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Sarcomatoid

NanaLou
Posts: 68
Joined: Oct 2011

Had my following up with oncologist yesterday. I do not qualify for any trials,because they were for clear cell cancers only. Mine is Sarcomatoid. He said this is an agressive cancer. We will keep a close eye on it. My first scan will be next month followed by another in 4 months then go to 6 months. There is a 50/50 chance it will never return. Not the numbers I hoped for, he told me to look at it as the glass is half full not half empty. Do any of you have this type? Can you tell me anything about it?

Merry Christmas to you All!!!

Nancy

djc2
Posts: 17
Joined: Nov 2011

Hi NanaLou,

I have what they are calling clear cell renal cell carcinoma with Sacomatoid and Rhabdoid features. Some things I have read suggest this is the same as Sarcomatoid rcc. In any case it is Grade IV and agressive, like yours. My surgery was successful, margins clear and no evidence of metastasis. My three month CT scan showed no clear evidence of metastasis anywhere. I will see an oncologist tomorrow and hope to gain some more perspective. Truth is I don't think there are too many of us out here and I've been having a hard time getting much clear information. Can you tell me how large your tumor was and any details about your pathology report? I will share with you what my oncologist says after tomorrow. There is a movie out called 50-50, based on a real case of someone who got an unusual form of cancer...After many years, he's doing fine. Keep your faith; there are many worse prognoses! All the best wishes to you.

NanaLou
Posts: 68
Joined: Oct 2011

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

djc2
Posts: 17
Joined: Nov 2011

Hi Nancy,
I had my visit with the oncologist today. He says my tumor was a clear cell type with 50% sarcomatoid features. Is it possible yours is one of the regular types with sarcomatoid features too? My oncologist is optimistic since the tumor was small, even though much of it was sacomatoid. I would re-read your path report carefully to be sure and if you have any questions ask your oncologist again.
I found another web site which may have some more information for you, It is rare-cancer.org, but, honestly, you may be right that too much reading doesn't help. We would proably both be better off forgetting about the odds and trying to enjoy our lives! I hope you have a great holday season. My best wishes to you.

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rae_rae
Posts: 266
Joined: Oct 2010

Nancy,
I was told my tumor was clear cell with some sarcomatoid features. It was explained to me that it was more aggressive (the original CT scan before surgery they believed it to be grade four, path results grade three). Everything I've read has a differing opinion such as clear cell progressing to sarcomatoid or is sarcomatoid its own type of cancer.

I agree with the advice of living life without worry. Be vigilant but live freely.
Merry Christmas
Rae

NanaLou
Posts: 68
Joined: Oct 2011

I will have to get my path report. I have read some of the same things Rae Rae. I have had a better day today. It is funny how one day you can be so down and the next you are ready to fight. This is a funny roller coaster I am on. I hope you two have a great Christmas. I am going to try not to worry about this Cancer for a few days at least. I have a four year old who is worried about Santa Claus coming. Which makes it all worth it.

Merry Christmas,

Nancy

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Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

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garym
Posts: 1651
Joined: Nov 2009

T,

I just read The Median Isn't The Message and loved it, thanks for the recommendation. I have also looked into the Maars program a bit, thanks to Jon, and I am considering ordering it even though my fight with cancer is currently at a truce, I'll be very interested in your intellectual opinion of it. It may also have a beneficial effect on your golf game, a nassau or two and you'll have your purchase price back.

I'm so glad that you have picked up your sword and shield and are preparing to do battle, I was sure you would bounce back more fierce than ever, a true Fighting Scot, much like Mr. Gould. With your attitude and sense of humor I expect you'll still be "knockin' it about" in twenty years too.

Keep smiling,

Gary

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Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

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garym
Posts: 1651
Joined: Nov 2009

I'll check it out, your capacity for research is astounding!

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Texas_wedge
Posts: 2807
Joined: Nov 2011

http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-sarcomatoid-renal-cancer

Contains a very brief outline, maybe useful for someone who hasn't delved into this enough to know it all already.

NanaLou
Posts: 68
Joined: Oct 2011

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.

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Texas_wedge
Posts: 2807
Joined: Nov 2011

NanaLou, I'm so glad that you enjoyed that inspirational piece by Stephen Jay Gould and that the timing was so handy for you. We all know what you mean about anxiety that is probably unjustified (although staying vigilant is wise, nonetheless). I've suddenly got a tender spot over my ribs and can't think when I've knocked myself or leant badly on something, so I'll watch that space.

I intend to re-stock on green tea this afternoon and will maybe investigate the Essiac as well, starting with http://www.whale.to/a/mccain1.html.

I do hope you get good news from your first follow-up scan tomorrow and can breathe a deep sigh of relief. Keep up the positive attitude anyway - we've seen how much it's helped so many people to tip the odds strongly in their favour.

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garym
Posts: 1651
Joined: Nov 2009

NanaLou,

Just wanted to say good luck tomorrow and add that yes we all get the Cancer Crazies prior to follow ups. It does subside a bit over time, but I doubt it will ever go away completely.

Praying for NED,

Gary

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Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

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Texas_wedge
Posts: 2807
Joined: Nov 2011

[For general info. to other posters sending long messages, I tried in vain, on and off all day to submit this posting. I was able to make a shorter posting meantime so figured the length was the problem (maybe exacerbated by the software having trouble with the standard abbreviation of sarcomatoid RCC - hence the ****C ).

(continued):

As we know, most clinical trials are for clear cell. For sRCC there appear to be current trials of sunitinib (Sutent)with gemcitabine at Dana Farber and Beth Israel; bevacizumab (Avastin) + capecitabine + gemcitabine at MDAnderson; sunitinib (Sutent) with or without gemcitabine at ECOG.

The bottom line is found in the final sentence of the Conclusion:

"There may be a role for combination chemotherapy with antiangiogenic therapy in sRCC treatment, but the ultimate improvement will come from better molecular and genetic characterization of sRCC and design of specific therapies."

This verifies for me the advice given by Jerry White to hang on tenaciously to the best life possible with the positive expectation that better therapies are just around the corner. For me this means plenty of exercise, good diet and social communication, in my case supplemented by the MAARS program and TM. It also helps to look for the funny side wherever possible - milkduds, furballs and the like!! In our situation I feel even non-pc humour is permissible, e.g. my golf-match playing partner yesterday said he's asked for Viagra in a drugstore; the pharmacist said "Do you have a medical certificate?" "No, but I have a picture of my wife."

Got to keep the spirits up (but down only in moderation).

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Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

djc2
Posts: 17
Joined: Nov 2011

Thanks for keeping us together, Texas_wedge. I am very happy to read of your success removing the "reoccurance" and optimistic that they have now gotten the rest of this disease out of your body. With agressively growing tumors like ours, no matter what stage, grade and other characteristics, it stands to reason additional "reoccurances" would manifest quickly. Each additional day we go after that without evidence of disease therefore is a very positive marker. While this is a tricky disease, I think you have reason to be optimistic.

I posted my status recently on another thread, but will reiterate here. You may recall, I had an unusual "pygmy shrew" of a tumor (as you called it)---1.8 cm clear cell, 50% sarcomatoid. It was removed in a partial nephrectomy in August of 2011. I recently had my third, three-month scan and was told "to the best of our knowledge you are cancer free." My doctor suggested my next scan be around October (about 5 months, rather than three) which, one can infer, indicates he is gaining confidence. I still have heard of no other rcc so small which has turned significantly sarcomatoid, apparently so quickly...but it is a good reminder about how quirky this disease can be.

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Texas_wedge
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Joined: Nov 2011

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.

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Olsera
Posts: 38
Joined: Dec 2011

I am glad you have both received clear scans & hope you both continue to receive NED.

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks, Olsera, and long may you continue to 'not sweat the small stuff' and to celebrate your new-found appreciation of all the good things life has to offer.

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ourfriendjohn
Posts: 72
Joined: Jun 2012

Althought this is my first posting, I have followed the site for several months and consider many here to already be friends.

I had a radical nephrectomy in September (9-7-11)at Northside Atlanta. The tumor was 17.5cm (and I am not a large guy). Pathology showed T2b N0 M0 but grade 4 with sarcomatoid features. I had a follow-up set of MRI's in April which are clear. My urologist seems optimistic saying there is only a 20-30% chance of recurrance since he thinks he "got it all". I am obviously concerned about it more than the doctor and am probably reading too much on the internet that I don't have the knowledge to fully comprehend. The leads that all of you have provided are really helpful.

Thanks to all of you for being there. It is nice to know that I am sharing this experience with others.

John

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Limelife50
Posts: 411
Joined: Nov 2011

Would you please explain that pic ,maybe i am wrong but is that the olympic torch

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Texas_wedge
Posts: 2807
Joined: Nov 2011

That was the Olympic Torch arriving at the Carnoustie Golf Club. You've also saved me from the otherwise inevitable quips from Gary and Fox - 'Do you really look that young?' or, more probably, 'Is the torch-bearer your great grandson?'

On Monday I emailed the UK's leading expert on exercise for cancer patients to arrange to meet for a chat (she's offered to comment on my current exercise programme and I want to pick her brains on the mechanisms by which exercise helps to combat cancer). She wrote back that she wouldn't be available before Wednesday because on Tuesday she was running with the Olympic Torch and then going to be interviewed at Scone Palace for a radio broadcast. I thought that was a pretty lame excuse but I let it go ;-)

On Tuesday evening I won a singles match in a knockout tournament being played on the Carnoustie Championship Course. There are 5 clubs at Carnoustie, based around the 3 courses there and I'm a member of a couple of them. I was on my way in to the Carnoustie G.C. to put my name through in the competition when I saw a large celebratory crowd outside with wine-glasses in their hands. I figured it might be connected with the Club Championship but it all seemed a bit extravagant for that. Then a piper struck up a fine bit of music and people began to disappear inside. I noticed a car in the road right at the entrance path to the Clubhouse and saw a chap get in to move it. So, I approached his car and asked what the event was. He proudly announced "My Father has just carried the Olympic Torch into the Club!"

So, I went on in, past the lad who was holding the torch and decided to take a snap with my iPhone camera. Amusingly, after a 4-ball there the following morning, 2 of my playing partners enthusiastically showed me pics and videos they'd taken the previous day. Each of them had driven into our County Town (Forfar) to see the Torch progress and take photos, unaware that the Torch was to come down through the County to Carnoustie. So, I was able to produce my 'phone and say "Nice pictures, and here it is in the Club last night!"

I hope your recovery continues well and that your Family is suitably proud of the way you gritted your teeth and bounced back. Clearly you're still sharp enough to have been the first to identify the Torch!

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foxhd
Posts: 1897
Joined: Oct 2011

...enough said.

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garym
Posts: 1651
Joined: Nov 2009

Actually I thought the guy in the background was the real you...LOL

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Improbable with the procreation patterns in my family history - my grandfather was born in 1841 and on the family pattern any great, great grandson of mine won't be born until 2094 so won't attain the age in the photo before the 22nd century.

Re the guy in the background, I thought I'd headed that one off by stating that I took the photo myself!

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Texas_wedge
Posts: 2807
Joined: Nov 2011

See what you've done - got me stuttering :)

NanaLou
Posts: 68
Joined: Oct 2011

I am still here a fighting. I am still on the Sutent. I went to the Dr Friday for blood work. Everything is looking good. I will have a scan done at the end of July. My last scan was in April, where I showed about a 50% shrink in the tumors. My oncologist still would like to try the inteluakin at some point. He says it is the only cure. I asked him about MDX-1106. He said I was on the list. But they were taking no new cases in the trial right now. Right now it was for people with mets to manger organs. Mine is in the lymph nodes where my Kidney use to be. So for now we stay on the Sutent unitl we reach a platue. Then we hit it with the interleukin.( And pray it works).

Nephrectomy November 18,2011
11 Cm , 95% sarcomatoid, T2b, staging III (The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has conventional clear cell features.)
reoccurence January 21,2012 several lymph nodes
shurnk 50% April 6,2012

I am still working although some days are better than others. I am doing the best I can to stay positive. I laugh as much as I can and joke about all of this when possible.

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rae_rae
Posts: 266
Joined: Oct 2010

They say laughter is the best medicine! Glad to hear you are doing well and keeping a positive attitude! Here's to more humor and less tumor!

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for answering the roll call, ladies, and it's so good to hear from you. I'm sorry you still get pain along the incision line, Rae and that you have bad days, Nancy but we're all still here and making the most of our lives.

In our sarcomatoid versions of RCC the picture still seems unclear so I suppose I shouldn't be surprised at seeming disparities in classification. We have some highly anomalous cases in our little group. Dean had a 1.8 cm tumour which was, naturally, only stage 1 but already 50% sarcomatoid and hence classed as grade 4. On the other hand we have John with a 17.5 cm tumour (i.e. almost 1,000 times the volume of Dean's !!) but only stage 2b, although also grade 4 because of the sarcomatoid features.

Nancy had an 11 cm. tumour and, like John, was classified as 2b but 90% sarcomatoid, with rhabdoid features but only labelled grade 3!!! Rae had sarcomatoid features but, like Nancy, was classified as only grade 3.

I got labelled stage 4 with a 9 cm tumour because it had burst through Gerota's Fascia, which I presume everyone else here, fortunately, escaped (hence your lower stages) I'm also grade 4, so it seems we're all grade 3 or 4, due to the sarcomatoid factor. [I'm another anomaly since everyone else here is clear cell and I'm chromophobe. Chromophobe is automatically graded Fuhrman 4 but this is spurious since Fuhrman grading doesn't apply to the rarer sub-types of papillary and chromophobe. I'm awaiting finding out my grading under the new 'chromophobe tumor grading system'.]

Sarcomatoid is bad news which is why we're all grade 3 or 4 but, luckily, stage is generally much more important than grade in respect of survival which may be why we seem to be doing pretty well, since, apart from me, we're not stage 4.

We're all being treated differently and this reflects the remark made by Dean (in the "Fuhrman grade ... " thread):

"I believe each of us has a unique manifestation and response to this disease....one disease broken like light coming through the trees"

and it will be interesting to follow the outcomes of the different forms of treatment. I'm glad to hear that Nancy is doing so well on Sutent and will later be ready for a shot at IL2. But I'm disappointed that she can't get MDX-1106 so far, because it sounds as though it's having a roaring success in early appraisals and might benefit others in our group. Maybe this will soon change.

Meanwhile, all the best to everyone and let's keep this specialised thread going for the education of all of us as we continue to compare notes.

ClaraW
Posts: 64
Joined: Jun 2012

Dear All,

I am very thankful that I found this site and in particular this thread!!

My SIL was diagnosed with sarcomatoid RCC in Jan this year following 2 weeks of haematuria and mild right flank pain. When I took her to ER, the doctors thought she had a renal calculus however a non-contrast CT kidney/ureter/bladder showed a mass in her right kidney.

She had a nephrectomy within 5 weeks and histopathology reviewed sarcomatoid RCC with evidence of necrosis.

My SIL and I are inseparable, and we only live a block away from eachother. However since her diagnosis she has become quite withdrawn. She is not very proactive in her treatment and she won't even let me accompany her to her oncologist's appointment anymore. She tells me that she wants to give up.

I am extremely worried about her. I am trying to do some research regarding treatment options for sarcomatoid rcc.

Many thanks for any advice/guidance.

Kindest Regards,
Clara W

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Clara, what's behind your sister-in-law's change in behaviour? Maybe she's read up on this variant of rcc and has got the bad news? Perhaps she has an insensitive and brutally honest medical adviser?
Can you tell us a bit more - e.g. her age, BMI, general health, lifestyle (smoker? Diet, physical activity level, occupation, exposure to toxic chemicals in the environment, or at home) and anything else that could be relevant, ESP. Tumour size, stage, grade, underlying cell type(s) before the change to sarcomatoid and the percentage of the sarcomatoid component.

If you can answer some of these, we'll be better placed to rally round and help her to, in the words of one of our most highly-regarded contributors here (by me, at any rate) "regroup" and go after the disease and see it off. Do tell her that's possible and people are doing so all the time. Being in touch here is already a big step forward in improving the odds for a good outcome.

ClaraW
Posts: 64
Joined: Jun 2012

Some background history on my SIL:

Age 47, BMI (around 20 I think), fit, never smoked,social drinker, diet high in meat, worked as an accountant until last year.

In terms of her family history, the only relevant one I can think of is that her first degree cousin was born with polycystic kidneys.

Now, the tumour....

I saw the oncologist with her on her follow-up appointment after her surgery. My understanding is that her tumour was 6cm, mostly sarcomatoid but I don't recall the cell type prior to further de-differentiation.I have tried to ask my SIL but she did not want to talk about it. I remember her doctor said that the younger a person is, the more aggressive the tumour. I do know that her tumour is grade 4, stage 4 without evidence of distant metastasis.

I'm hoping that someone would shed light on adjuvant treatment after surgery. From my limited readings, I understand that currently there is no standard adjuvant chemotherapy for patients with non-metastatic Sarcomatoid RCC. However, only yesterday I heard about a clinical trial that is up and running in Australia (we live in Australia)in treating patients with non-metastatic rcc with sarcomatoid transformation. I haven't found much information yet but I will persevere. All I know is that the chemotherapeutic agent is another tyrosine kinase inhibitor. I will need to look up more re: which TK inhibitor it is and what the preliminary results are.

If anyone knows anything about such trials please shed some light. I feel there is some hope for my dear sister in law to do something about this disease before it spreads. I will post again when I have gathered more useful information.

Once again, thank you for your reply. Yes, lets try to improve the odds!

Kindest Regards,
C

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DMike
Posts: 238
Joined: Nov 2011

Clara,
I had a partial nephrectomy in December of 2011. My path report showed a 5cm tumor, stage T1b with a Fuhrman grade 4 due to 5% sarcomatoid features.

I just had my 6 month CT scans and there was no evidence of disease at this time. I will have to remain vigilant on my checkups and scans because of the aggressive nature of sarcomatoid tumors. My doctor reminded me again last week how lucky I was to have caught this sarcomatoid tumor early.

Your post shows how much you care for your sister-in-law. I hope you'll continue to urge her to keep close tabs on her RCC. I, as a survivor, appreciate family members and friends who genuinely care and show interest. They're the ones who realize that just because the surgery is over, we're not healed. There is so much more to this after surgery. Your sister-in-law is very lucky to have you!

Take care, David

PS - Good luck to your Cadel Evans and the other Aussies in this year's Tour de France!

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alice124
Posts: 860
Joined: Mar 2012

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.

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alice124
Posts: 860
Joined: Mar 2012

Think this is my second (or third) congrats on NED; but the other post(s) was addressed to Mike. Sorry

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DMike
Posts: 238
Joined: Nov 2011

Alice,
I can't receive too many congrats on NED!
--David (I'm David Michael, thus the DMike, a nickname)

ClaraW
Posts: 64
Joined: Jun 2012

My sister in law 's recent scan showed retroperitoneal lymphadenopathy and enlarging lytic lesions in her sacrum. She has declined all chemotherapy. She is comfortable and loves eating. I take her out to dinner three times a week. We have tasted all the degustation meals the restaurants have to offer within 10km radius of where we live.
I realised a short while back that this is not about me. I want aggressive treatment for her, be it surgical or chemoradiotherapy. I stayed up numerous nights worried about her lack of interest in her own treatment. I now have come to terms that it is quality of life that she wants and if she can live the way SHE wants, then she has my full support.
Thank you so much.
Kindest regards,
Clara

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Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

ClaraW
Posts: 64
Joined: Jun 2012

TW,

I couldn't agree with you more. I suspected my SIL's loss of interest and pessimism pointed towards depression with an obvious organic cause (cancer). We consulted a psychiatrist a few months ago who did not think she had clinical depression but prescribed a SNRI for her and also suggested that cognitive behaviour therapy may be more effective. She took the SNRI for a month with minimal effect (as predicted by the psychiatrist). If fact, I think the medication flattened her emotions in that she didn't feel sad or happy. She was reluctant to attend the CBT and the psychiatrist did not think she needed to persevere with it either. I guess, we have come to the conclusion that her decision was and still is informed, competent and voluntary.

We have all expressed our concerns, worries, pain on this website. On the contrary, you have always helped others, given us hope. Yet have hardly ever breathed a word about how you feel. You write that you are suffering increasing discomfort. I am very sorry to hear that TW. Is it causing you pain? flank? abdominal?

We are all thinking of you.

All the best,
C

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

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.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

There must be a point where alzheimers would be welcome for some. For you wedgie, I say cut the suckers out if that option opens up. I know you will get the best care.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Tex,

Not great news and you undoubtedly will have some difficult, important decisions to make. But believe my sincerity when I say I can't think of ANYONE more capable and informed to make the right choice(s). We all are in your corner; lean on us. In my thoughts and prayers,

Alice

angec's picture
angec
Posts: 621
Joined: Mar 2012

I am so sorry to hear about the new update. But please, don't even think there is a chance you will escape Alzheimer's! Take our dear FOX there! His case was much worse than yours and look how fabulous he is doing. His doctor already told him he will probably not die of RCC. TW...I forget what hospital you are seeking treatment with, I suspect it is a good one! But I urge you to get the treatments that you know are out there. Of course there is something that will prove useful for you! You have enough knowledge to know better than to think otherwise!

I am a bit confused that you say there may have been mets before the original dx. How could that have been missed? Was it due in part to the fact that they did not use a Pet/ct scan and just a regular scan?

I have faith that all will be ok. Please keep your spirits up and give the wife a big hug! Tell her my money is on Wedgie and she should get in on the bet that you will be just fine!

My prayers are with you and pray that God direct you and your doctors in your decision making next week. In the meantime, you will be playing this week yes?

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

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.

ClaraW
Posts: 64
Joined: Jun 2012

Your post upset me greatly, upon initial reading. The occult metastasis and the fast growing tumour is not very palatable. However, TW, if anyone is going to get cutting-edge, targetted treatment, it will be you. I know you will be getting the best medicine can offer! If anyone is going to respond to systemic treatment, it will be you. You are fit,have a healthy immune system, active and have a great state of mind. I am betting that your treatment will be very effective and that you will repond well!!!
Yours truely,
C

emkat
Posts: 21
Joined: Sep 2012

For what its worth...
When I joined this board a week ago, I shared what I found of your story with my husband. When I told him that you had had 3 surgeries this year, he was blown away. For him, he said surgery was the hardest thing he ever did (he's 38) and it would be a last option for him. He took a lot of strength from your story. He has been on xeloda, gemzar, and avastin for 9 cycles (21 days on, 7 days off) and has had great results with minimal side effects- (some hand/foot syndrome that is controlled by good lotion and socks, minimal fatigue) anyway, you have other options and they are still great options.
I wish you a speedy and boring recovery! Is your wife going with you on your trip? I hope you guys have a great time with lots of golf, laughter, and fun.

angec's picture
angec
Posts: 621
Joined: Mar 2012

TW and keep it going!

I know there will be systemic therapy for you and that sounds like it would be the best thing. Any chance of you getting MDX by you in the UK? I am not too sure what they offer at your end.

A few weeks back my Chiropractor was mashalling (calling wind shots - same thing?)the games that Tiger Woods had here along with many others, in Long Island, NY. He told me that there is a new driver that will let you hit the ball with so much accuracy you can do it with your eyes closed (not really :)as Tiger couldn't). So with you being an avid golfer, you must be doing fantastic!! Glad to hear that in spite of all the news you are still feeling reasonably well and going strong!

On a side note, i suffer greatly with Fibromyalgia and it puts me flat on my back with many different symptoms daily. So to say my hats are off to all of you going through this is an understatement. Makes me say i dare not complain about any of it. You are a trooper and I can't wait until you start treatment and we see those little guys clearing up.

Have yourself a great time this week and please keep us posted!! Hugs coming your way! Mom sends her regards, I have spoke to her about you and some others here on the boards. You all have become just like family ;)

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

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

angec's picture
angec
Posts: 621
Joined: Mar 2012

Ok, now I am in tears! That was very sweet! Let's all keep our prayers going and pray that TW is going to get the treatment that will help him. I know it is out there!

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