CSN Login
Members Online: 14

ccRcc diagnosed 08/03/2012

Joe_fh
Posts: 47
Joined: Aug 2012

Hello. I have been reading the posts here for a few weeks as I try to get a handle on this whole Renal Cell Carcinoma thing.

I was diagnosed August 3rd with a large mass on my left Kidney 10cm, and ever since then it's been a confusing ride of tests, guesses, and assumptions. I have been trying to learn everything I can about this disease. It's not looking pretty from the Internet reads.

It appears that the cancer is restricted to the renal area. The PET Scan came back only showing that left kidney. The Doctor "seemed" to be happy with that scan result, but to be honest, he does not say much.

They determined they need to get that sucker out of there, and I am scheduled for a radical kidney removal tomorrow morning 11:00 AM. As I understand it, the game plan is to do it with laproscopic surgery, unless a condition on the fly mandates open surgery.

Frankly I am terrified, but put on the "no problem face" in front of the kids. Being a single Dad is hard enough without this complication. Not sure if I am more worried for me or for them. Probably both.

Since Dads are not suppose to whine in front of their kids, I guess I am doing my whining on here.

Digger95
Posts: 59
Joined: Jun 2010

Joe,

Feel free to whine, *****, moan, complain, scream at the heavens, or whatever else you need to do. That's what we're here for! Good luck with the surgery tomorrow and be sure to check back when you can and let us know how you are doing. If they end up doing a full open surgery, just know that it was the best option for you and trust them to make the right decision. That's the surgery I had and I'm doing great twelve years out.

Ask any questions you need to... the folks on this forum are very caring and knowledgeable.

Jim

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

And here is a good place to do it. Good luck tomorrow. Take the pain meds on schedule, expect a couple of rough days. Start moving and taking on plenty of fluids as soon as is feasible. Report back here as soon as you feel up to it and collect your spurs. Not long now to have your Club membership confirmed.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Joe,

Hope things go smoothly. Know that you have a group of friends here who will be thinking of you and anxiously awaiting to hear from you afterwards. Like Texas_wedge said, get plenty of fluids and get moving as soon as possible. Welcome to the club.

John

Eliezer2
Posts: 58
Joined: Aug 2012

Since the discussion boards here sometimes carry jokes to keep the spirits up, I just thought I would share a really bad joke, one I was just told that might appeal to our warped sense of humor. I personally thought it was hilarious.

A man comes in to see his MD and the doc says I am afraid I have some bad news for you. You have both cancer and Alzheimer's Disease.

The patient replies, well at least I do not have cancer.

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

I hope its ok that I laughed too.

Kimmyanne
Posts: 21
Joined: Mar 2012

I came upon your post and was cracking up ty for the laugh, I think we all needed that...no matter the differences in our cancers ( I was dx with stage 3c ovarian cancer), cancer is cancer! Ty made my day!

love_of_my_life
Posts: 28
Joined: Jul 2012

My wife had the same surgery exactly one week ago. The first couple of days are tough, but not dreadful. I would say she is almost 60% today just a bit short on energy.

You are in our prayers and you WILL get through this. I know exactly how you are feeling and its very easy to get into a negative state. You have every right to whine BTW.

Tom

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

You've earned the right to be terrified and whiney, but you'll be fine. Those kids will get you through! We're here for you too and promise to get you through this ordeal. Godspeed.

donna_lee's picture
donna_lee
Posts: 410
Joined: Feb 2009

No one or no doc can say this is an easy surgery. It's scary. Lap opposed to open is easier on the body, but recovery does take time. Please allow the time to heal...physically, emotionally, and however else you need.
From the physical standpoint, muscles will be weaker; you start with two kidneys (one of which is not functioning adequately) and end up with one that has to do it all. Watch your salt and weight. And don't be afraid to be put on blood pressure meds if an internist prescribes it.
Share with your kids what is age appropriate. They will understand. And let them know you want to get better so you can spend more time with them; and that's why you need them to help you now.
Your tumor is/was in the size of a medium baking potato. I've been there-6 years ago-and came thru it.
Hang in there and we're here to listen.
Donna

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

Donna, your posts are as good as ever - a true pleasure to read.

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

Hi Joe,

What you are feeling is all completely normal and I'll bet getting it off your chest has made you feel a bit better all ready. We understand and we're here for whatever support you need, even if its just some place to vent. There are many members here with tumors larger than yours that are doing fine and you are going to do just fine as well. Your kids will be your strength and you are about to learn that they are stronger than you think they are. Very soon this will all be behind you and you can get back to the important things of life. Let us know how things turn out when you can.

Good luck and Godspeed,

Gary

Joe_fh
Posts: 47
Joined: Aug 2012

Thank you all for the words of encouragement. To be perfectly honest, I needed them.

I am happy to have found this place, it's a far cry better than so many of the doom and gloom web sites I have stumbled across since I learned of this disease.

I have to be checked into the VA Medical Center at 9:00 am for surgery at 11, so this is likely to be a very long night of nerves. I spent most of the day working, and that helped keep my mind off it. But sooner or later night falls and that is the time your imagination weights in on the what-ifs, and how-comes. But I would guess you all know these things already.

I am still waiting for someone jump up to say April Fools, but then I realize it's August. It's still kinda surreal to move from discovery to surgery in not quite 30 days. Does that rapid progression seem normal/common to you folks?

And even after getting over the surgical hump, I understand it's just the beginning of the journey as you wait on the pathology report to determine type and grade which defines just how far up the screwed meter you push the needle. Perhaps that is a bad way to phrase it, but I am attempting to keep some semblance of humor. There is so much I don't know yet.

And at this point I am apparently rambling, so I should stop and simply say.. Thanks for the encouragement folks.

Digger95
Posts: 59
Joined: Jun 2010

Joe,

I went from diagnosis to operating table in less than a week. My nephrologist didn't mess around and in hindsight I am very glad for that because I didn't have much time to sit around and worry. You'll do great tomorrow, and we'll all be thinking of you.

Jim

icemantoo's picture
icemantoo
Posts: 1568
Joined: Jan 2010

Joe,

Welcome to our club which nobody asks to join. Although I had it relatively easy with a Stage i diagnosis and no problems over the years there are so many on this board doing well with similar diagnoses to yoursefl that you should be able to here from those in your situation. In fact a number of them have greated you as well. Good luck on your surgery and recovery and may they be uneventful as well. My Dr. wrote on my surgical or dischrge summary that I was no longer in pain. Hah! A little pain however is required for your memborship.

Icemantoo

Bubbs21
Posts: 44
Joined: Jul 2012

Wishing you all the best tomorrow and with your recovery. Let us know how you are doing.

I am glad you can get it out so quickly. Before you know it you will be back with your kids and planning for other life events....godspeed.

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

Good luck Joe. As you said, stay strong for the kids. It is not easy, but they are counting on you. Gee, no pressure there. Going from diagnosis to surgery so quickly is the way to go. I also had mine within a few days of diagnosis. You can spend your energy on getting better. And not spend your energy worrying about it for weeks. Your kids will be happy to help. If not, we can send Gary or Paula to do laundry.

James1980
Posts: 10
Joined: Aug 2012

I was/am in much the same position as you. I am still waiting for surgery (September 12th.) I stumbled onto this site, just like you, and found the same comforting words from the same people. They truly are a great group.

My prayers are with you, tonight and always!

God bless you!

Joe_fh
Posts: 47
Joined: Aug 2012

Just going to manage a few words here. I am at home, still experiencing a lot of pain, but I did indeed survive. I was released around noon and after the most bumpy car ride I believe I ever had - I am in my own bedroom.

Surgery came off well, no complications. Doctors felt they got it all, no pathology yet. Very large ugly scar.

I will try to log back on tomorrow - perhaps the pain will be down a bit by them.

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

Good for you Joe - well done. Do you have enough help at home to cope with your situation?

If you feel up to it, you can dig aroung in the threads here for useful tips on the practicalities of living in the early period of recovery. In fact, you might find it worthwhile asking for suggestions for dealing with any problems you have (both practical and psychological - if you have any). there's a lot of valuable experience available here and an infinite fund of goodwill you can tap into. Just a thought.

As iceman always says, it's tough at first but every day gets better.

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

[Double-posting, drat!]

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Home is so much nicer than hospitals. At least at home, I was able to watch my Beloved Washington Nationals (if it weren't for an off day, I might not have found the cancer).

Definitely look up what to do to help yourself. I have three pieces of advice: 1) Do not move quickly, 2) walk as much as you can, and 3) with any fever, call the Dr immediately. On the latter, I waited one day (four weeks out)...I thought I had a virus. Cost me three more weeks of recovery.

**** Luck!

Joe_fh
Posts: 47
Joined: Aug 2012

I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.

Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.

I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.

At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.

I got sent home Sunday.

Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.

But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.

So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

So, you are already getting the Tylenol doses. The thing is, more than six per day can hurt your liver.

The only real option is to increase the dose of Narcotics, but that will make you a zombie, and there are risks of addiction.

Unfortunately, pain is part of the process.

You can't use ibuprofin because of bleading risks. I am not sure about the other Non-steriodal anti-inflamitories and bleeding , but they are bad for the kidney.

Good luck!

constantprayer
Posts: 18
Joined: Jul 2012

Joe -

Your incisions sound like mine. I had my surgery two weeks ago. In my case the pain management made me sick. They put me on dilaudid as soon as I was out of surgery and 24 hours later I was as sick as a dog. I knew something was wrong, but the nurse kept telling me "don't worry, this is normal". Once the doctor realized what was happening he took me off dilaudid and put me on tylenol. I have been on tylenol ever since. In the beginning I was taking one 500 mg tylenol every 4 hours and now it has slowed down to one every 8 hours. The only problem is that I have not had a good night's sleep since I got home. I go to the doctor today to get my staples removed and I am considering asking for something that will help me sleep. I don't know if that's a good idea or not.

Anyway... give yourself a break! You just had major surgery and you know your body better than anyone else. If you are hurting... please tell the doctor so he can help you.

Blessings and speedy healing,

Cheryl

LaurenM
Posts: 1
Joined: Sep 2012

I had a left radical nephrectomy. After that I was told that I could no longer take ibprofin or asprin. Tylenol was the only pain killer I could take (and tylenol mixes of course). My tumor was quite a bit larger so my insicion was from flank to flank. I personally prefered to stay on top of my pain because it's way worse trying to play catch up.

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

Pain management is important in your healing, and it needs to be managed effectively. Don't hesitate to tell your doctor you're still experiencing pain, and my guess is he'll increase your dosage of the oxycodone or add a pain patch to your maintenance regime. Suffering it out--as my husband had a tendency to do--does more harm than good. As far as becoming a zombie, John now takes 20 mg twice a day and it does not provide him a high or buzz at all; it simply relieves pain. He drives, he communicates effectively, he appears perfectly normal.

Good luck to you.

Joe_fh
Posts: 47
Joined: Aug 2012

Hi Folks, wanted to drop a note on my situation.

I spoke with my doctor this morning, they apparently have got my pathology report back. When I spoke with him, he was out of pocket and did not have the report in front of him, but the gist is that the cancer was classified as IIIa due to size of tumor and some involvement with the Renal Vein. Since he did not have the report in hand, I did not get details such as type or grade.

Overall, he seemed pretty upbeat about my situation. No evidence of Metastatic cancer, he said the Lymph nodes showed no evidence either. He also said that the pathology report did show that the margins were clear and he was confident that we got the whole thing.

At this point, they plan no follow up treatment other than to closely watch for any new growth with initial quarterly scans. They did set up an appointment for me to come in and speak with Urology and Onology (sp?) to provide greater detail on all the results in October.

Surgery recovery is not going bad, I have cut my pain meds down substantially and seem to be tolerating the remaining soreness okay. Still hurts to Cough or Sneeze, but otherwise the pain seems to have retreated back to a point that seems to be more of a dull awareness rather than anything really tough.

His assistant whom I know personally, confided that her impression was (that the doctor felt) that I got lucky. With a tumor of that size, they would have expected to see more invasion, but did not. So I am feeling pretty good at the moment emotionally. I am not under any illusions, this was a serious matter that, for now, seems to be well managed. Just have to hope it stays that way.

adman's picture
adman
Posts: 266
Joined: Jul 2012

God Bless! Stay strong and continue to kick arse.

~M

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

Hi Joe,

What you have heard so far sounds like very good news, I expect the full path report will confirm it. It sounds like you are managing the recovery process very well and you are maintaining a positive attitude, good job!! It won't be long before you are back to "normal".

Hang in there,

Gary

Joe_fh
Posts: 47
Joined: Aug 2012

When I spoke with the Doctor yesterday, I asked him to phone me back with the classification details. I have those now.

T3aN0Mx

Clear Cell - extraction size 12 cm - grade 3.

Margins are confirmed clear.

Now I don't know precisely what those numbers mean, but my gut (no pun intended) didn't like them very much.

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

Joe, many members of our club have better classifications than yours, but quite a few of us must envy them. You knew your tumour was large but T3a (out of 4) isn't disastrous. Grade 3 (of 4)could be better but isn't a catastrophe. You're clear cell, which means most of the established facts and possible treatments apply to you. N0 is very good news since node involvement doesn't augur well. Mx is good and if it stays that way you're laughing.

Since your margins are clear, there's a good chance that you'll go on to N0M0 status and NED. Keep us posted and keep visiting here if you find it worthwhile.

Joe_fh
Posts: 47
Joined: Aug 2012

Thank you very much for the clarification Texas_wedge.

One thing I am curious about (one thing - that's an understatement) is the tumour size. When they detected it, 08/03/2012 they said it was 10cm. Upon extraction 08/31/2012 it was measured at 12cm. My question is; Is it feasible that the sucker actually grew 2cm in under 30 days? Or is it more likely that it's hard to get an exact size while still in the body?

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

While both are possible, its much more likely with clear cell (slow growing) that an exact size is hard tom get from the image. My image was 4.9cm and the tumor actually measured 4.2cm.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Joe, glad you are recovering nicely. The path report seems very good! Just a comment i received from my doctor on the size difference. The doc said that a ct scan doesn't really see all of the tissue but an MRI does. For example, when my mom had an mri done the tumor size shown was 2 cms bigger than the actual ct scan said it was. During surgery the MRI won out as the tumor was the size of the MRI to the T. So it is probably that it didn't grow 2 cm's in a month. Hope this makes sense. Keep positive, take one day at a time and try not to worry too much. Prayers going out for you. By the way, you have expert advice on these boards, everyone stands with you!!

Joe_fh
Posts: 47
Joined: Aug 2012

Yea, they actually changed that size 3 times...

The very first CT - the one that started this roller coaster ride - was actually looking at something else they thought was a problem, but turned out to be nothing.. But in those results they also saw this tumor and the report read they saw what looked like a 15 cm tumor on the left Kidney.

Well the doctor shot me right back in there 2 days later for a CT with contrast. On that one they noted the size at 10cm.

Of course after surgery the pathology report confirmed 12.1cm

So I guess the take away from all that is that it's hard to be precise on CT images alone. I never did an MRI, so I can't speak to that end.

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

Hi Joe,

With a tumor your size this is about as good a pathology as you could ever expect, Tex has already given you great information, I've nothing to add there. What I do want to suggest is that you check out Mr. Gerald White's MAARS program. Mr. White is a 20+ year survivor of RCC, with a much larger tumor than yours, who refused to accept defeat after being given 3 months to live. He developed a guided imagery program that helps your mind and body identify and kill invading cancer cells, there are many here that are using it. Even if you don't buy the program, its inexpensive, his story is a very inspirational example of what is possible and it will help put your gut at ease.

Hang in there,

Gary

Joe_fh
Posts: 47
Joined: Aug 2012

I figure it's best to not create a new topic each time I post, keep all my stuff together for easier reference.

I am curious about the grading of cancer. Mine as I said earlier was graded at 3. How does the grade impact the conventional wisdom of Cell Cell type - Renal Cell Carcinoma being a "Slow growing" cancer?

As I understand the grading, the higher the number the more aggressive the cells. Is that an impact on speed of growth or does it define it's ability to invade?

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

Don't want to speak for the other poster or claim to know more than I do, but I think the CCRCC is slower growing than the other types of RCC - such as ChromoPhobe.

The Grade 3 of 4 would show that this is a faster growing than grade 1 but slower than grade 4.... If this makes sense.

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Well I missed the pain conversation days ago, but maybe someone else can be helped by this. I recently had a procedure that caused some pretty excrutiating pain. The doctor prescribed Oxycodone and prescription strength Naproxen (Aleve). I thought I was supposed to take them separately, and when I did, it didn't work well. I did a little internet reading and found they are supposed to be taken at the same time.... worked like a charm, and I slept quite peacefully. Ask about it!

Kimmyanne
Posts: 21
Joined: Mar 2012

You have a right to yell at this cancer all you want...My cancer has a poor prognosis too, atleast that's what statistics say. In jan of this year I was dx with stage 3c ovarian cancer, unfortunalty this cancer most times is dx at an advanced stage (stage 3 and 4) because the symptoms mock other symptoms.The Symptoms whisper...You'll do fine! You seem to have a great support team here...Stay strong

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

Kimmyanne,

We are all brothers and sisters when it comes to cancer, you are most welcome here. You are spot on about RCC and ovarian cancer, both are called silent killers because there may be no symptoms, or the symptoms are "whispered" away until many times its too late. The advances in recent years are beginning to erase that nick name and give us all new hope. May we live to see it gone for good.

Good luck and Godspeed,

Gary

Joe_fh
Posts: 47
Joined: Aug 2012

Hi folks, wanted to drop a update on my situation, and perhaps seek some insight on future treatments.

I had the opportunity to speak with a doctor in the VA's oncology department ahead of my first appointment scheduled for 10/18/2012. Among items briefly discussed was a mention of the possibility of Chemo/radiation as a preventative therapy. Brief on my status is T3aNxMx, CC, grade 3, clear margins. Details are in the thread above. From a surgical perspective, all the cancer was removed.

Oncology believes, correctly so from what I have read, that due to my tumor size as well as some renal vein involvement, that I am at high risk for new growth and/or met development. This Doctor mentioned that some things for me to think about ahead of the first meeting is the possibility of chemo.

Now here's the part where I am seeking advice from the more experienced among us here.

Everything I have read since learning of my cancer indicates to me that Chemotherapy and radiation is ineffective in Renal Cell Carcinoma. I am not talking about in one place, but site after site mentions this. So, I am obviously a bit confused why this therapy is being floated as a potential way to go to increase my chances against redevelopment.

Now I know that none of us are doctors, and I am certainly no expert on anything about this disease - a armchair hack at best. So I am looking to hear from folks who have been through this where Chemo was involved. What was your experiences?, did you find it beneficial? Is there any insights you can provide from personal experience?

Honestly, I am not sure I want to go through all the downside of chemo if a clear benefit is not indicated. Now I intend to voice this concern at the meeting, but any personal background from the experience ahead of that would be great to have.

Thoughts?

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

Joe, do you know the names of any of the drugs your doc had in mind? In general, you're right that radiation and chemo are ineffective against RCC. The only pathology for which chemo offers possible benefits seems to be sarcomatoid but I don't think you have any sarcomatoid features, do you?

It may be that your doc has other drugs in mind, such as the newer targeted therapies, or, possibly, immunotherapy. If he really meant chemo, I think you have good reason to doubt whether it's worth the candle.

Joe_fh
Posts: 47
Joined: Aug 2012

Thanks for the reply Wedge ...

In regard to a specific drug name, no, he cited no drug name - the conversation was brief. It is also possible he just used the words Chemo/radiation as a frame of reference, and intends newer targeted therapies as you suggest, difficult to say. I guess the appointment next week will reveal more. Just hope they don't press me for an immediate decision on my part, I like to do a little independent research as to what I am getting into before I get into it.

To the best of my knowledge, there are no sarcomatoid features involved. The pathology report only referred to Clear Cell as the type.

But you did confirm what I have been reading with regard to chemo/radiation. Much appreciated.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I am sure i missed this in one of your previous posts but can you please explain to me what the hell does SARCOMATOID mean or what that is.

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

Mike, you've got to remember that I have no medical training, so this is just a lay friend's response in an attempt to answer your question. With luck, someone with real knowledge will come along and correct me where i may be about to mislead you.

The human body has many different types of cell, specialised for particular sets of functions. Generally they remain distinct so that it's a myth that when strength athletes give up training "their muscle turns to fat" - it just can't happen. (But with my life-long interest in the areas that takes us into, I'd better not expand on that particular one of my hobby horses, or I'll never stop!)

Originally the cells are in a general, inchoate, form that precedes their specialisation, which the pros call cellular differentiation. (I hope I'll live long enough to learn a bit more about it all but I'm intigued to know how we each come to have our own types of cancer cells. Presumably much has to do with where in our bodies the initial failure to control cellular proliferation kicks off.)

Whatever, some of us get clear cell RCC, fewer get one of the forms of papillary, fewer still chromophobe and you'll have heard of the still rarer kinds such as collecting duct, oncocytomas, mucinous tubular spindle cell (the unusual form that Cody, Gail's son has - you know, "myboys2", whom we haven't heard from on CSN for a while) translocation Xp 11.2 and so on (the fabulous treasure-house site of the late great Steve Dunn gives a lot of info on some of these at:
http://cancerguide.org/rcc_subtypes.html

So, these cells have become differentiated into different RCC types, each with their own wildly different properties, provenances and responses to treatment. However, for whatever reason (anyone able to educate me on such points would be welcomed) and under what triggering circumstances (I have some thoughts on this) any of these specialised cell types can metamorphose by regressing to the earlier, undifferentiated form. This process is termed "de-differentiation", as the opposite of the previous specialisation, though unfortunately many, including those who should know better, often, confusingly, sloppily describe it as sarcomatous 'differentiation', thus obscuring the whole point about it being a process of regression, not progression. (As an arch pedant, this drives me nuts, like people talking of creatine when they are referring to its metabolite creatinine.)

Until comparatively recently, the sarcomatoid pathology was thought to be another sub-type of RCC. Then it was realised that it is a possible transmogrification of any (?) of the true sub-types of RCC. What's called sarcomatous change is also a game-changer. If, like me, you have underlying chromophobe, which is the most slow-growing form of RCC and therefore escapes detection until it's achieved large tumours and is therefore typically detected in older patients (I probably have had it [unfortunate choice of phrase!] for more than thirty years while being blissfully unaware) it's a particularly unpalatable change. This is because the sarcomatoid form is, for some reason (and I'd love to know the underlying mechanisms), much more aggressive and develops much faster, as I'm all too aware, having just swallowed some more pain killers for my latest recurrence which has grown from nothing to 5cm. (more, by now, I'm sure) in not all that many weeks.

Unfortunately at this stage, chromophobe, from being the histology with the best prognosis, has become incurable and has less weapons in the arsenal for life extension and quality than other forms. More generally, though, for some reason, the regression to sarcomatoid form makes the cancer more susceptible to intervention by the old chemo drugs, notably doxorubicin and gemcitabine, as a recent paper by the eminent (and wonderful) Dr. Janice Dutcher et al. testifies.

The more the sarcomatoid component takes over, the worse the prognosis, so a diagnosis of simply 'sarcomatoid' is pretty bad news, as is the inability to type the RCC even as that, leading to a path report that says "undifferentiated" - a rag-bag description for whenever the pathologist is completely foxed by the appearance. Our friend Kathy here (her with the lovely dawg, Checkers) is just such a case, if I remember correctly.

At risk of looking too self-regarding, I can record that at this very moment, I'm facing having to make urgent decisions which are, to my mind, somewhat contingent on how far I pay attention to the promise of treatments for chromophobe and how far I regard that as history and focus on treatments for sarcomatoid histology. Matt, on ACOR, is one valuable source of academic info on this issue and I'm very appreciative of some of the care-givers here who are so kindly helping me, such as Clara, Ange and, of course, Alice, as well as patients with their own battles such as our plucky Paula and I am alive (another chromophobe with whom I have a lot in common).

So, your question about sarcomatoid is very timely.

Well, Mike, you did ask!

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

I remember my onc telling me they used to think that follow-up radiation helped, but they no longer think so. That being said, many of us have successfully had radiation on bone mets, but that's a different topic.

Along with not coughing and sneezing, you shouldn't laugh so we'll refrain from adding jokes and you need to stay away from the Friday joke thread!
Max

Joe_fh
Posts: 47
Joined: Aug 2012

First post surgery appointment with Oncology was decent news.

Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.

angec's picture
angec
Posts: 622
Joined: Mar 2012

YAHOO! I LOVE IT!! GOOD FOR YOU! GO RELAX AND HUG YOUR KIDS!!

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

Everything that Ange says! With as much enthusiasm! Good job Joe!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network