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Any way to determine how long primary tumor has been around?

alice124's picture
alice124
Posts: 874
Joined: Mar 2012

As I've stated before, I find a lot of value to this board and one of the many values is it makes you think. In reading some of the other links where people discuss possible contributors to their cancer, I noticed some people assign age to their tumors, e.g., "doctor says I've had for four years," etc.

None of John's doctors ever mentioned how long his cancer has been around, and I assumed it was something that could not be determined. Can it be determined? If it could, it would allow us to flashback and try to come up with things that may have contributed to cancer. I've googled to try and find out but have had no success.

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

There's guesswork involved here Alice but it's reckoned that for most tumours the growth is about 1/3 to 1/2 cm per year. However, some cancers are more aggressive than that and grow quite a bit more rapidly and that probably includes your Husband's since it showed sarcomatoid features.

Bennette
Posts: 65
Joined: Mar 2012

alice124,

I am new to all this, my mom was just diagnosed in the past week. My siblings and I have been asking why too, what caused this, etc. So far the best explanation I have found, is on the MDanderson.org website if you just use their search box and type in " anti cancer ", you will get an list of related items. Choose the one titled "Anti-Cancer: Explore a New Way of Life - MD Anderson Cancer Center ..." and the next line starts with "Video" - right now it is the fifth one on the search list. This video was very enlightening as to why there is such an increase in the rate of cancer. I don't know if it will help you or not, but it has a lot of good information it not just for understanding why, but for changes that will help prevent or fight it.

My mom's doctor told us "it has been there for quite a while." That is the only aging information we were given.

As we continue our search for more information, I wish you luck on your's too!

Bennette

Limelife50's picture
Limelife50
Posts: 414
Joined: Nov 2011

From what I have been told RCC ttumors Average 1CM per year with grade 1 tumors growing a little slower I think this is because grade one ttumors cells are smaller where as grade 4 tumors cells are twice as big which would explaiin the more progressive grwoth of a grade 4 tumor.

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

This is from a paper on the topic

"In the landmark report of surveillance of kidney tumors, Bosniak et al. retrospectively reviewed the imaging of 40 incidentally detected <3.5 cm renal masses that had been followed up for a mean of 3.25 years (range 1.75-8.5 years). Of 26 tumors that were eventually removed after an average of 3.8 years (range 1.8-8.5 years), 22 (84.6%) were histologically confirmed as RCC. Variable tumor growth rates were observed, but the overall mean linear growth rate for all tumors was 0.36 cm/year"

cindygodfrey2
Posts: 56
Joined: Mar 2012

My husband was just diagnosed with a tumor a few days ago and his urological oncologist told him he has probably had this for approximately 10 to 12 years. He has about 8cm tumor.

Limelife50's picture
Limelife50
Posts: 414
Joined: Nov 2011

Please correct me if I am wrong but according to your math it took twelve years for my 5CM tumor to develop,you also fail to take grade into account,as I do know for a fact ,higher the grade larger the cancer cell,hence faster growth rate.

Beingbless
Posts: 46
Joined: Mar 2012

I just removed a clear type and stage 1 grade2 cancer 5 cm tumor, the surgeon said it should take about 4 to 5 years period to develop.

So, it's all depend on type, grade and stage/size of the tumor.

Beingbless
Posts: 46
Joined: Mar 2012

I just removed a clear type and stage 1 grade2 cancer 5 cm tumor, the surgeon said it should take about 4 to 5 years period to develop.

So, it's all depend on type, grade and stage/size of the tumor.

Beingbless
Posts: 46
Joined: Mar 2012

I just removed a clear type and stage 1 grade2 cancer 5 cm tumor, the surgeon said it should take about 4 to 5 years period to develop.

So, it's all depend on type, grade and stage/size of the tumor.

foxhd's picture
foxhd
Posts: 2019
Joined: Oct 2011

What a good question. I also was only told that it had been there a long time. Surgeon was alittle surprised it wasn't picked up during tests for and removal of my Gall bladder several years earlier.

rae_rae's picture
rae_rae
Posts: 270
Joined: Oct 2010

I had an ultrasound in 2000 after suffering my second, and last, gallbladder attack, and subsequently had my gallladder removed in Nov of 2000. I remember they reported a small cyst on one of my kidneys then, I just don't remember if it was my left. I then had a CT scan (my first ever) in 2001 for kidney stones and nothing unusual was found, other than the stones.

I had a 9cm tumor removed in 2010, so at some point between 2001 and 2010 it started to grow. It was furhman grade 3 (3-4 is what I was told, I like to believe it was a 3).

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

I'm astonished, Fox. I've assumed that that was the first question most would ask. It was certainly the first question I asked and had the reply from an expert that the received wisdom is that most (non-aggressive) tumours grow at 1/3 t0 1/2 cm per year and I've confirmed this in the literature (see the quote I gave above).

It does depend on cell type but not on cell size in the way suggested by Limelife whose comments above are, I believe, completely mistaken. (Limelife, I'm happy to stand corrected if you can show authority for your statements - it's important for us all to get our facts straight so I'll concede graciously if you can demonstrate that the experts I'm quoting are wrong.) I offer the following exposition which suggests quite the opposite:

"Small cell cancer is a type of lung cancer.

Most small cell cancers start in the lung but they can first occur elsewhere in the body -- for example in the bowel, bladder or prostate. Small cell cancers grow fast and spread quickly, so they are hard to cure. Small cell lung cancer is sometimes called oat cell cancer because the abnormal cells look like oats under the microscope.

Blood and lymph moves through the lungs as it circulates throughout the body. So it is very easy for small cell cancer cells to spread very quickly. This kind of cancer can spread to any organ, but most commonly affects the brain, liver, adrenal glands and bone.

In most cases, by the time it is discovered, it has already reached other parts of the body. Often small cell cancers are in other organs even before it shows up on imaging tests. "

[http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/24432.html]

Rae, unfortunately, as I said yesterday, higher grade (i.e. more aggressive) tumours grow much more rapidly and by the time they turn sarcomatoid it's a different ball-game. Happily, yours only had "sarcomatoid features which is why your path report showed Fuhrman grade 3. In contrast mine had already become mostly sarcomatoid, hence grade 4 and probably growing so fast that in only about 3 months or so I have a new tumour.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Mine was around the 5.0cm mark and the doc said it had been there for at least 2 years and probably a lot longer. It stopped growing almost 2 1/2 years ago when they took it out, not much else matters to me.

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

Lucky boy (and may your luck hold out forever)!

But I suppose that it does really matter Gary. Fox remarked that Alice had asked a good question and that's right, though perhaps not so much for the reason that prompted Alice's asking it (it's probably a vain hope that we can guess what led to our cancer. I had the same thought which was why it was the first question I asked my Urologist).

The importance of having some idea of the answer is in the prognosis. If the rate of growth suddenly accelerated or the whole thing developed over a short space of time, the implications are pretty clear, even after it's been removed. More frequent and fastidious subsequent monitoring is called for in that situation to catch the likely recurrence early.

It's great to have your smiling (actually usually grinning) face still around here because you're not at much risk of further problems and we're all glad it didn't turn out otherwise.

garym's picture
garym
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As I re-read my post, I see where you are coming from. It is an important and common question, I asked it myself, and I meant no disrespect. The answer I got was just so non-specific that it left me with feelings of spilt milk I guess. My apologies.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

The recurrent nodule in my right lung grew from 0.9cm in 06/2009 to 1.0cm measured by CT before got it wedged out in 05/2010. And the actual size from the final pathology report I vaguely remember was 1.2cm. Just for your reference, I guess everyone is somewhat different. My RCC is type 3 grade.

Jon

icemantoo's picture
icemantoo
Posts: 1618
Joined: Jan 2010

This is one of those questions they give for board certification of Urologists. Each year the Urologists in training study and memorize the correct answers from the year before for each type and size of Tumor. Each year the questions remain exactly the same, but the answers change as a result of new reseach and studies. Those Urologists who give lasts years corrct answers flunk that part of the test.

PS The doctors in ecoomics have the same problem on their finals. Every year the questions remain the same, but last years answers are no longer valid.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

If you did CT's for a few years, and can measure at each CT - then yes, you could determine rate of growth. If not, there is no definitive way of telling. The rest is all inferential or hypothetical.

alice124's picture
alice124
Posts: 874
Joined: Mar 2012

Thanks for all the information and insight on this question. While it doesn't look like there's a definitive way to age John's tumors, I know more now than I did when I asked the question. Thanks everyone.

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

Yes, Raj, that's the way to go about it and that's how the conclusion has been arrived at that, on average, tumours grow at 1/3 to 1/2 cm. p.a. but with a fairly wide variation.

It's interesting to see that Jon's apparently grew 0.3 cm. in 11 months - bang on the average.

4 hours ago I was told by a consultant that I might have had my tumour for 30 years - he volunteered that information during a consultation. He also confirmed that rate of tumour growth has nothing at all to do with cell size. Grade 3 and 4 tumours could be expected to grow faster, particularly when sarcomatoid, but that has no connection whatever with cell size.

alice124's picture
alice124
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Joined: Mar 2012

Appreciste all your info on this topic and even taking it to consultation with you. Sometimes it seems the more we ask about this awful stuff, the more magnification of how many dangling questions are out there.

How did consultation go? Any decisions on next step???

Texas_wedge's picture
Texas_wedge
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How funny you should say that Alice. My Wife went with me and we both asked a few (!) questions. She comes from a family with physicians and gynaes, an uncle who taught neurosurgery etc. and she herself taught medical students for 20 years in the very hospital we were in. The consultant appreciated that we both had a bit of relevant knowledge and at one point said there comes a point where you need to rely on trust in your specialists - you can reach a point, he said, where a complete answer would need a year of medical study to understand it fully. He discussed my situation with us at breakneck speed for an hour and a half so we covered quite a lot of ground!

Outcome - I'm scheduled to go back in for another big carve up on 30th of this month unless a space becomes free sooner. Op. will take at least 2 or 3 hours so a biggish slot would be necessary for that. No systemic therapy indicated at this stage. If lucky, removal of the presumed residuum will suffice and I am on the most aggressive surveillance possible with CTs expected at 3-monthly intervals for the foreseeable future (at nearly 70, considerations of radiation exposure are different than for young whippersnappers like Raj and the prognosis is dismal enough to mean that this course of action is a no-brainer to ensure fast follow-up of any subsequent nasties).

If we encounter more mets, surgery will cease to be a sensible option and sunitinib may be next so I can compare notes on Sutent side-effects with other friends here.

I've been fielding calls from pals on this side of the Atlantic and just told a golfing journalist friend (a 3 year RCC survivor, incidentally) that I will soon be unique among golfers on these threads in having played a starring role in 2 major opens. Eat your hearts out Gary, Fox, Wayne .... !!!

As I've said before, you have to retain a sense of Tumour.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Tex,

I'm really sorry to hear about your upcoming surgery. I hope this will be the definitive one and that no other nasty mets will ever rear their ugly heads again.

alice124's picture
alice124
Posts: 874
Joined: Mar 2012

Wow – tumor humor, a personal fav. . .

Kidding aside, know my thoughts and prayers are with you. With all you give in the way of time, expertise, diplomacy, empathy, and, yes, humor, I'd like to say sommething more eloquent but am at a loss at the moment. Just know the sentiments are sincere.

2-3 hours - not even a round of golf. . .

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

and now I'm surrounded by gorgeous film stars - wouldn't you just know it!!

foxhd's picture
foxhd
Posts: 2019
Joined: Oct 2011

Hey T-W, I'll take the high road and say I'm glad to hear you are the chosen turkey up for another carving. Get rid of those nasty giblets. So what if it slows you down for a couple weeks. Carnoustie needs to reseed your divots anyway. I'm happy that surgery is an available option. And that you made that decision. Hopefully others here will learn how to move forward like you. Looking forward to the goal. Not the obstacles.
your good friend ,
Fox.

foxhd's picture
foxhd
Posts: 2019
Joined: Oct 2011

I'm so flattered to still be considered a gorgeous film star...you couldn't be referring to the young ladies. That just wouldn't be right.

alice124's picture
alice124
Posts: 874
Joined: Mar 2012

Fox - Of course Tex was referring to you--how could he not? (Just look at that sweet face!)

In my world, you, Tex, Mike, Lisa, livealive, iceman, rae-rae, Gary, and all of the other too-many-to-mention contributors on this Board are gorgeous STARS and Superheroes.

I joined this group trying to help John, and I think some of the information I've gleaned and shared with him has helped him. But it's also helped me. I can breathe again and I think I'm ready to walk into the Dr.'s office with John tomorrow and face/accept the news--whatever it is--knowing there are options out there and recognizing the strength of all of you. Thank you.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Alice,

I appreciate the kind words, I can tell you for sure that I have received much more than I've given here and it has been an unexpected gift. I believe all things work together for good and belonging here has helped offset the bad of RCC.

Good luck at the Dr. tomorrow,

Gary

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Texas,
I am sorry you have to endure another surgery so soon I will be thinking about you.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Tex Tex Tex,

While a second "open" will change your amateur status you won't be considered a seasoned pro until you play the cOuRse at least 6 times like me and that excludes several minor pro-am rounds. Seriously, as long as surgery remains an option, go for it, recovering from it has to beat the side effects of the drugs and who knows, maybe they'll get the last of it this time. We're all pulling for you to win this major in a walk.

djc2
Posts: 17
Joined: Nov 2011

Tex, Good luck with your next round. It sounds like a good sign that surgery is an option; that maybe this time around you will get this thing out of your system. Like many others here, I am pulling for you.

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

Thanks one and all. Last time the pain control was a problem but at least we found morphine was fine for me. I hope the same is true again. If not, I suppose something like fentanyl may be required. At least I'll know to ensure that I check that when the bed is changed they lower it again - in December it was only after several days that I realised I shouldn't have needed to jump down to the floor when getting out of bed!

foxhd's picture
foxhd
Posts: 2019
Joined: Oct 2011

I had told my surgeon that I was having problems with my slice. I asked him if he could just tighten up my left side after nephrectomy to help encourage a fade. Stress from cancer? Hell no. I was making jokes rolling into the OR.

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

and while being rolled back out of the OR as well I bet.

Had a good round at Carnoustie yesterday - do you think shedding my right kidney may have brought my hook under control? I hope your surgeon is a good enough golfer to have made the necessary alterations for you.

Surprisingly (in view of an embarrassing freak DIY mishap yesterday, in which I fell in my kitchen and had a (formerly) built-in oven fall on top of me - being a pyrolytic it had a triple-glazed glass door, so rather heavy) I took more than 30 secs. off my post-op best 10,000m. rowing time this afternoon. I just hope that doesn't spoil tomorrow's golf but it felt really good.

This may be a very naive question but do you have any clue as to how anyone else on your MDX trial is doing on it. Wouldn't it be superb if others are doing as well as you are?

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

So if the others are not doing too well - I want to know what Fox is doing which seems to work.
If the others are doing well, then the MDX is working.
I bet we won't get that answer for a while.
Fox, what are the side effects of this drug that you are experiencing ? If you don't mind my asking. Does it work the same way as Pazopanib ?

foxhd's picture
foxhd
Posts: 2019
Joined: Oct 2011

So far, there are less than 10 on the trial at Yale I believe. I was told one person had developed mouth sores and some foot/hand syndrome with inflammation and skin peeling. Raj, you're right about not getting any up to date answers for a while. Nothing current is on the net. I have been told that they have seen patients who completed phase 1 trial continue to have reduction in tumors 18 months later. The immune system remained very active.( I'm in phase 1B). Potential side effects may be fairly typical. Fatigue, weakness, rash, dry skin,itchiness,diarrhea, protein in urine,decreased white blood cell count,dry mouth,fever, chills, thyroid changes, shortness of breath,joint or muscle pain hair loss. In general people have tolerated this drug very well. This drug also called anti-PD1 works by blocking the normal die off of T-cells which fight viral, bacterial infections and cancer. The T-cells then become aggressive against the cancer. The drug needs to be reinfused every 3 weeks.

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