. That's great news! Sorry about the nodules. However, those of us that have this really have to learn to live in the unknown. I hope they turn out to be nothing but nodules.

I don't believe in alternative treatments. I talked extensively to my oncologist uncle about these things, and if they worked, they'd be using them. Some can actually harm you (besides wasting your money). I take supplements, but only the ones that blood tests have shown me to be difficient in (for example, vitamin D, vitamin B12).

I'd like to see that study you quoted about the weight. I've never seen a study that coorelated weight with survival (even the ones that coorelate tumor stage/grade to survival have some controversy behind them, because there are so many new drugs being used now in addition to better surgical/radiological intervention and better imaging). In fact, I've never even seen the studies that show clear connection between obesity and this cancer. There are plenty of thin, healthy people on this board, for example, that have had this cancer. Of course, losing weight is good for your health. In particular, it's great for your immune system and your circulation, and helps your kidneys by helping keep your blood pressure low.

I'm not sure I understand why you're being followed with an MRI? Most of us get CT scans with/without contrast to follow us and check for RCC. I think there's a reason for that...I wish I could remember what it is. Neil has explained it on here more than once.

Great post. Thanks for posting.

Best wishes,

Todd

NanoSecond

todd121 said:

Growth Rate of RCC, etc.

Hi and welcome.

Just wanted to quickly make a not about how long your tumor has been around. Of course there's no way to know, but I doubt you've had this your whole life or the tumor grew that slow.

These tumors grow slow, but not that slow. 3mm per year is not the average. The average is about 8 mm per year with the range being 1 to 30 mm.

Check out these two sources:

http://www.ncbi.nlm.nih.gov/pubmed/22105897

http://www.kidneycancerinstitute.com/active-surveillance.html

Also, the above study showed that the growth rate was higher with larger tumors, so the growth rate isn't uniform over time.

With a tumor that large you probably have had it for years. That's for sure true.

Glad you've got an all clear now. That's great news! Sorry about the nodules. However, those of us that have this really have to learn to live in the unknown. I hope they turn out to be nothing but nodules.

I don't believe in alternative treatments. I talked extensively to my oncologist uncle about these things, and if they worked, they'd be using them. Some can actually harm you (besides wasting your money). I take supplements, but only the ones that blood tests have shown me to be difficient in (for example, vitamin D, vitamin B12).

I'd like to see that study you quoted about the weight. I've never seen a study that coorelated weight with survival (even the ones that coorelate tumor stage/grade to survival have some controversy behind them, because there are so many new drugs being used now in addition to better surgical/radiological intervention and better imaging). In fact, I've never even seen the studies that show clear connection between obesity and this cancer. There are plenty of thin, healthy people on this board, for example, that have had this cancer. Of course, losing weight is good for your health. In particular, it's great for your immune system and your circulation, and helps your kidneys by helping keep your blood pressure low.

I'm not sure I understand why you're being followed with an MRI? Most of us get CT scans with/without contrast to follow us and check for RCC. I think there's a reason for that...I wish I could remember what it is. Neil has explained it on here more than once.

Great post. Thanks for posting.

Best wishes,

Todd

2 clarifications

Hi Todd.  My explanations were about the issues with PET scans vs. CT-scans, not MRI's.

In regards to your statement about obesity and cancer:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61172-7/fulltext

But always keep in mind that "correlation is not causation".  Regardless, there is ongoing and significant research that obesity is a high risk factor for the development of several kinds of cancer.

todd121

NanoSecond said:

2 clarifications

Hi Todd.  My explanations were about the issues with PET scans vs. CT-scans, not MRI's.

In regards to your statement about obesity and cancer:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61172-7/fulltext

But always keep in mind that "correlation is not causation".  Regardless, there is ongoing and significant research that obesity is a high risk factor for the development of several kinds of cancer.

MRI vs CT

Thanks Neil. I remember now.

So why are we getting so many CT scans and so few MRI's? Is it just that CT scans are cheaper and more available and just as good generally so that's the go-to for the docs?

I'm concerned about having so many CT scans because of radiation exposure. I'd much rather have an MRI if it's as good. I've had tons of CT scans this past 2 years (and a few MRIs). I'm starting to keep a list, because I've noticed they aren't really tracking it. Each doctor makes a decision based on this one CT scan, without weighing the total radiation exposure you are receiving.

I've noticed more docs have X-ray machines in their offices. I visited my ENT recently, and he snapped an X-ray of my sinuses when I really didn't need it. I argued with him a little, but he pushed back, promising to give me a lead apron (he operated the machine himself, btw). Later I realized he forgot to give me the lead apron. I wasn't happy. I went to my podiatrist this week. Similar thing happened, but this doc did give me a lead apron (snapped 2 xrays of my foot).

It's well known that x-ray exposure causes increases in cancers.

I guess it makes sense that obesity would increase risk for cancers. The decreased blood flow alone can't be good for you. There's more sleep apnea with increased weight gain, and lack of good quality sleep has a very bad effect on the immune system. It's taxing on the immune system in other ways. It's taking on the body in general. Respiration. Heart. Joints.

So being too fat isn't good for you. Who would've thought that?

Todd