Sarcomatoid

DMike said:

Sarcomatoid Article
Interesting article on sarcomatoid RCC from a radiology perspective. There is even an interactive section to scroll through a CT scan like we've all seen. Maybe, with a few viewings,it will help me understand when my doctor scrolls though my scan.--David

http://www.radiolopolis.com/index.php/radiology-journal-radiology-case-reports-radiology-review-articles.html?id=976

ourfriendjohn said:

The few, the proud
Amen Tex,

Those of us with sarcomatoid issues need to hang-out together. I met with an oncologist for the first time yesterday. I put more details under Bruce's post. The oncologist took the time to slowly go through my pre and post op scans and explain what I was seeing. I can't believe my good fortune of finding a doctor who is so interactive.

John

David, thanks for the link to scan interpretation.

Texas_wedge said:

Interpretation
And now we have Jeff as well things are looking up more than ever.

alice124 said:

Mike
Great post David!!! Congratulations on the NED.

And great dialogue for Clare and her sister-in-law. Clare, I admire your trying to help a reluctant sister-in-law. You don't sound like one to give up; don't let her do so either. Good luck.

Texas_wedge said:

Clara's SIL
Clara, I was happy to read your statement that your SIL is feeling well at the moment but a little concerned about her mindset, nonetheless. Even if she's highly intelligent, it's possible that she's falling into too resigned an attitude because she's recognised that her prognosis isn't as good as that of many of the contributors here. I hope I'm mistaken and she's actually taking a realistic but balanced view of her life.

Your degustation schedule sounds just the ticket and great fun for both of you, but you say that she doesn't go out much anymore, and has little apparent interest in her treatment. You also say that she takes no exercise (not a good idea, even though you guess her BMI at about 20, which means she is slender, with no obesity-related problems - please confirm). Is she under treatment for depression? If not, might there be a case for her getting help? Depression is an almost inevitable concomitant of cancer (held at bay to some degree by some of us by exercise) and always merits exploration and help whether that be medication or talking therapies like CBT, CAT, or whatever.

Is she receiving SRS or some other form of treatment for the lytic sacral lesion? Fox may have some useful thoughts on that subject.

Your SIL and Fox, and Alice's John, and myself are all stage 4 grade 4, with more or less sarcomatoid change (not too sure about Fox on this parameter - ?) and the rest of us are all fighters. I hope she can draw strength from the rest of us, as we do from each other.

A main concern for me is retroperitoneal lymphadenopathy, just like your SIL and we need to remember that it may, OR MAY NOT, be sinister. I'm suffering increasing discomfort at present and my case isn't to be discussed in detail for another week but that involves a different issue, where further surgery is imminent. The PET/CT scan I had on Thursday won't, I gather, throw any further light on the cause of the lymphadenopathy but I suppose it will reveal whether there has been further enlargement. Perhaps we can continue to compare notes on this topic?

Have you ventured onto KIDNEY-ONC lately? There has been a spate of very interesting contributions from your antipodean (as seen from UK!) fellow-countrymen. There are some important debates being had there and there's a lot of detailed and up-to-date info to be gleaned.

Keep enjoying those gourmet outings and please wish your dear SIL well from me.

Texas_wedge said:

Treatment
Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

Texas_wedge said:

Treatment
Clara, thanks for that well-considered reply. My feeling is that a good pyschologist, rather than a psychiatrist, might have been the first port of call and that cognitive restructuring rather than a chemical intervention by SSRI or SNRI was the best bet for effective help. However, I have to respect the conclusion you've reached, which accords with the philosophy that my own Wife has endeavoured to communicate in teaching psychology to medical students, in a psychiatry dept. and which also underpins the independent advocacy movement in which I am involved - ultimately respect for the self-determination of each individual.

You've asked about my current circumstances. I had a call from my urologist this afternoon and also from my GP this evening. My PET/CT scan on Thursday was more revealing than anticipated and the outcome is not very palatable. We Brits have a predilection for understatement so it wasn't difficult to read between the lines when my Consultant said that the new recurrence in my abdomen "has grown a bit". It explains my increasing discomfort to learn that the new tumour has grown from 2.5cm to 5cm in 3 weeks (ssy, for the sake of round numbers, about a hundred times faster than the average case). There are other signs of activity that suggest that I may have actually been metastatic even before the original dx, but undetectably so.

I was looking forward to a third op asap before it gets worse so it's a blow that the team considers that I've reached the end of the surgery road. My next meeting will be with one of the renal oncologists to discuss whether there's any systemic therapy that might prove useful. I don't suppose I need say that that can't happen soon enough for me and I'm somewhat apprehensive about how I'm going to deal with an exploding recurrence for which there's no surgical option. My Wife, who's been a little bit weepy, likes to look on the bright side and has cheered me up with the thought that at least I'm unlikely to be around long enough to get Alzheimer's.

Texas_wedge said:

What's coming
Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

Best wishes to your Mom.

Texas_wedge said:

What's coming
Thanks Angie and I don't intend to let the attitude slip and you can assure your Mom of that. You're right about Fox - I've also been a bit worried about him and Alzheimer's ;-) (However, on the whole, I'd much rather have cancer than dementia. Eliezer's joke for me comes to mind with something of a shudder of apprehension; it was funny, but then, maybe not entirely!)

I'm at a great hospital with a fine system of care so they will be ideal in helping us accommodate with a suitable balance of optimism and realism. (My prognosis is now off the charts of the nomograms - I guess on my parameters their assumption is that I'm already dead - but you know my opinion of their inutility for individual patients.)

Regarding dx, it's not really surprising and bears out the Fool's Paradise hypothesis. You'll see on KIDNEY-ONC that even the best scans constantly miss things, partly because reading the images calls for considerable expertise and partly because radiologists can miss things simply because they're looking for something different. The explanation in my case is probably an even more straightforward one, viz my pathology is now so aggressive
that a lesion that's likely to prove rapidly fatal was undetectably small just a few months earlier. My dx was less than a year ago and since then it's been a highly eventful year, so far, with lots of "progress". My lymph nodes are now lighting up (and me a non-smoker too!) which indicates that in addition to the direct spread which we hoped accounted for my 2 recurrences to date, there is also infection in my lymphatic system, quite possibly pre-dating my dx. Carrying on with just cutting things out would be naive in view of the likelihood that I'm now at serious risk of distant mets anywhere and everywhere, which prospect calls for deploying any systemic treatment that might be helpful in allowing me to establish a modus vivendi with The Crab.

Meantime, I'm about to see my GP, then going to Aberdeen for remedial work on an Apple iMac. I had a great game of golf yesterday - hitting a new driver really well. Tomorrow I'm going to Edinburgh to attend an important high court case and then I'll be marshalling at the Dunhill Links for 3 days, following which I might be able to get 3 consecutive days of golf, all depending on the availability of a slot with the renal oncologist! So, yes, I'll be playing this week, one way or another.

Best wishes to your Mom.

garym said:

Understatement...
T,

Not often in my life have I found myself at a loss for words, this is one of those times. Your wife is not alone in the weepy department as I find myself choked with emotion. You are one of the most informed and determined people I have NEVER met, but knowledge can be both a blessing and a curse. I suspect that the predilection for understatement applies to you as well and that you have been shielding us a bit as things have progressed, if this is true please don't hold anything back, you are entrenched in our lives so deeply that you are more than a friend. I have an enormous amount of respect for you and the star of this board you have become, if it is possible to love someone that you could pass on the street without notice then that's how I feel. I do not know what is in store for you as this battle continues, but I know it will be fought with honor and grace. I pray for an outcome that warms our hearts for years to come, but should your destiny follow a different path I know in my heart that this too will be walked with head held high.

Godspeed my friend,

Gary