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post-op appt and path report

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi All,
I just got back from my post op doctor appointment and I am not sure how I am feeling. The good: I am feeling great physically. My staples were removed and I am cleared to go back to work next Monday, which will be just 20 days post-op. The mass actually ended up being smaller than what the ct showed (4cm vs 4.5cm). Margins uninvolved, not sure if that is good or bad. The grade is 2 but the stage is 3 due to where the mass started growing near the renal vein. The report states extension into the renal vein but otherwise contained in kidney. The dr said not to worry, that it was only classified as stage 3 because of location but that surgery got it all. But he also added that because of the location, there could be cancer cells in my blood. He said followup is still the same, chest xray in 3 mths, ct scan in 6. Should I find an oncologist as well? As always your info, wisdom, and inspiration is appreciated.

Thanks,
Wayne

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Wayne,

Sounds good to me. Not perfect, but good. There is always a small chance for recurrance. It sounds like the doctor was saying it looks like everything is OK, but as a doctor I can not guarantee it. Until and unless there are problems or future decisions to make it sounds like it is a little early to be thinking about an oncologist.Others are free to weigh in with more optimism than mine.

Best wishes,

Icemantoo

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

Hi Wayne,

Gotta agree with the iceman, no cause for alarm at this point. The follow-up plan is your best defense at this point, I'd wait on an oncologist until there is something to worry about which probably will never happen. Its more important to live and enjoy every day in the meantime.

Be vigilant, be healthy,

Gary

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Wayne, I have a different feeling about this. I say, go looking for an oncologist. Nothing to lose but a co-payment for an office visit. Let them review your pathology report. Let them be in on your plan of care early. I think that it has been established on this forum that should you need further care in the future, that waiting for appointments is stressfull. Stay a step ahead. They may give you a good reason to have a scan in 3 months. Not 6. Nothing to lose.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit.

My tumor was only stage 1, but grade 3 and my follow-up care is in the hands of an oncologist. As my urologist said "I'm a plumber, now you need an electrician." :)

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Since there are 2 yes votes and 2 no votes for seeing an Oncologist I must confess that I voted no because my Urologist was already a board cetified Oncologist and therefore I did not see the need. Upon further reflection of your situation and not mine why not see what an Oncologist says as well.

Best wishes,

Icemantoo

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Thank you all for your advice. I have an appointment with my family doctor tomorrow and will get her opinion as well. I have researched a little and my oncologists options in my area seem limited. It seems our "gift" is a different animal than the others.

Health and happiness to all,
Wayne

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

...there is no treatment for RCC (except surgical removal of the primary tumor) until and unless it metastasizes somewhere. That's why the doc is being very specific about follow up chest xray and ct scan in 6 months to check for any mets. I think anything an oncologist would do, if anything, at this point, would be shooting in the dark. Over-treatment. As with everyone else, just my opinion.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

That's not necessarily the case. The trial I was offered in the spring was for people who had nephectomies and had no evidence of mets. I guess a study to see if they could keep future mets at bay. I'm thinking that if the study was offered more locally, I just may have entered it........as I am thinking about it, It was my local oncologist who steered me to that study. She was surprised and disappointed that I didn't enter it. It just had too much travel, potential miserable side effects, and a variety of doses and placebos. Just had no idea what I might have been given. The bottom line was that if I was only going to live another year, I was going to have a great summer and not feel miserable and unable to do the things that are important to me. ie: golf and motorcycles.

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

Fox - golf and bikes - I sense the possibility of a new sport - nah! maybe not.

I think I can agree with both sides in this debate. There's no cause for panic at this juncture but, nonetheless, getting an oncologist's input sounds like a good idea. It's interesting to see iceman and Fox both musing over their past experience and re-analysing. Count me, on balance, on the oncologist side, Wayne. They are very distinct specialties and I can express it no better than Gerald White has done in his book "Three Months to ----- > Life" when, with characteristic astuteness, he says:

"It is therefore no more logical to bet your life on the surgeon to manage the ongoing treatment than it would have been to expect the oncologist to perform the initial surgery."

Put that way, and given the stakes, it seems to me an easier call than might have, at first, appeared. Suitable specialists may not be thick on the ground in Indian Hills Wayne, but surely there must be Renal Oncologists in Reno!?

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

I saw my family doctor today and while she told me what we know about rcc being treated with just surgery she also said she would do some research and give me her opinion in a few days. Her point was since it was in the renal vein, maybe an oncologist would help.
Fox, there is a clinical trial going on here that sounds exactly like the one you described, basically to see if it will prevent recurrence. The drug is called Everolimus I believe. I have contacted the doctor conducting the research, an oncologist, and they would like to see my records. I think I may give it a go if I qualify. I do know what you mean about not wanting to waste time feeling bad. The weather here was nice yesterday and I almost brought the harley out of hibernation for a little ride, would have for sure today but it was rainy and cold. As always, thanks to all for your input.

Health and happiness,
Wayne

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Yes, that's exactly my point about "shooting in the dark." It really is a personal decision whether or not to join a trial when you have no real evidence of needing one. That's why it's not considered a treatment for kidney cancer. You're not actually treating kidney cancer, just a chance of preventing it (its recurrence). And to subject yourself to the meds.... well, I wouldn't do it unless there was a VERY compelling reason for doing so. But that's just me. If the tumor was large, the margins were not clean, or mets had already been found, then I would be the first person in line for a trial.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

I quitted Everolimus/Afinitortrial trial in 2010 (see MDX-1106 thread), it was called RAD001 at that time and it was required to have had met RCC to begin with. What is the drug's current trial status?

Because Everolimus works as a target drug treatment, I would vote for no-target-no-treatment. IMHO

Jon

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

I was asked to participate in the Everolimus trial a couple of weeks ago. I had an open partial on 12/6/11. I was at stage 1 with no mets and clear margins. The way it was explained to me was they were using the drug on stage 3 & 4 patients and they were interested in seeing if it improved recurrence in early stage kidney cancer. You have to enter the trial within 42 days (I believe) of surgery.
I would have a 2.5 hour drive each way (every 6 weeks), I would have to cover all expenses except the drug cost, the chance of being on the placebo and there was a long list of side effects. I just couldn't do it financially for sure and emotionally it would be very hard after going through surgery and getting a good report. I turned them down.

B.E.E
Posts: 1
Joined: Feb 2012

Hi, I'm writting on behalf of my mom would also has refused surgery and "make you ill" drugs. Her tumor is 8x9cm and on the upper left kidney. The injury has spread to her lungs and also to her right femur. She found out she had the cancer because her femur broke. They inserted a rod into the bone and she underwent radiation there to ensure the steel pins didn't push the remaining cancer into the bone further. The only reason why she had the radiation treatment is becasue she thought she was getting a laperscopic surgery on the kidney and it meant that by the end of February she would have 66% of the cancer out of her body. Big mistake as the radiation depleated every vitamin and mineral in her and there is massive swelling. After the CT scan last Friday the urologist said he'd have to do a full slice surgery because the tumor is touching the spleen meaning the spleen would have to go too. This would be 2 months bed rest plus 2 months limited mobility on top of a gimp leg. We live in western Canada and there are no drugs that work. I have her on a no dairy, sugar and starch diet as well as vitamin and mineral supplements. We trust in the power of the immune system.

sheryyboeger782
Posts: 4
Joined: Feb 2012

I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit. - sinus infection symptoms | brown spotting

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

My family doc's opinion was that I didn't need to see an oncologist at this point. Today, I sent my records to the oncologist that is conducting the trial in my area. His office is about 5 miles from my work so it would be easy enough. I just want to hear more about the trial and to see if I even qualify. I also figure that if this doctor is the lead on the trial for this area, he must have some expertise in kidney cancer. There is a blog out there written by the wife of a man who has struggled with this disease for many years, think it is myhusbandskidneycancer.com. In it she writes that one of their biggest regrets was not consulting with an oncologist after his nephrectomy. I decided I am not going to have that regret.

happiness , health, and God bless all,
Wayne

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

To this observer that looks like a wise decision Wayne. You've got nothing to lose by doing so and you're covering all the angles. Doubtless you'll keep us apprised of how matters develop from here.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi All,

So I met with the oncologist yesterday. Because I had some renal vein invasion, I am classified as an intermediate high risk of recurrence. This fact, along with everything thus far, qualify me for the trial. He wants a CT scan of the chest rather than x-ray and more blood work first. If that is all good then we will meet to discuss the trial in detail, side-effects, protocol, etc.

Health and happiness to all,

Wayne

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

It sounds as though the situation is being handled very sensibly Wayne. Doubtless you'll keep us all informed as matters progress. The point about renal vein involvement maybe addresses Jamie's question of whether there were good enough grounds for taking an action which is prophylactic rather than dealing with a known condition.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Good move Wayne. Regretting what we could have done is not a wise option.

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

Wayne,

I love the phrase "Attack with extreme prejudice!" when it comes to this disease. You have made a good decision, put the pedal to the metal and give it hell!!

Gary

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

My clinical oncologist wanted lab work and a ct scan of the chest before I can enter the trial. I had the lab work done last Friday. I was scheduled for the ct scan today but my insurance did not preauthorize it. They are supposed to speak with the oncologist tomorrow to find out the details of the trial before they will approve it. Hopefully I will know something by this week. Very frustrating to say the least.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Insurance pre-authorization is a PIA and nonsense. I had my MDX held up by a case manager who required a pre-auth of a treatment that the insurance didn't have to pay for. I had to have many different scans, blood work and biopsies. The kicker is that the trial sponser was going to pay for ALL my treatments which could be in the hundreds of thousands of dollars... If I didn't get in the trial, then I was going to have to be treated with Interleuken 2 which insurance would have to pay for. And that was hundred of thousand of dollars...How stupid is that? Make several phone calls yourself. Be your own advocate.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

All approved and scheduled for ct scan in the morning!

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Well my chest scan results were excellent, so said the clinical research dept at the hospital where the trial is being conducted, but..... I need a pelvic and abdomen scan which the dr. forgot to order. I am scheduled for those on Friday morning and if they go well, I sign the disclosure papers and begin the trial.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

!!!!!!!!!!!!!

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Happy to report all my ct scans required by the trial (chest, abdomen, pelvis) came back clear. I just signed the paperwork and I will begin on Monday. I am excited and scared at the same time. My only no no's while on the trial are no citrus, which sucks as I juice an orange every morning, and no Xanax which I sometimes take for anxiety attacks. They also told me that in p3 trials, patients usually tolerate the drugs well. I am keeping my fingers crossed that I will.

Blessings to all,
Wayne

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

You can do this, Wayne. I'm so glad to hear the scans are clear and you're ready for the trial.

I think I'd be whining more about giving up my Xanex than orange juice. You just might 'discover' another favorite--like passion fruit juice. Keep us updated on how you're doing.

Stay strong!

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

Wayne,

Congrats on the test results and starting the trial. You have a lot of positive energy right now and that will serve you well as things progress, don'tcha just love it when a plan comes together?

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

That's good to know Wayne. No Grapefruit, Orange is fine I thought. Maybe check ?

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

No, Raj, maybe not. These interaction reports are being steadily broadened in scope and include some orange juices (e.g. Seville, from memory - would make sense as it's a sour orange, more like grapefruit) and sometimes also apple. So, it's probably wisest, pro tem, to heed the advice of the drug manufacturers and prescribers until the picture is clearer.

Very busy just now but will indicate later when we can talk.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

No Citrus - But, No Apples ? Berries ? Lemons and Lime ?

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Wayne,

So happy your scans came back clear. Will be keeping you in my thoughts and prayers. Take care.

Blessings,
Lisa

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Took my second dose today and so far, not feeling a thing. Maybe I am getting the placebo. Anyone know how long it would take before any side effects would surface?

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

My doc tells me some don't get any side effects, but most will get something between a week to 2 weeks. Are you checking your BP ? 2 days, I doubt you will feel anything..

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi Raj,
Have you decided to go into a trial?

sheryyboeger782
Posts: 4
Joined: Feb 2012

Thanks for your discussions. Useful for me.
- sinus infection symptoms | brown spotting

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