Sarcomatoid

NanaLou said:

Size of tumor
I don't know much about my path report. I do know it was 11cm and a grade 3. Other than that I don't know. What I have read on Sarcomatoid does not sound good. So I guess I should stop reading. Just looking for something postive.

I wish you the best.

Nancy

Texas_wedge said:

Sarcomatoid
I hope everyone had a pleasant festive season. This is a rare manifestation of cancer but there are many victims and much research both done and continuing. Agreed that you can get despondent reading about it. However, we can speed up our learning by pooling our resources here. It may be a little too soon for members here to have squeezed out all of the advice they will be getting from their medical advisers but maybe, in due course, it will be possible to gather here the various evaluations, recommendations for treatment and the arguments and evidence supporting the advice we are offered?

Rae was right in saying that the jury still seems to be out on the exact nature of sarcomatous cancer cells. The best paper I've found on the topic explains that whereas cells normally develop into specialised entities with a dedicated function, sarcomatoid cells appear to be ones that have been specialised but have regressed to a more primitive, embryonic form and so are no longer classifiable. All of this may be academic but it becomes important if it suggests good lines to follow in looking for better treatments.

Foxy has provided the perfect template for handling our situation - informed, realistic but positive and always able to maintain a sense of humour. I intend to follow his example and go on the attack at once. I've already ordered the Maars program which John has mentioned in these threads and on KIDNEY-ONC as being of great value to him. I was further encouraged to go for this after reading a paper published last year in "Psychiatry Research: Neuroimaging" which found significant changes in the brain resulting from "Mindfulness meditation".

I'm issuing requests for help in focusing on promising treatment options and any possible relevant clinical trials. Unappetising though the prognosis is, there are quite a few grounds for being positive. (I've always seen the half-empty glass as at least three-quarters full, doubtless helped by my being Upside Down). The very fact that we're here is an immediate plus, both because of the shared support and because the mere fact of returning here speaks to our commitment to act for our own benefit and that of others.

I dare say you've all read some bits by the late, great Steve Dunn at:

http://cancerguide.org/rcc_subtypes.html

A very worthwhile and inspiring piece he recommended, for good reason, is The Median Isn't the Message by Stephen Jay Gould which he reproduced at

http://cancerguide.org/median_not_msg.html

and which should be essential reading for all of us! It's beautifully written and very scholarly and may be rather hard going for some of us. The key point is that he was diagnosed with a rare cancer which was considered incurable and had a median life expectancy of 8 months from diagnosis but understood enough about statistics not to be flattened by that information. H emphasises a positive attitude and sense of humour. He lived another 20 years (not months!) and died of a different disease.

Texas_wedge said:

The Median Isn't the Message
Glad you enjoyed it Gary. Funnily enough I was wanting your opinion of an article on which I'm in correspondence with the author who was/is (I must ask him) in the U. of Michigan Med. School. I thought it was exactly what I was looking for when I found it but I'd appreciate benefit of your engineer's brain being brought to bear on it. It's entitled "The Mathematical Relationship between Heart Rate, Cardiac Output and Pulse Pressure in the Human Systemic Vasculature." Let me know if you don't get it here:

http://www.scribd.com/doc/35795122/The-Mathematical-Relationship-Between-Heart-Rate-Cardiac-Output-and-Pulse-Pressure-in-the-Human-Systemic-Vasculature

I'm hoping my sword and shield are up to the job. I don't feel it's yet time for me to shuffle off this mortal coil. I won't get the full picture until a week or so into Feb. when the chips will be down and I anticipate my urologist will refer me to an appropriate oncologist. Fortunately the hospital is world renowned for cancer care but that doesn't mean they are expert in this particular problematic area.

NanaLou said:

Thank you
I read the Stephen Jay Gould message. It was just what I needed. My 1st folllow up scan is tomorrow. I am doing pretty good. But I have started to get what I call the (Cancer Crazies). I think we all have them. It is where you think every little pain (you have had your whole life)is the spread of cancer. Yesterday I miss dialed a number twice in a row. And, the silly thought it had spread to my brain popped up.LOL I have only misdialed phone numbers a million times in my life. I do try to stay positive as much as possible. Sometimes it is hard. I do believe that attitude is everything! I did have a herbal tea suggested to me. I have not gotten any yet, but you might want to check it out. I believe it is spelled Essiac.

Texas_wedge said:

Latest on sarcomatoid RCC
The current issue of the Oncologist has an 8 page paper, current as of February 14 2012, entitled
"Sarcomatoid Renal Cell Carcinoma: A Comprehensive Review of the Biology and Current Treatment Strategies" emanating from Bethesda.
It's not really a fun read and largely confirms a good deal of what we think we already know.

The Abstract narrates: "Recent advancements in the molecular characterization of renal cell carcinoma altered the classification system and now kidney cancer is divided into several distinct histologic subtypes. Although once a separate histologic category, sarcomatoid renal cell carcinoma is no longer considered a separate tumor type because it can occur with all histologic subtypes. Limited research on tumors with sarcomatoid change has led to minimal progress in the understanding and treatment of these tumors. Because the sarcomatoid variant of renal cell carcinoma can account for approximately one in six cases of advanced kidney cancer, we hope to familiarize clinicians with these tumors by describing the historic background, histologic features, molecular characterization, diagnosis, prognosis, treatment strategies, and active clinical trials of this aggressive type of tumor.TheOncologist2012;17:46–54"

One reason for uncertainty in treating sarcomatoid RCC is that it is still little understood "anticancer agents now focus on the dysfunctional cellular biology rather than as in the prior era of nonspecific immunotherapy or chemotherapeutic agents. However, one specific RCC entity, sarcomatoid RCC (sRCC), remains to be fully characterized". There seems some indication that chromophobe RCC more frequently turns sarcomatoid then papillary or clear cell. The occurrence of sRCC cells in Fuhrman grades 1 and 2 has apparently fuelled speculation that this pattern may result from activation of a separate sarcomatoid stem cell within the tumour.

The general thrust seems to be towards immunochemotherapy combinations. Gemcitabine and doxorubicin (Adriamycin) has had some successes, as has sorafenib (Nexavar). Some indications are for further exploration of antiangiogenic therapy for sRCC.

Texas_wedge said:

Catch-up
Nancy, Rae, djc2, how are you doing? Sarcomatous transformation is a game changer and it seems a good idea for us to stay in touch and compare notes.

From 9cm. radical nephrectomy, stage 4 grade 4 predominantly sarcomatoid and extensively necrotic, I had an immediate 'recurrence' (?) in the renal bed and, consequently, a second op at the end of March. So far, it appears that I've had no distant mets at any time (but banking on that is never wise) whih seems unusually lucky. Constant monitoring but no adjuvant treatment is envisaged for me and the proof of the pudding will be in the eating.

How have otheres in this boat been faring on their treatment, whatever that happens to be? The more we can learn, the better for us all.

Texas_wedge said:

catch up
Thanks for the further update. I hope your unusual record will serve as a cautionary tale for others with very small but highly aggressive tumours. I'm delighted to hear how you're winning and I look forward to hearing of another clear scan in October - I'm sure your inference is correct and that it's well-justified on his part.

That's two good stories. i hope we get equally good news from Nancy and Rae.