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Texas_wedge said:

Second opinion
Ask that another radiologist examine the slides. Good professionals approve of second opinions on matters where there is doubt, if the issue might be one of importance for the patient.

another opinion
Let me add that in my long experience in the "medical" model, each discipline tends to focus on their area as the "primary" importance. And surgeons do surgery. Oncologists are far more concentrated on cancer. DEFINITELY see an oncologist. There are options only they may know. Let me update you on my experience as the patient.
I had my nephrectomy in march2011. Started seeing a local oncologist at our hospital cancer center until oct. 2011. At that point she said she could no longer help me.( not sure what see did anyway except give me the bad news after an october scan. At that point I had many mets in my lungs, liver, and lymph nodes. Dr. told me I would probably be dead by spring2012. So I went to a much larger hospital cancer center. I was able to pull some strings and got to see the top rated oncologist there. His response was "Good luck.". So, one more last ditch effort at Yale/New Haven Smilow cancer center. It was the only center that would do IL-2. I begged for it. ( not really expecting it to help.) But then I was offered the MDX trial if I was interested and if I qualified. The rest is history. I am alive and well. My current Dr. has told me that when I do die, it won't be from kidney cancer. I am one of the fortunate responders to this drug. The point of all this is that I was not aware of all options available to me. Not even from other oncologists. So keep up your earch and definitely find a good oncologist. Good luck! Fox.

NewDay said:

2nd opinion pathology report
I hate to ask dumb questions, but how do I ask for another radiologist? Do I ask the Urologist to choose another one at the same hospital or do I ask a different doctor at another hospital to send them to their radiologist? I think this is a really good idea because my tumor would have been found in March if the radiologist had not misread my ultrasound though I don't know if 2 months would have made any difference.

So, for another dumb question, when my doc says he will do another scan in 6 months, that will actually be 8 months from the original scan. Again, I don't know if 2 months makes any difference, but I wonder if I should push for 6 months from the first scan.

One more question. My sister asked me why I care what the subtype is if the tumor is out, what difference does it make? I couldn't think of an answer other than I just want to know. Is there a reason it would be important?

fox,
thanks for the recap. It helps to know the story of the people who regularly offer support here.

Kathy

Second opinion
Kathy, at risk of giving dumb answers, I'll give it a go by using your last remark to Fox as a pointer and using my own case as illustrative of the reasoning.

My view is that the sensible starting point would be discussion with your urologist, bringing up the issues you've already identified and asking for further scrutiny of the path materials by someone on the urologist's recommendation.

It would be fair enough for you to ask whether that might involve going further afield. I'm in the happy position that I'm in the care of a large multi-disciplinary team (many urologists, radiologists, oncologists, nephrologists and specialist cancer nurses) so my case is discussed at one of the regular Monday morning board meetings with inputs from the various specialties.

My situation is anomalous. I have what would be the worst prognosis conceivable but for the fact that so far no distant mets are apparent and if nothing more shows up I will be very lucky and the future will look brighter. However, I have all of the indicators of extremely aggressive disease which could metastssise anywhere and very suddenly so it's a classic example of the unenviable state of having to wait in complete uncertainty.


Therefore, the judgment is that I need very close monitoring, involving CT scans with contrast every 3 months or less and to hell with the consequences of radiation and dye exposure. (My hospital has the very latest low-emission scanners and I believe they use isotonic, non-ionic iodinated contrast dye so the risks are reduced to acceptable levels, considering the value of the information yielded.)

The reason for my close monitoring is pT4, stage 4, grade 4, predominantly sarcomatoid, extensively necrotic with one very rapid recurrence (requiring a second major open operation), so far. The de-differentiation and necrosis are both very bad signs, indicating aggressiveness. It may be fruitless to speculate on how earlier detection would have played out in your case but the unclassifiable nature of your histology is also indicative of aggressive disease. In your shoes, I would be requesting a CT scan, with contrast, sooner than currently envisaged (unless some convincing contraindication is stated).

You and I both have very rare forms of RCC where not too much is known as yet. It would be interesting to know about the relationship between de-differentiation and "unclassifiable" pathology. It's notable that you have necrosis but, apparently, no sarcomatoid features. Very mysterious. It could be helpful if more light can be thrown on the exact nature of your tumour cells.

Your Sister's question is logical. If they 'got it all' and you're cured, what it was may be unimportant. However, 'got it all' is a notoriously difficult call. You might be faced with a recurrence, like mine. In the event that that could not safely be dealt with purely by surgery, the histology could be crucial in determing the most effective adjuvant therapy. For instance, in my case - heavily sarcomatoid - the older chemo agents have a possible role that doesn't apply to non-sarcomatous RCC. It's horses for courses with drug treatments (though much has still to be learnt about which courses for which horses!). You might enjoy many healthy years and then have a 'recurrence' much later in life. Your histology now might have some informational value then. Another factor is the possibility of your having a genetic form of RCC (i.e. familial) in which case knowing about this could be relevant for your blood relatives. The platitude that 'knowledge is power' is constantly adduced in talking about RCC for good reason!

The above is just one layman's opinion but it might serve to arm you with more questions to ask your doctors.

NewDay said:

Had post-op yesterday
Hi Tex,
Aren’t we “special” with our rare cancer? I don’t remember what led up to the comment since I was such a well behaved kid, but I remember a very “proper” school teacher once saying “Young lady, you are highly irregular”. Apparently I still am. I admire your positive attitude with all the reasons you have not to be. I think I’ll come around to that. I’m just not there yet.

I had my post-op visit yesterday with the surgeon’s PA. Because of the pathology report saying that the type was “unclassified” and “possibly” invaded the renal sinus fat, I asked about getting a 2nd opinion from another pathologist. She asked the surgeon and he told her that they don’t have their own pathologists review another’s report, that I would have to go to another doctor at a different hospital and have to get the slides sent to the radiology department there. He cautioned that my insurance may not pay for it. The PA was trying to get across how fortunate I was that it was only stage 2 and had not spread. I said I wish that gave me warm fuzzies, but the unclassified + possibly invaded the renal sinus fat + grade 4 + necrosis + unintentional weight loss, from what I read, are bad signs. She agreed. She said they may not have been able to identify the type because it was growing so fast. I also asked what would have been done with the actual tissue. She said I would have had to sign a form requesting them to save it. I wish I had known that was an option. I also asked why they didn’t indicate if it might be a hereditary type and she said there was no reason to test for that. I guess they overlooked the fact that my nephew also had it. I ran into the surgeon on the way out and he said he understood my wanting to know all of these things, but that it would not change anything. Oh well. I guess that’s the end of that.

I see the Oncologist next week, which the surgeon thought was not necessary since there won’t be any additional treatment, but said it was ok. My next scan will be in December.

Now I have to focus back on the original problem with my losing weight. I can eat very little because I get full so quickly. Just a few bites and I feel stuffed. That was why I even had a CT scan and that problem is still undiagnosed. My blood tests are showing signs of malnutrition so I’ve got to do something before I just waste away. The hope was that removing the tumor might solve the problem but it didn’t.

I was wondering, if(God forbid), it was to spread to the lungs for example, and they removed it, could they test that tissue to determine the type at that time? Would that tissue be the same?

I do want to thank everyone for your encouragement and info.

Kathy

Second opinions
Kathy,

I have less medical background than most on this board, but my gut reaction in reading your doctor's/nurse's reaction to a second opinion and your initial health issue (weight loss) tells me you should get a second opinion. John's doctor made it perfectly clear that if John wanted a second opinion, he would welcome it. Even our insurance company encouraged it. They made it clear that additional opinions were not limited to two. So you may want to call your insurance company.

Keep us posted and take care.

NewDay said:

Striking a balance
One thing I’m struggling with is how to find a balance between having a positive, don’t worry attitude, but at the same time worrying enough about negative things to make me ask more questions, get more tests, etc. in order to be prepared for or prevent oncoming problems. For example, I’ve had doctors and nurses cheerfully telling me how I will be fine with one kidney. I know that is normally the case, but not always. My brother, who was born with only one, died at 17 from kidney failure supposedly because childhood diseases damaged it. I was told in April that I had some damage in both kidneys and together they were functioning at 58%. I’m praying that all of that was from my left kidney because if my right one was pulling any of the load, it’s gone. I don’t want to be gloom and doom and I appreciate they want to be encouraging, but if I just listened to all of the comments about how I’m going to be just fine now the tumor is out, I wouldn’t push for 2nd opinions, follow up with the nephrologist, ask for extra blood tests, etc. I would just cheerfully sit on my hands between now and my next scan and assume my other kidney is fine. As I said, it is hard to know when to focus enough on the negative so you are motivated to push for things and make sure something is not overlooked, but still maintain a positive attitude, telling yourself all of the negative stuff won’t happen and everything will be just fine.

Balance
Kathy,

As a survivor a large part of a positive attitude is the confidence that you can stare into the face of the demon, spit in its eye, and wake the next morning grateful for another day. Attack with extreme prejudice, don't just dwell on the negative, go kick its butt, you'll be surprised how good that feels. When we take action our fears begins to melt and we regain control, get a 2nd opinion and a 3rd or 4th if necessary, find a medical team that understands you in this fight to win and you won't take no or "not necessary" for an answer. We can't control the future, we can only work on the here and now and prepare so that no matter what lies ahead we are ready, we are survivors, we are warriors!

Stay strong,

Gary

Texas_wedge said:

Balance
Kathy, just a thought - maybe what's needed is a subtle shift in cognitive strategy.

Our problem is in paying enough attention to the downside to head off possible problems (so far as we can) without focusing too much on the gloomier side of things.

Gary constantly counsels something along the lines of preparing for the worst but expecting the best. Another theme he keeps in front of us is to concern ourselves with what we can do to improve matters but to eschew worrying about things over which we have no control.

That's rock hard common-sense. The trick is in how to accomplish it. It's a lot easier when, like Gary, you're no longer in the thick of it and can be calm in contemplating the future, even though the future is never certain. While you're still at the front line (as patient or as carer) it's more difficult.

So, my idea is to change the mental approach to the downside possibilities. Rather than be pre-occupied with the less attractive outcomes and brood over them, focus on the positive side of what you are doing to combat them, while accepting that some aspects are 'in the hands of God alone'.

Apart from the actual value of, for example, turning up a treatment that your doctors have overlooked, there is the importance of having some sense of control over one's destiny. The evidence in the literature of the social sciences is such that the importance of that sense of participation in shaping one's future (even if, in truth, your contribution is negligible) can't be overstated. In the UK, the paternalistic character of our NHS tends to undermine a sense of control but the more enlightened medics are part of the movement towards greater active participation by patients. In the USA you can be more the boss but I guess the role of medical insurers counters that to some degree?

The idea, then is not to be mesmerised by all that can go wrong but to think more about what one is doing to improve the chances of a better outcome. Seeking second opinions is one example. Even when the previous opinion is confirmed, we then know that we have taken the positive action of verifying its validity.

Asking questions whenever we need to also yields the benefit of knowing we're leaving no stone unturned and that we're giving it our best shot. If we're running into a stone wall with our medical advisers then going elsewhere may be the best option. However, it's essential to accept that, even with the best will in the world on the part of our doctors, the answers to many questions are still unknown. In those situations it can, perhaps be therapeutic to try a bit of lateral thinking, ask more and different questions, possibly stimulating someone with more knowledge to open a new line of exploration.

In short, rather than be saddled with the thought 'X could happen', have the thought 'well, come what may, our team - me, my docs, my carers, my friends on the forums - are doing Y and Z to avoid X and to improve the chances of a better outcome'.

[Since I wrote this and tried without success to post (it's too long) I see Gary has beaten me to the punch! I hope what I'm saying is complementary to his post and not just empty repetition, but we're plainly saying much the same thing.]

Balance...
Very well stated my friend and I agree the perspective from one who is in the thick of it is of much greater value. Once again I admire your spirit and I am glad you are here even while I wish none of us were!

garym said:

Balance...
Very well stated my friend and I agree the perspective from one who is in the thick of it is of much greater value. Once again I admire your spirit and I am glad you are here even while I wish none of us were!

Balance
Glad to be here Gary, in every sense, and I'm getting closer to your status - clinic this afternoon gave the pronouncement of my multi-disciplinary team that I'm now NED. Looks as though I will, at least, complete my three score years and ten in a few weeks time and, with continuing luck, my horizon may be a good deal further away!

{Post appearing above appeared to have miscarried - sorry to be so tedious.}

Texas_wedge said:

NEDDANCE
Thanks folks. [NEDDANCE def. - celebration of cancer survival.]

We thought summer took place in the UK the day before yesterday and wouldn't be seen for the Olympics. Yesterday in our bit of Scotland was cool, cloudy and wet. But today the sun is shining [and particularly so in my household - I'd like to ascribe the upturn in my prospects to having led a blameless life and being a perfect patient. However, I guess, in truth, it's really attributable to favourable genes and a dose of good luck with this, oh so unpredictable malaise].

Anyway, my aim now is to try to consolidate my position with continued good diet, meditation and plenty of exercise - off in an hour or so to play golf for my former home club's team against my current home club (Carnoustie) on the Championship Course at Carnoustie, in sunshine and on perfect greens!! - not a bad precursor to coming home to a greatly relieved wife, in time for TV coverage of the spectacular Olympics Opening Ceremony taking place this evening in my home town.

For those of us in the thick of battle, please remember that even for us pT4, Stage 4, Grade 4 patients, success is possible. There are many routes, including Fox's (guts and hard work) and mine (good luck) but most routes involve being prepared to learn as much as possible and to fight for oneself as the main member of the defense team. Beating "the statistics" and having plenty of good years ahead is still on, even if you have extensive mets and a lot of pain, like Fox, or sarcomatoid and necrotic histology, like me. Hang on and go for the gold!

Heartfelt congrats. . .
I believe your NED is attributable to explanations far beyond those you note Tex. This post is your #1068 post. 1068 postings represent your reaching out to thousands by answering questions, making recommendations, interpreting results, making suggestions for future treatments, or simply educating. And that’s just on this board—phenomenal!

I strongly believe that when you’re hit with a devastating diagnosis, you are immediately a part of a bigger galaxy. It calls attention to some aspect of your life that needs attention. Your health obviously is one area, but I believe it extends beyond the physical, something even deeper. Perhaps your diagnosis is a way to draw attention to something you have neglected in your life or to your unshared gifts/talents that would have a positive impact on others. And I believe how you respond to that bigger picture can dramatically influence your outcome. By reaching out to others who are confused, lost and feeling alone HEALS YOU. It fills the emptiness of soul that we all feel from time to time when giving back is not a routine part of our life. I’m not saying that you haven’t given back in your life; I’m just saying it’s evident to me and many others on this board that you were needed here and you responded.

I believe your NED reflects your gift to the many out there—myself included-- that have benefitted from your wisdom, your compassion, your patience, your humor and your shoulder.

You follow in the footsteps of big shoes on this board, those of Iceman, Gary, Liz, Fox, and many others who know who they are. As a beneficiary of all you’ve given, I thank you from the bottom of my heart. And my congratulations on a very much deserved NED!