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This process makes no sense to me. Any info?

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

July, hubby had what we thought was a UTI.  He took antibiotics and it 'cleared up'.  I'm air-quoting, because it obviously could not have just cleared up, but it seemed to.

Four months later, another one that would not stop after three rounds of antibiotics, so his GP sent him for a CT.  CT scan showed 10cm mass on right kidney, report states 'consistent with RCC', nodes inflamed.  Sent to LSU/UMC in NOLA, bone scan came back clean.  It's not in his bones, brain (so they say) or the vena cava.  At this point, everyone is looking at a radical nephrectomy, barring any issues with the chest scan.

Dr. called Monday, said the scan came back with it in his chest and aorta, so they want to do oral chemo to shrink it before doing the RN.

My problem with all of this is that we haven't even had a biopsy, all it is is a bunch of scans.  He was told that if he does nothing, he's got no more than two years, but if the tumor (I think in the aorta) shrinks, they will consider a RN.  I don't understand how we are getting all this information without even having a biopsy.  He has no symptoms of anything; he put up a fence this weekend!  He feels fine, good appetite, no signs of another 'UTI', just a vague pain, which he's told is from the size of the mass, in his side.

All he keeps hearing is TWO YEARS, TWO YEARS.  Does any of this sound like anything anyone else here has experienced?  None of it makes sense to me.  I don't see how they even know what it is without pathology.  It makes no sense to me to not remove the kidney because that's less for his body to have to fight off.  We haven't even seen the scans yet.  Biopsy set for Monday, finally.

Frustrated.   SO frustrated.

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

Cakelady,

 

Occasionally a tumor will turn out benign, like 5 to 10%. However at 10 cm  the odds that it is benign are less than that. Given the fact that it is in his chest I'm not sure there is any purpose to the biopsy. At 10 cm it is pretty standard to do a full neph. Whether or not to do chemo to shrink the chest mets first is above my paygrade. At 10 cm this is something that has to be addreessed one way or the other ASAP. We are here to help you as all of us on the board have had a neph (partial or full). Mine was 13 years ago with a tumor a little over 4 cm. Do not take them up on doing nothing to see whether the 2 years is accurate. I wish I could give a more favorable spin to my response.

 

 

 

Icemantoo

 

 

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

We have no intention on finding out what doing nothing will do.

I have emailed the urologist to try to get some time to talk to him about the scans and test results Friday when he has to go in for whatever consult they have him set up for.  Barring something major they are not telling us, I just don't understand not removing the kidney to remove the tumor so his body does not have to fight that much harder.  Maybe it's so far in his aorta they are afraid of him dying on the table.  I just don't know.  UMC is a veritable beehive and trying to get to anyone is an effort in itself.

We got him on Medicaid for emergency purposes only.  We are not sick people (funny, not funny) so paying the exorbitant costs of insurance seemed so wasteful.  We are going to transition him to 'real' insurance via the ACA for 2016 during open enrollment, but in the mean time, we are kind of stuck with whatever Medicaid says.  I've called a highly-recommended oncologist in my area and I can pay cash for a consult for him to read the scans and give us a second opinion.  We keep hearing the doctors at UMC are world-class, as is the place itself, so while it may be just spinning wheels, I feel it's only fair to get that second opinion.  I feel like having Medicaid is a bit of a detriment right now; I don't know if we are being dismissed, or perhaps not receiving what we would otherwise by having 'real' insurance.  I also would prefer to work harder to pay premiums so everything else we've worked for doesn't get taken away from our son in the end.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome to the forum, but sorry about how you got here. Your news must have devestated you both.

I had a 13 cm tumor and full nephrectomy, so far so good! Lots of people here have proven that there is MUCH life after diagnosis. Don't be discouraged, or lose hope!

So here is my input....is a biopsy really necessary? Thing is, the risk of the cancer spreading more becomes greater when doing a biopsy (spillage). They know he has cancer, so why risk it? (something to investigate). Go on another site - Smart Patients - a lot of knowledge there as well. It might be a good idea to get a second opinion as far as treatment possibilities. Depending where you live, you could get a good reference from people here or on Smart Patients.

Don't be afraid to come on here and read, post, vent, cry, scream, support. We are here for you and will help you out as much as possible.

Hugs

Jojo

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Here's what I don't understand.  I guess I need facts.  How do they KNOW it's cancer without a biopsy?  He painted cars for a long time, including two around the time the 'UTI' showed up.  Who's to say what's in his lungs is not some nasty overspray he sucked in past his respirator?  I mean, does cancer look like a certain thing?  The first CT of his kidney just showed a blur.  Up until Friday, they were still saying they don't even know if the nodes are being reactive or are actually affected, that they wouldn't know until they opened him up and felt them, hard or squishy. How did it not show anything in the aorta until the chest scan when from what I've read, it gets right in there by the kidney, like by the vena cava.  And it's not there, either.

I want to find out whether embolism is an option to starve the tumor.

I guess there's different types of denial.  I'm okay with it being cancer, if they KNOW it's cancer. Maybe I'm just in denial about the fact that they are just wanting to give him pills when everything I read says a RN is a good first step.

 

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

I see a lot of red flags with the story you are describing.  They don't know for 100% certainty that it is cancer without some type of pathology.  Also how are they going to try and shrink without even knowing what type of kidney cancer it is??? There's several different types of kidney cancer and some of those subtypes do not respond to treatments the same as the others do.  You need to be with an experienced urologist who is very familiar with renal cell carcinoma. MD Anderson is 6 hours and 40 minutes from UMC. I went there for my second opinion surgery and I had a great urologist here in my home town, but the experience issue is what troubled me. The doctor I saw here had done about 6 partial this HTML class. Value is partial nephrectomy in the past 12 months and the doctor at MD Anderson had done 4 in the week before my appointment.  

 

Good luck!

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I'm no doctor, but I do know there's a certain order to things. The doctor originally scheduled to do the RN is tops in the area.  I read up on him.  He's through MD Anderson, specializes in this sort of thing, so I'm at least confident about him.

I feel like this is moving sooooooo slow.  It's been three weeks already. I think the original scan from when his GP was concerned about the 'UTI' that would not go away was 10/28.  I don't like this waiting because I know nothing good can come of it.  I suppose some things take time; the oncologist's office I called about a separate consult told me that path takes at least a week to come back, so I know there's some amount of hurry up and wait we have to deal with.

Bellweather
Posts: 102
Joined: Jun 2013

Cake Lady,

I am from the MS Gulf Coast and had a 9cm rcc with invasion into my vena cava.  I was bleeding internally and my urologist told me if I did not go directly to Dr. Sean Collins (Oncology Surgeon at E or W Jeff) that he would no longer be my doctor.   I must tell you that he was absolutely correct as Dr. Collins is the leading expert in your area.  Please go get an opinion from him if you can.  Please do not be discouraged that he looks like Doogie Howser, there is plenty of literature about him you can look up.  I hope this helps you,

Sincerely, 

Bellweather

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Kidney cancer is pretty cut and dry on a CT scan. It will be a 10 cm mass and it will be vascular. Has it's own blood supply very clearly making it easy to confirm without a biopsy on a CT. 

Lots of nephrectomys without biopsys have occured in the majority of us posting here (my husband included). 

It is my best guess that removing the kidney with the tumor in the aorta would be too dangerous at this poiont. That is just my best guess as a layperson that reads. I would seek out a second opinion. 

As for the "2 years" well we all know hear that is CRAP. Dont' believe it. Especially with therapies emerging and great ones becoming approved recently. 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

It doesn't seem so bleak.  Thanks to all of you.

 

cupcakes all around!

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

I am a native of Nola, having just moved to Austin two years ago. I am so sorry we have to meet here due to your husband's cancer diagnosis.  University Medical Center is an outstanding facility, as is West Jefferson. My husband and I were treated at West Jeff for over 20 years and the doctors there are outstanding. 

I was just diagnosed with Kidney Cancer in September and, fortunately, found an outstanding urology oncologist here in Austin who went to LSU Medical School! (Small World)

My first question to my oncologist was concerning whether or not the cancer would be biopsied. Apparently, and I don't know how, but both the urologist and oncology urologist said that they did not need to do biopsies, or at least, in my case they would not have to.

I hope you are able to find the answers you need for your and your husband's peace of mind.

As I do everyday, I will keep you husband, you and all of our fellow followers on this site in my prayers.

 

Hugs to all.

 

Nancy

resistance2
Posts: 16
Joined: Feb 2013

My 2 cents:

First of all sorry to hear, my guess about the biopsy is that i was told inserting a needle into the rcc tumour could cause it grow, someone on the board described eloquently as a dandellion spreading out when disturbed, so based on the location aorta they are being caution of doing biopsy, the 2 year rule is all bull, with the medicines around its way longer. All the best.

 

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I'm going to ask about all of this before we have it done.  It makes sense both ways- yes, to find out what kind it is to properly treat, no, because it will disturb it.

Bellweather
Posts: 102
Joined: Jun 2013

After Dr. Collins and his choice of vascular surgeon performed my emergency mass nefrectomy,  I was diagnosed with mets nearly 2 yrs later and wenr to MD Anderson.  You csn not go wrong with that option either.  Whatever you decide, a 2nd opinion by an experienced specialist allways recommended in my opinion. 

We are praying for you, there are more options at MD Anderson than the New Orleans area.

Sincerely,

Bellweather

 

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I have orders that were already on the books this week and it was too late to call the people and cancel on them, so this week is kind of a wash.  Not that we can do everything anyway because we have to wait to collect all the scans and find out about the biopsy, but I am doing my research and writing down everything I can so I at least know what to ask.

The plan is to transition him to real insurance for 2016 and then go after everything we can as far as opinions and options.  We've already been told that the path report for the biopsy won't be back until 12/08, so that's another three weeks.

It seems like so much foot dragging.  It's already been three weeks since the initial report came back showing the mass.  Do things typically move this slowly?

MattInVa
Posts: 50
Joined: Sep 2015

To relate more experience. I went to the ER with pain and blood in urine on Sept 26. I had an 11cm mass on my RT Kidney extending to my vena cava but before my heart. They operated within 3 days to remove it. The doctor postponed all other scheduling to do mine. I have to say they where johnny on the spot even contacting me same day as my diagnosis. To be honest when dealing with the the major veins and arteries it becomes a much more involved surgery.  They never did a biopsy on mine beforehand but by that point my kidney was a mess anyway and a contrast CT tells the story. The ureter was becoming blocked with blood clots and backing up, hence the flank pain. In the case of it being in the chest you will usually have your urologist and a chest cracker also. They had one on standby for me just in case they needed to go above the diaphram. I believe that is why they would like to shrink it, keep out of the chest. I would call BS on the biopsy end though.

I was not on medicaid but just by chance for the first time in years taken a short term policy on insurance a few weeks before my symtoms showed up. I too will have to look at the ACA plans but to be honest in my area they are aweful for cancer. Almost all are HMO and the only 1 or 2 PPO/POS do not include any of the cancer centers that do advanced studies or treatment such as HDIL-2. At most they pay  50/50 for out of network. Unfortunately there are few options for coverage due to the pre-existing nature of our disease. 

Depending on income though the drug companies have free or reduced drugs available, I have utilized the Novartis patient foundation and they supply me with my Votrient. 

Disability through SS is another option, it allows medicare to kick in after two years (Perhaps earlier, still researching) Stage IV kidney cancer is a compasionate allowance for disability.

I feel for you. I have been healthy and fit all my life, never smoked and still struck by this at a realitvely young age (Im 45)

 

Matt

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

strangely enough, I got a call from BC/BS the other day.  She'd spoken to my husband about three weeks before- just days before all this happened.  I told her aobut the RCC and she said there are still plans and options and went down a whole list.  I did tell her I want the BlueMax because it covers nationwide treatement, giving us the option of going anywhere he can get the best care.

JoanneNH
Posts: 115
Joined: Sep 2013

What are they going to biopsy?  The kidney mass or something else?

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

They want to find out what kind of cancer it is, probably because it's advanced and they want to try to get treatment right the first time for a better chance at controlling it.

They've been very upfront; he will never be cured, but we have a shot at maintenance to give him a good quality of life.  I'm heartened by the stories on here of people being given some pretty devastating news and still living a good life for years.

I asked about the dandelion analogy and was told that they are doing it with a sheathed thingie.  I didn't get the name of it, but the collector-grabber-whatnot is inside a sheath, so there less chance of contamination like the old way where a single needle touched both skin, healthy tissue, and cancerous cells.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I know this is SO frustrating. Currently I am waiting (3weeks so far) for a biopsy appointment for my thyroid. When they found my 13 cm kidney mass 2 years ago it was 2 MONTHS before my nephrectomy was scheduled. My problem was that local urologists didn't want to touch it. They referred me to an excellent, but in-demand uro-oncologist. Kidney cancer is somewhat slow growing. However, that doesn't make the waiting any easier!! It is the hardest part. Hang in there. I know right now it is all consuming for you. But there is excellent care and new procedures and medications that are making great headway!

Thinking about you!

Hugs

Jojo

 

Ladylacy
Posts: 773
Joined: Apr 2012

There is always a wait for this test and that test before anything is done.  My youngest son at 42 was diagnosed with kidney cancer.  No biopsy because they said there was a large mass contained in the kidney and after removal we were told it was RCC.  He wanted to finished getting his teacher's degree before having it removed -- something like 2-3 months and the specialist agreed.  He did find and there was no spread.  Now almost 7 years later they have found a suspicious spot on his other kidney.  So far he has had a CT and sometime of ultrasound and they still can't determine what it is.  His wife asked about a biopsy and was told not at this time.  So on 12/1 they are going to do a CT with contrast even though it can be dangerous to the kidney and a scope to look into his bladder because he was passing blood.  Now he does has a history of kidney stones for years. He was feeling fine and having no problems until he passed the blood.  The only thing he was dealing with was his father's death.   When they went to see the specialist his wife had a list of questions and kept asking them.  She told me she was very pleased with the time the doctor spent with them and answering their questions.  Their first specialist had left UT (Univ of Tenn hospital).  Due to his age the first time, I feel, his insurance would never approve an MRI or some other tests.  Hopefully this time, if the specialist feels it necessary, an MRI and bone scan will be done.

This waiting is horrible but we have been thru it before.  His father just passed away after a 5 year battle with cancer and no it wasn't kidney cancer.  His was head and neck that kept returning and spreading.  And I remember the waiting to have a biopsy and then to start treatment and then to have surgery and then for all the testing done afterwards.  It was never quick and even waiting to get a doctor appointment with the specialist was a wait.

Wishing you and your family peace and comfort  --  Sharon

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

First of all, I am so sorry for ALL you and your hubby are going through right now. Yes, the waiting is difficult. BUT I am glad your hubby has YOU to advocate and fight on his behalf. He's so lucky. The picture of the two of you says it all!

Just know WE are here to help you through this struggle and walk along side you if you want us to.

SmartPatients.com is another good source to gain information and support.

Seems you already are receiving such good information from us.

I too had to wait for about 2.5 months, but my tumor was small, yet in a precarious place in kidney so had to have a radical nephrectomy. the Urologist I saw showed me the difference between the suspect neoplasm's margins and the cysts I had too.

I am doing fine nearly two years later. AND there are such good treatments out  there.

I would just ask that you get 2nd opinions to ease your mind.

Tell your hubby a whole TROOP of CSN warriors is behind him all the way!!

Hugs to you both!

Jan

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I'm sorry you had to join, we all understand how you feel because we've all been there. Mine was 10cm and seemesd confined to the kidney so I had emergency radical neph, and pathogy showed it was really confined. But I've read some other stories that seemed lime yours, when there are some complexity Docs prefer ambulisation/oral drug,.... And about biopsy,well there is almost no use of biopsy when we talk about kidney carcinoma, they can almost determine if it's malignant or benign by looking at CT scans. Although the exact info will come after the surgery is done and the tumor is sent to the pathology department.

Forough

 

 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Very sorry you have to be here and wishing you and your husband the very best. About biopsy, unfortunately at 10 cms it is almost certainly cancer. Also imaging techniques are excellent at ruling out fluid filled cysts and other harmless growths. But even if it were benign, at that size it has to come out regardless. Which is why biopsies aren't routinely done. Aside from the small risk of spreading cells, it could also give a false negative by taking tissue from healthy kidney area. This is how they explained it to me when I asked about a biospy. My path report was back after a week, but my surgeon told me the night of the surgery that it was cancer. They do quick biopsies on the tissue right there while you're under surgery, plus from years of experience he could tell with 99.99 percent certainty. And sure enough, a week later it was confirmed.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

It's ccRCC, kind of what we expected.  Nothing worse than what we expected except that the mets in his lungs are larger than expected.  The Oncologist, Dr. Ruiz, is a FAR cry better than the first guy we were talking to.  We both felt like we were kind of being dismissed, more a number than a person, by the first doctor. Ruiz explained everything, making it clear that we know he will never be 'cured' because of it being advanced, but he was very optimistic about being able to treat and control it.  He said repeatedly about John being young and active and fully functioning, and he's also pushing for the RN, which is what we wanted in the first place to reduce the tumor burden.  They have meetings regarding patients weekly and he's pushing us into the closest one, already moved our next appointment up a week, and paperwork filed for Sutent, which is what he'll be on.

I was really grateful to be able to go in there and talk about things with him and not just sit there doing the cat head-tilt while he said big words, and a large part of being able to do that is because of this forum and Smart Patients.  So thanks so much for that, everyone.  I know you all know the appreciation of not feeling alone, but I have to say it anyway. My eternal thanks.

The Keto diet is going really well; I have him on nothing but grass fed, natural, as little additive/preservative as I can.  I make his dressings and mayo, have called customer service numbers on labels to verify ingredients, successfully made ghee... all kinds of stuff.  I'm thankful that I have enough skill to make this work.  The added cost of organic and natural stuff is definitely being offset by the money not being spent on garbage, so that's a wash.  He feels good, and is dealing with the lack of variety (just because I've been too busy to be able to figure out a full menu) right now, and hasn't been complaining about anything other than discomfort from the tumor.

Thanks again, everyone.  We're making it work.  Another two weeks of just watching for the next tree, taking the scenic route there.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Honestly, so many of us have gone to RCC specialists and not had a biopsy of any kind, I have to suspect there is a reason. Tumors are not uniform. I suppose if they take a few samples and see some ccRCC, they can assume that's what it is (at least), but until they get that puppy out and slice it up and look at it under a microscope, they are not going to know with certainty what kind of RCC it is. At least they know something about what type of cancer it is. Another one of the reasons they don't biopsy, is a high percentage of false negatives. It's easy to miss cancer completely in the kidney when taking a biopsy.

When are they going to take it out? You cannot be on any of these drugs (Sutent, Votrient, etc) and have surgery at the same time. At least that's the way it was.

I know Stage 4 with multiple mets can get complicated to figure out what to do. Glad you're seeing specialists that know what they are doing.

After reading your posts, I'm not clear what the treatment plan is. Will they remove the kidney soon? Or give drugs first?

Whatever special diets or dietary supplements you have hime take, make sure to give full disclosure to your doctor(s) what you're doing. Some of these approaches interact with the drugs they give in unexpected ways.

Best wishes,

Todd

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

The original doctor, the jackhole, said no to removing the kidney, basically because if they can't take it all, they take none.  Which is BS. Total stonewall on just about everything.  I couldn't even have a conversation with him because he was so dismissive.  I ain't no doctorin' type person, but I am not dumb; I presented him with good information, research I've done, and it was just 'meh'.

The second doctor said he wanted to present to the board and push for removal, which is what we have wanted for weeks.

The surgeon called the other night and said he was approved for removal.  We met with her Friday.  She was very honest, letting us know this is not a cure, which we knew, that it may not solve all of his problems, which we knew, that it may create more problems, which we knew, and that it may not make a bit of difference, which we knew, but she is willing to go for it.  I believe she and the second doctor do feel this is a good approach for him because of his young age and full functionality.  We discussed with both of them about a lot of things, and I believe it's a good plan that's going to work out well for him.  Good conversations with both of them regarding everything I've researched. I felt better just having someone have an actual conversation with me.

He is 100% hardcore about the Keto diet; he doesn't love it, but I make different stuff for him, so he doesn't really feel deprived.  I asked the surgeon if there's anything we can do, diet-wise or other, to help prepare him, and she said to just keep doing what we are, and that she thinks the diet is a good thing for him, too.

He was supposed to start Sutent today, Tuesday, but we have that on hold for the surgery.  She's holding two openings, Monday and Wednesday, because she wanted a clearer scan.  She thought one of them was a bit blurry, or just not clear enough for her liking.

 

I'll update when anything new comes in... I've been swamped this week past.  He still wanted to have our Christmas party, work, which is usually slow this time of year, has been booming, the hospital, the regular Christmas stuff, all the planning and research and meal prep... I'll need a vacation after this!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

There are a couple of "theories" that removing the primary tumor is a good thing. I'm no doctor either. I'm just relaying what I remember from conversations with my oncologists and also my uncle who is an oncologist. The first idea is that reducing tumor load is good, no matter how you do it. The body is better off with fewer tumors to fight. That's the idea. There's also an idea that removing the primary tumor helps somehow. I don't know if they have scientific evidence or proof of either of these ideas.

Personally, I would want it out. A 10cm tumor and a malfunctioning kidney (how could it be functioning?) is probably not a good thing to have in your body.

I'm glad you've got doctors you can talk to and trust now.

Are you seeing a medical oncologist that has expertise in RCC yet? The more RCC they've seen/are seeing, the better. There is so much change in this area with the new drugs and treatments. I think it's better to be plugged in to someone that is in the RCC research stream and has had lots of experience with this cancer. Most regular oncologists are very intimidated by this disease. It's been seen historically as a tough cancer to treat. It's rare enough that regular oncologists don't see it often.

Best wishes,

Todd

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

From everything I've read, it's not only reducing the tumor burden that's good, because then the body can concentrate on the other tumors, but the original also sends chemical signals to the other tumors.  So if the other tumors have not progressed to the point where they are sending their own signals to other tumors, everything is cut off from each other and it's easier to fight them.  Kinda like killing the signal from the mother ship in the movie Independence Day so the individual ships could be destroyed.

Yes, these people are RCC people...  One of the doctors on the team is a top-of-the-line MD Anderson guy, another has worked with RCC for 17 years.

We feel really good about this. Regardless, we are going to fight until we either win or there's nothing left to do.  Not that there's many options, but it's what our plan is.

 

fingies crossed xxx

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hello, i have read some of your posts, but might have missed some. I am glad you are getting a second opinion. I was a bit afraid when you mentioned that they wanted to do chemo. I am not sure what chemo that is, because chemo is not used for RCC.  That made my hair stand up.  Also, there are other new drugs out there after Sutent.  Votrient is a good one.  There is approval now for an immunity drug called Nivolumab/Opdiva.  That one doesnt have many side affects and far less than Sutent. I would ask about them.  Be sure to see an RCC specialist in one of the big cancer hospitals. I am not sure where you are.  If he can start with Nivolumab i think it would be a good option.  Praying all works out your way.  Always check with smartpatients.com before committing to anything that sounds fishy. Remember in the news there have been doctor that wanted to push chemo on people just to make money. So, i always tell people to get second and third opinions, get a copy of every single report and every single test done.  Keep it all in a file. Ask questions.  You seem to have a good background and doing the right thing with organic, non gmo foods.  Juicing is good also.  There are plenty of nice dishes on pinterest.com as well. I know you will dive in as soon as you have to time swallow everything, but so far you re on the right track.  Hugs!

 

PS.. Ask for a full body pet ct scan.  That is what they should be doing. Not separate xrays, sonos etc.  He should have that full body ct pet scan every three months for quite some time too. Insist on it!

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I think they're referring to it as chemo because most people don't understand it's not chemo.  People hear cancer, so whatever drugs that follow, to the uninformed, are chemo. I suppose it makes sense for them to refer to it this way to not confuse people who are already freaking out over a cancer diagnosis.

We talked about Opdiva as a second line drug, so that's already in the air.  He's an RCC specialist; we're just outside of NOLA, so we have LSU/University Medical Center there, which is where we have been going, an MD Anderson, and Mary Bird Perkins Cancer Center in Baton Rouge. Definitely lots of options there.

As far as Sutent, I hear a lot about it, I see a lot of people on it, and it seems to work well for a lot.  Believe me, I'll be monitoring him and what it does to the rest of him, not just the cancer. If I find he's not tolerating it well, and after 26 years, I know when he's being whiney and when he's really feeling ill, I'll be on the horn with someone.  There are too many options out there to stick with one that's not optimal, regardless of the length of trying it.  From what I understand, the keto diet can help with a lot of the SE from many of the drugs because it's actually pretty easy on the digestive system on its own.

Juicing wouldn't work on the keto.  it's about as no carb as you can get, I've been on it with him for eight days now, and while I may not have hit full ketosis (which is different than diabetic ketoacidosis, just fyi) I feel fantastic.  I've been a low carb girl for a long time, even though I'm a baker, so I'm already used to that lifestyle.  This is just a more refined version of what I was already doing, and it's crazy-amazing just in general.  It's about 180 degrees from what he's used to, but he's willing to hang in there if it does good for him.  Cancer feeds on sugar, especially a metabolic cancer like RCC, so the Sutent starves its blood supply and keto starves its food supply.  We'll outflank it if it's to be done.

 

I'll be in touch, posting and lurking!

angec's picture
angec
Posts: 924
Joined: Mar 2012

Looks like you are on top of it all!  Glad to hear it!  Just be careful with the Keto diet, it can be hard on the liver and the one kidney for some. I am sure you will be watching his blood work carefully!  I know i saw a few people with cancer on the news that said it cured them! So, I hope it does the same for your hubby!  Though, others did juice on the diet, which may have been a little deviation.  I know in the Hoxsley clinic they put patients on the Candida diet to eliminate the sugars and that seemed to work also!  Keep us posted! Hugs!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Cakelady, it is true that tumors live on blood sugars (glycogen). But one cannot decrease the glycogen to a level that would starve a tumor. This is because our brain and nervous system use ONLY glycogens. The hypoglycemic state can irrepairably damage your nervous system. On the other hand, the drug metformin has been used by some to lower blood sugars. Be careful.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I've read up on the keto from numerous sources, and I've found, across the board, including well-respected doctors, that the consensus is that the brain will use keto bodies for fuel in place of glycogen.  Even though we are modernly conditioned to have food available at all times, our bodies have not evolved to that point; our bodies still function, metabolically, as they did millennia ago.  When you think about it like that, it explains a lot about why obesity is a problem.  If our bodies have truly evolved to know that there is, for all intents and purposes, an unlimited food supply, it would not ever go into starvation mode regardless of what we do, and it would not store fat, which is a defense against starvation. Diabetic ketoacidosis will kill you if you're a type 1 diabetic, otherwise ketosis is perfectly fine.

When I tell you that we have had a miniscule amount of carbs over the last 10 days, I'm not even joking: eggs, cheese, meat, raw nuts, fat, olive, almond, and coconut oil, butter, ghee, nothing but dark greens... there's no way to get away from the natural carbs in some foods- even an egg has .6g, I've got it down as low as possible.  We've each lost about 4 lbs, and he tells me daily how good he feels, other than the tumor putting pressure on the area around it.  Sunday, he jacked up my SUV and rotate the tires, then helped the boy put a metal roof up.

Please don't think I don't appreciate the input.  Had I not read up on this for three weeks straight, including loading up my kindle with books, I'd definitely be concerned about it as well!

Does anyone have a copy of Cancer as a Metabolic Disease?  I'm considering dropping the almost 100.00 for it, but I want to know if enough information in it pertains to us, whether it would be helpful or not, before I pull the trigger.

I love this forum so much.  I've finally gotten that dreaded 2 years number out of his head that the original butthole doctor put in there. He sees me posting here, I read him the success stories and all the other helpful information I find, and I can see the weight lifting off of his shoulders, ounce by ounce...

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

The keto I have him on is not the run-of-the-mill keto, which includes a lot of additives, etc.  He doesn't get a lot of salt, no nitrites or nitrates, no meats with added hormones, etc.  Worst case, we adjust his diet for the rest of it while still cutting out the sugars if he starts having problems with it.

Thanks for the input; food for thought is always good! Sometimes it makes us go in an unexpected, beneficial direction!

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

My first reply was for you! Not sure what happened!

 

Hugs back, with a bonus backpat!

nyisles's picture
nyisles
Posts: 30
Joined: Mar 2013

Not sure why the doc is saying that so early in the game. Even if they can't get everything with surgery, there are treatments like IL-2 (and in the future possible Nivo too) that are curative to mRCC. Unless I missed in the posts that it is not clear cell.  I went through IL-2 which cleared up 98% of my cancer, now on Votrient to shrink the remaining nodules down to nothing, then I will be put on Nivo (Optivo) to "clean up" what is left. Nivo is way to early to be called a possible "cure" yet but many doctors believe that it will be and replace IL-2 as a front line treatment.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

what he is.  I won't use them here. We are hoping to have surgery Monday because he's on call over the NY weekend and we don't even want to look at him.

This is the same doctor who told John he has stage 4 cancer over the phone, put a two year number in his head, then, before he even got chest scans back (which we were waiting on with bated breath because if they were clear, we'd have surgery in five days {this was early December}), when John has a plain old upper respiratory infection that John told him he was feeling a little winded over, said, as non-chalant as he could, "Oh, that's probably just the disease spreading to your chest." Seriously, dude?  We're WAITING to see if the chest is clear because things would have been bam, bam, bam, done, and THIS is what you say?

In all of this process, he has been the real holdup.  We know, after speaking with another doctor and some staff, that this is an issue with him.  I realize doctors have to have a certain level of detachment, that they can't be emotionally immersed in a patient, but geez, at least have some compassion, even if you have to fake it.  I told the surgeon who's doing the surgery that if he's good, the best, whatever, then great, just send someone else in to do the talking.  It took me weeks to get the two year number out of John's head.  He complains about the doctor so much that I finally just had to tell him I was tired of hearing about it, so now I hear him complaining to other people about him.  The only silver lining I see to him is that it seems to make John want to fight even harder just to prove him wrong.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

I think the reason they are saying not curative is in managing expectations.  IL-2 has proven to be curative in 15-30% of the people (but it is not be an option for me).  The goal of most treatments is to halt the spread.  They may shrink the tumors, but they do not eliminate them (though the immune system might finish the job).  The idea is they will keep you alive.  

Other than IL-2, the only "Cure" is surgery for stage 1/2/3.  NED does not mean cure.  It can mean you can have a relatievly normal, possibly side effect free life, but with periodic scans.  

I am stage IV but all tumors removed surgically  three years ago.  Today, I am NED.  There is still a better than even possibility of disease return -- I am still relatively young (52), and cured would mean I do not have to worry about it.  Modeling of the disease progression gives me about a 60-70% chance of recurrance in the next 30 years, with a 30% in the next 2 years (three years ago, I was given 20% chance of 3 years disease fre reqcurrance).

Note, other than the last number, everything else is based on my numerical modeling. I have written about it before. 

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hang in there! You are doing admirably! I can imagine how drained you must be feeling with all the research, and now fighting this idiot doctor. It sounds like he needs to go back to school. I wish that when doctors notice that they are becoming dismissive that they would re-evaluate their career and decide to retire. There is nothing worse than to know that you or your loved one is seriously ill, you are hitting dismissive roadblocks.

Am so happy you have found a decent doctor now!

Keep us posted when you can!

Thinking about you!!

Hugs

Jojo

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

what the scan tomorrow shows.  That's a repeat scan because the surgeon is not happy with the one done weeks ago.

I'm wondering if there will be any change in any of it.  I know, I know, it's so short-term in between the two, so likely not, but I'm still really anxious to see if anything has changed.

Hahaha... this is the last weeked with a fully-assembled John.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Any time we measure anything -- temperature, speed, weight, etc, there is uncertainty in the measurement.  The same goes for CT scans (or MRI's, ultrasounds, etc).  Any change in two weeks will probably be within the measurement precision.  For a CT scan, that is somewhere around 2 mm.  (older ones might be 1/2 cm).  Given the rate that tumors grow, a rapidly growing RCC tumor is 2 cm/yr; typical is 1/2 cm/yr.  So, at 2 cm / yr, that would be a 0.8 mm in two weeks, which is within the measurement uncertainty -- if they see 1 mm of growth, it could be that they underestimated it last time, or are over estimating it now.

 

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