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Wensday I hope to find out about my lung mass.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

I am posting here, because you all will understand.  On Dec 19, six months out of surgery to remove a 5.5-6 cm clear cell (Stage 1b, grade 4 from 15% sarcomoid features), I had my first followup scan.  The scan was a full torso scan, including the lungs.  I expected NED, instead, I have mass was found on the upper left lung ( 1.5 - 2 cm).  Since then, I have had additional tests: a PET scan and Brain MRI.  The workup is being done at NIH. 

 

On Wed., I find out what is going on.  I have read on line information, and while it does not look good, it is often dated.  And the sample size is often small (e..g., the study contained 10 people with single sarcomoid mets, three of which survived).  I have overthought the situation;  since I have more unknowns than data points, it is non-unique and underdetermined (I a a computational scientist, sorry for that).  This means that, for example, I am trying to figure out when someone will arrive at my house when I do not know when they left on the ride.  I can only say if this, than that.

 

So, this week, the strugle is sanety.  I want to know.  What I hope for is that the mass does not appear to be active.  However, after the radical nephrectomy, I developed a fever while in the hospital.  There, they did multiple chest x-rays.  I assume if the mass was there then, I would know about it, as they were looking for things like that (however, it is possible that it did not show up on the 2-D x-ray.  So, I am slightly pessemistic.

 

Regardless, I am trying to muddle through until Wed.  Then, I will find out 1) if it is active, and 2) a plan of action. (this is at NIH)  On thursday, I go to my regular urologist for a second opinion.   With a plan, I can move forward.  I know I will not sit feeling sorry for myself -- that is what I did in May after the RCC was found.  Instead, my wife, daughter and I will go on Vacation.  (we will go either way). The thing that I do know is, if they have to do something, I will feel worse immediately after than I do now. 

 

Sorry for the ramble. 

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

At under 50 and with workup at NIH your chances must be pretty good, whatever the findings are on Wednesday and your vacation meantime is a good move. Have they established whether your RCC is genetic or not, and advised re your Daughter?

You probably know that with RCC, where almost  everything is multifactorial and speculative, your  "I can only say if this, than that." is an oversimpification! 

Regarding the info being dated, do bear in mind Donna Lee's great comment that we are the crew who are changing those numbers. 

On the principle of hoping for the best but being prepared for the worst-case scenario, I think you should expect that the lung masses will be RCC but know that that wouldn't be really dire.  I'll take that apart:

With your pathology, although the tumour was only of a modest size (because it was caught at only 48) it was probably already fairly aggressive and, with the sarcomatoid element, the most likely first area for metastsasis would be your lungs.  It's possible that mets would have been undetected, though present, at your nephrectomy and the level of aggressiveness would have led to visibility now.  If that turns out to be true, the good news would be that mets have been detected promptly, that they are treatable, that you are unlikely to have brain mets and that you are in the best of hands.

You have only one new mass that they know of. That is probably going to be the only one and it may not be RCC. However, if it is, it's not very large and lung mets are generally more successfully treatable than mets in other locations.

I hope you can go ahead and enjoy your family vacation with the conviction that even the worst news on Wednesday will be manageable and you have a long and healthy life ahead when whatever proves necessary has been carried out. 

Enjoy that break!

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Since neither my grandfather, father or I have none of the non-genetic risk factors for RCC, it is nearly certain that the cancer is genetic.  It is also likely that the causitive gene has not been discovered.  I think that is why NIH is particularly interested in my family (we are also have a BRCA1 deletion).  If the causitive gene can not be identified, she will have to begin scans at around 25, which is in 15 years.  I will talk to my daughter about what is going on with me on Wed evening, when I have the test results.  She probably will figure out the genetic component. 

When I look at the people surviving in this forum, it gives me hope.  I am still petrified.  I do not expect to get a lot of work done in the next two days.

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

I'm sorry my reply didn't afford you much comfort.  What are you so terrified about? You will die eventually, that's certain, but your chances of that being a long way ahead are very good.  Many of us here are more or less fully functional with immeasurably worse prospects than yours.  This is not a reproach, but a reassurance that things are not as bad as you are feeling right now.

It's great that NIH are involved and that your family history may prove helpful in advancing our knowledge but I believe you overstate it when you say your RCC is almost certainly genetic.  Have NIH said so? The vast majority of RCC cases have not been found to be genetic. 

Your family history certainly makes it appear more likely, but your reasoning overlooks the fact that innumerable victims of RCC have NONE of the known pre-disposing factors. (Myself, for instance, always an ideal bodyweight, non-smoker, no BP problem, never knowingly exposed to a toxic environment, life-long healthy lifestyle and diet and never really ill until RCC dx at 69. Many others can say the same.)

Try to focus on your work meantime, to stop yourself brooding.  Even if the results on Wednesday (which we hope will be good) turn out not to be what you would hope for, the situation can and will be dealt with.  Enjoy that vacation from Thursday and keep coming back here where there a lot of people ready and able to offer you support.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Three generations of cancer means it is most certainly genetic.  Approximately 4-6% of all RCC is genetic, but the causitive genes are not universily known.  There are 8 or so known relationships (e.g., Cowan's syndrom, Von Hipple).  But there are more that have not been identified.  In my case, there is a hypothesis that the RCC may be related to the BRCA1 and another recessive gene.  If that is the case, it may be really important.  Most work on the genetics focus on the dominant gene, as it is easier to track, but a receissive gene may be why some people, get it and some don't.  An Icelandic study (sorry, reference is home and I am at work) shows that in Iceland, there appears to be genetic links to more than half of all RCC (going from memory).

The inidcators that make you think genetics (according to NIH are):

1) Other close family members with RCC

2) Early onset (younger than 60 or so)

3) Multiple independent tumors (not mets)

4) Bi-lateral independent tumors

My grandfather had 3 & 4; my father has 1, and 3; I have 1 & 2, but I am still relatively young, and could end up with 3 and or 4.

 

Another way to look at it is, excluding genetics, the odds of RCC are 1:100.  The odds of an RCC patient having multiple tumors is about 1:100.  The odds of my dad and grandfather having both is 1 in 100*100*100*100, or 1 in 100,000,000.  Add me to the mix,  with early onset, it becomes 1:50,000,000,000, or we are unique in human history. 

Throw a dominant genetic cause into the mix, and the odds go to 1 in 4.  (grandfather has the gene, 50:50 that he passes it to my dad, 50:50 he passes it to me).

S

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

David, you haven't exactly made it easy to follow your train of thought. You said that it was your own opinion that your RCC is genetic and your justification for thinking so was that none of your Family exhibited known risk factors for RCC.

Incidentally, a while ago I raised the question of whether a toxin in your environment might be responsible for RCC in your Grandfather, Father and yourself.  Have you all been in the same location for some periods of your lives? If so, could that not explain all of the criteria mentioned by NIH as suggesting a genetic factor?

Those speculations aside, if the explanation is a genetic one, what are the full implications for your Daughter?  Are there any precautions that NIH can recommend for trying to head off her succumbing to RCC?

It would also be interesting to know how similar the histologies of each of your family members were. Do you know if yours and your Father's are identical?  I'm not surprised that NIH are keen to follow up on your family - all very interesting.

If/when you have the time, I'd be interested in having your evaluation, as a computational scientist, of some abstracts I've read lately about recent developments in evolutionary biology with a bearing on the development of cancer malignancy. 

Still hoping for good news on Wednesday and that you'll enjoy the subsequent vacation.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

The NIH medical staff are confident that the cancers are genetic.  As the causitive gene (or genes) have not been identified, it is a hypothesis, not a certainty.  However, the set of three generations with low probablilty symptons makes it extremely unlikely that there is not a common cause.  Of course, environement could be one, but I never lived at the same placeas my grandfather.  I visited probably a total of three months of my life. The other common link is genetics.  Thus NIH scientists think that the cause is genetics.

As for my daughter, if a causitive gene is identified, she can be tested for the gene.  Otherwise, the advice is to start scans when she is about 30.  there is minimal risk right now.  She will be told when it is appropriate, either aroud her 21st birthday or if she starts asking questions, sooner.  I expect she will make the link between my dad, her and me very soon.

There has been a lot of luck involved in the discovery.  My primary care physician did not understand the genetic risks (even when I asked, based on my dad and his dad).  However, the original tumor showed up on a CT scan done to rule out appenix issues.  Had that not happened, the first symptom probably would have been too late.  I am also lucky that NIH is interested in me and my family, as I will probably get better care there than anywhere else.

Also, here is an artical indicating that the genetic component is significantly higher than one would think:

http://onlinelibrary.wiley.com/doi/10.1002/ijc.10513/full

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

Thanks for going to the trouble of looking out that article which I've only skimmed through so far but which is interesting.  The dramatically higher incidence of RCC in Iceland is fascinating and also the high rate in Scandinavia generally.  One wonders how important the small gene pool may be. 

However, I suspect that there are some tacit assumptions in the conclusion that may prove to be invalid.  I notice that the paper dates back to 2002, so I wonder whether there have been follow-ups to it in the literature that show confirmation - do you happen to know?  The other obvious question is what significance your experts at NIH accord to it.  Are they persuaded as to its validity?  Since it seems to run counter to what has been found to be the case in other, much larger, populations, it seems unsafe to generalise from the Icelandic findings and maybe advisable to dig deeper for the explanation of this apparently anomalous data.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Dr. Linehan at NIH is the one that told me about the study.  The thing is, that type of study requires history of blood lines, etc.  In most larger populations that does not exist. In Iceland, there is limited mobility, and the blood lines can be traced back 1400 years.  By comparison, my bloodline can only be traced back to about 140 years.  In addition, Iceland has a single payer health care system without the HIPAA regulations, so they can get large scale samples of blood, with the known lineage.  That allows them to do this type of study more accurately than just about anywhere else in the world.  Or at least, that is my understanding based on what the Dr.'s at NIH told me.

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Hi DavidS,

It seems we are on a similar path. I have 2 lung masses (#1 is 1.2 X 1.4 cm and #2 is .8 cm) discovered to be growing on my 2nd post-op CT.  I also was stage T1b and grade 4 (5% sarcomatoid) with a 5 cm mass on my right kidney.

Like Tex said, I believe these masses were there at the time of my nephrectomy and the aggresive nature of my cancer accounts for the growth in the past 6 months.

I visited my oncologist last week and we had a great discussion. I was very pleased with his knowledge of RCC. We discussed IL-2, all of the current drugs, the MDX-1106 trials and many other areas. He wants to be sure it is RCC before proceeding with treatment. He thinks it is but he said he has been fooled before.

He wanted to do a biopsy but was turned down because they say the mass is too small for accurate biopsy. So, I'm now waiting for an appointment with a thoracic surgeon to see what he says about removing the larger mass (or both) for pathology.

I'm interested to hear what your doctor recommends. You're very lucky to have access to NIH. I'm in Mississippi and I'm being treated at the University of Alabama at Birmingham, a 2 1/2 hour drive for me.

Hang in there. I'm a little anxious, but not freaking out. Try to keep things as normal as possible and stay busy. I'm still cycling and enjoying all of the things I love about this big old goofy world. Take care and please let me know what your doctor recommends.

Thinking of you, David

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

David, glad to hear you're carrying on coping well.  Amazing that, aside from your names, you have such similar pathologies and the timings of your experiences!  Comparing notes might be of great value to both of you.

By the way, there's a very active discussion going on among a number of patients and other well-informed parties currently on KIDNEY_ONC.

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

TW,

Thanks for the mention of the Kidney_ONC discussion. I have it set up but I haven't been there in a couple of days. It gets heavy over there sometimes and I have to take a break! I did go over and read the messages. Thanks and I hope you're doing well.

--David

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

The PET scan indicates the growth is probably malignant.  The morphology of the tumor suggests it is more likely a primary tumor than a met -- that is actually good, apparently.  NIH will biopsy the mass sometime next week (needs to be scheduled still).  Surgery is scheduled for Feb 5. 

 

Maybe I should take up sky diving.

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

First get the tumor out. Second, bag the sky diving. Get a Harley.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

While on vacation, I can have fun. 

And I want to buy a sports car.  But, I will wait till after surgery.

No Harley...thought about it, but I will kill myself.  I am in touch with my inner klutz.

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

Well, you succeeded in "muddling through" and got the results I, for one,  expected but it isn't the end of the world.  You're right that it's better this is the primary and not a met from some yet undiscovered primary.  

Now you have a plan and can go enjoy that family vacation. Fox's deft touch has shown us that even though you were so worried your sense of humour is still unimpaired.  I feel sure you'll come out of this fine and this will be just one of many family vacations you'll be enjoying in the future.

 

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Good to know you have a plan and you're moving forward with it. I have my PET scan next week.

Since the Harley is a no-go, I say get a bike!  Enjoy your vacation.

--David

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

FIVE RULES TO REMEMBER IN LIFE

1. Money can not buy happiness, but it's more comfortable to cry in a Corvette than on a bicycle.

2. Forgive your enemy, but remember the ass-hole's name.

3. If you help someone when they're in trouble, they will remember you when they're in trouble again.

4. Many people are alive only because it's illegal to shoot them.

5. Alcohol does not solve any problems, but then neither does milk.

 

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

So dhs,

You are saying you thought about both and passed on the harley because it's too dangerous? More dangerous than sky diving?  I'll have to research that (because that's the way I am).

I would feel safer riding on the back of a harley when a tire blows out going 50 miles an hour on a highway with traffic.

Ask me how I know that.

 

I would like to hear from someone that survived a mishap when sky diving.

 

I'll take the harley any day!

 

Kathy

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Yesterday, I had the biopsy on the lung mass.  I can tell you that there are nerves in the mass.  The technician unoffically told me that it shows abnormal cells, it is not an infection, and it looks like renal cells.  

When I went into for the biopsy, I had hoped (unlikely) that it was a latent infection.  The thorasic surgeon thought that the morphology of the mass suggested a primary lung cancer.  But, it looks like it is a lung met, measuring 3.1x1.5.x1 cm.  

I am lucky, in that it is a signle met.  I am also lucky in that I have the best 10yo daughter in the world (in my humble opinion).  

I will learn more about the plans next week.  Surgery will be Feb 5.  

For today, my attitidue is bacon cursed cancer. 

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Waiting is hard! I'm glad you're moving forward. Did they do a needle biopsy on the mass?

I've been told my nodules are too small to needle biopsy, so I'm wondering what they'll do.  I have my PET scan this Thursday and meet with the thoracic surgeon the following Thursday. I guess I'll learn his plan then. I like most people here understand waiting.

Take care, wishing you the best.

--David

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Yes, they did a needple biopsy.  I can understand how small nodules might not be biopsied, after talking to the medical staff.  Basically, they have a path that has some uncertainty, about 1 cm.  So, if the nodule is too small, they can easily miss it.  In the risk-reward, the Biopsy does not make sense for small masses.  

 

My mass was larger, about the size of a thumb.  

Now, I am just taking it easy for recoveing from the biopsy.  Next week, I get the plan.  Surgery is already scheduled.  

Good luck with your lung nodules.  Sometimes it sucks to be a David

David

 

 

 

 

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