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Wilms tumor, 2cm.Do I have to undergo chemotherapy after partial nephrectomy?

momon
Posts: 2
Joined: Apr 2013

I'm 29,i had wilm's as an adult.i had my partial nephrectomy last April 3,2013..my adult wilm's is stage 1,favorable histology..and its size is 2cm...I don't know if I should have an additional treatment for this...I have discussed this with my doctor but I don't think if he's sure..he referred me to another oncologist and was advised to have chemotherapy for 18wks.I asked for a second opinion..the doctor said I may not have an additional treatment cos it's only 2cm...I don't know what to do...but if I have a choice, I don't want to have chemo becos I'm scared that chemo may have the same damage as the disease.pls. Help me decide..thank u..

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

...the general guidelines for treatment in my own country (Denmark) regarding Wilms tumor. Quoting from our version of the FDA:

"Stage 1 tumor patients should always be considered for post-operative adjuvant chemotherapy due to the related high long term survival rate".

Dont know the general guidelines in the US, but from what I have read you should at least press for a more detailed answer from your oncologist.

/G

todd121
Posts: 495
Joined: Dec 2012

This quote seems to imply that there is a proven chemotherapy that helps. If it were me, and there was a proven adjuvant chemo for my cancer, I'd take it.

The idea behind adjuvant therapy, is that drugs that aren't as effective when there are tumors (because there are millions of cells at that point), are more effective when the cell population is small. If you wipe out some large percentage of cells of a small overall number of cells, you end up with very few cells in the body, and hopefully the immune system will take care of those. Whereas, if you wait until tumors form and wipe out the same percentage, you still end up with a substantial number of cells resistant to the chemo, and the burden may be too large for the body to fight off.

Todd

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

Todd, can you tell where this idea comes from and how it's supposed to work:

"The idea behind adjuvant therapy, is that drugs that aren't as effective when there are tumors (because there are millions of cells at that point), are more effective when the cell population is small. If you wipe out some large percentage of cells of a small overall number of cells, you end up with very few cells in the body,"

todd121
Posts: 495
Joined: Dec 2012

This was the explanation my oncologist uncle gave me for the theory behind adjuvant chemo therapies. I just summarized what he told me.

The general idea was that a drug that might not be 100% effective when the cancerous cell load is large (tumors have started to form), when given while no tumors are visible and the total cell count is small, will wipe out enough to leave a very small number of total cancer cells (perhaps even all of them) that would be managed by the body's immune system. On the other hand if the drug is given later after tumors have formed, the less effective drug will leave behind large numbers of resistant cells, too many for the body to fend off. 

From the way he explained it, it seemed to be the basic theory behind adjuvant therapy. It was one of the ideas that pushed me forward onto doing a drug trial even with a drug that was only showing some efficacy. From what I understood, the studies they'd done with breast and some other cancers, showed that giving drugs that were far less than 100% curative in metastatic disease following surgery/radiation helped drastically reduce recurrence of the cancer and increased survival rates.

It seems related to the idea that they might give a drug or radiation to help reduce a tumor's size, even if they knew it wouldn't kill it, because the body is better off with a smaller tumor load. Or they might remove a large operable tumor, even though they had to leave smaller, inoperative tumors. 

Todd

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

Thanks Todd. I feared there wasn't any real basis for it, which is consistent with the finding that adjuvant therapy doesn't work at all.  The whole notion represents a misconception, which is why most experts say forget the idea.  It's been tried out in many trials and found to be pointless.

Unfortunately what happens with other cancers isn't safely assumed to have any validity for RCC.  The analogy with reducing primary tumor load (which is, of course why we almost all have nephrectomies) doesn't hold either - they are entirely different situations.

todd121
Posts: 495
Joined: Dec 2012

Just so the original question's answer doesn't get lost.  According to this paper:

http://www.ncbi.nlm.nih.gov/pubmed/16314292

There is a well-established, effective adjuvant therapy for Wilms tumor. In fact, the paper says "Wilms' tumor was the first solid malignancy in which the value of adjuvant chemotherapy was established. Multimodality treatment has resulted in a significant improvement in outcome from approximately 30% in the 1930s to more than 85% in the modern era. " Based on this alone, I think I'd listen if my oncologist suggested having chemo if I had had Wilms tumor.

When you say "I feared there wasn't any real basis for it, which is consistent with the finding that adjuvant therapy doesn't work at all.  The whole notion represents a misconception, which is why most experts say forget the idea.  It's been tried out in many trials and found to be pointless. ", I assume you are referring only to RCC adjuvant therapy? I'd be interested in knowing how you come to the conclusion that "most experts" say to forget the idea of finding and adjuvant therapy for RCC? There are several drug companies and many well-regarded RCC oncologists taking part in Phase III trials looking for an adjuvant therapy for RCC using the newest drugs. I'm pretty sure none of the results have been published. I suppose you are talking about many trials in the past using older drugs? I'm not sure how valid those studies were, since the drugs they would have used had very poor effectiveness against metastatic disease. The theory is based on having a drug at hand that is pretty effective (although less than 100%) against metastatic disease.

It may be that RCC is so different that no adjuvant therapy will be found. However, I'm not sure how anyone can say with certainty with the limited knowledge of this disease, that an adjuvant therapy will never be found, or is even likely never to be found. That kind of a conclusion would require a level of knowledge about the disease that doesn't seem to be available, given the lack of success at finding a really effective treatment.

Todd

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

Todd, I'm not feeling too good right now so this reply will probably come over as more tart than I would normally choose to make it - I'm relying on your good sense to make allowances and not to take undue umbrage.

I agree that the original question was to be answered, but we'd already passed that point - G had given the answer very succinctly, with all the information and advice momon needed.  You chose to change the topic to a more general discussion of the rationale behind adjuvant therapy and gave an outline of what you understood that to be. It was, alas, an uninformed opinion and I wanted to know whether you had any scientific support for a view that runs counter to the accepted expert appraisal. It's not helpful to others if we put out misleading information. 

If you wanted to offer more help to momon, it would have been more appropriate to point out that doing a search here would yield many threads devoted to Wilms, including one entitled  "Adult Wilms Tumor"  and another, bigger thread called "I am a 35 year wilms tumor survivor" both of which doubtless contain some info that momon might find of interest.

 

Switching to the new topic that you raised, I must first say again that you're lucky to have your Uncle to bounce ideas off and, from past discussions, he's plainly an intelligent man with good judgment. However, as I recall, he's not a currently practising and up-to-date specialist RCC oncologist  (please correct me if I've misrecalled). 

If you read a bit of the relevant literature, you'll understand more about this subject and wouldn't, perhaps, have needed to pursue the questions you've raised above.  Cancers differ greatly phenomenologically even if we eventually find a common metabolic thread that brings treatments for all of them on to common ground.  Ironically, Wilms and RCC are very different in many respects. Wilms most often manifests in the young, RCC in the elderly and this in itself, with the very divergent anticipated survival periods, makes for different treatment regimens.  There is, indeed, effective chemo for Wilms and it's not surprising that momon would be reluctant to have it unless necessary, since it typically involves old cyto toxics like vincristine and doxorubicin (which we know from RCC circles, where it's particularly applicable to those, like me, with sarcomatoid RCC) is damaging to the heart. Even the more recent 'ICE' combo is not what one would choose for fun.  These are markedly different from the drugs in use now for RCC.

The review of the literature you cited isn't even about adjuvant therapy - it's titled Current therapy for Wilms' tumor and deals with treatment of the primary tumor and treatment of recurrences.  The word adjuvant only occurs twice in the whole of the full text.  The sole suggestion of the possibility of effective prevention of metastases derives from experiments with xenograft models.  The paper dates back to the situation before 2005 so more progress may have been made since then.

I have to go travelling now so can't complete this post but will endeavour to do so later.

todd121
Posts: 495
Joined: Dec 2012

Hi TW,

Hope you feel better. Don't worry about being tart. My skin isn't that thin.

My uncle is not an RCC specialist. He has been retired for about 6 years. He is an internist, and has a background in hematology, immunology and oncology and practiced oncology for the past 30 years. So I feel pretty good about quoting his ideas. It's possible I might misquote or get confused.

I only meant to explain the general idea behind adjuvant therapy as described by my uncle (for other cancers) to help inform moom as to why it might be a good idea to look into adjuvant therapy for Wilms. I didn't mean to imply that this is proven or applicable to RCC. The quote I gave from the paper was to bolster Galrim's answer. I didn't intend the paper to be proof, other than the quote seemed to imply that there was well-accepted adjuvant therapy available for Wilms. I hadn't read the other threads, and I have found the search facility on this website to be so unreliable that I don't bother with it. I've searched for words that I know exist in certain threads, and had those posts not show up in the search results. Once I had that experience, I shy away from wasting time using an unreliable tool.

With regards to my information about adjuvant therapy for RCC, I looked into two Phase III drug trials using votrient and everolimus and was advised by 1 RCC oncologist (Dr. Pal of City of Hope) that it would be a good idea to try it and also saw Dr. Figlin (one of the chief investigators that worked on votrient, I believe) at Cedars Sinai, and they are sponsoring 2 Phase III trials (using votrient and everolimus) and Dr. Figlin said I might try the votrient trial. The implication being that there might be some benefit but we wouldn't know until the trials are complete. I'm also aware of several other trials going on. To me this is proof that there are some pretty good RCC oncologists and a few top drug companies who believe it's possible to find an adjuvant therapy for RCC.

I'm still not clear how you come by the idea "most experts" believe that there's not going to be an adjuvant therapy for RCC found, considering all the trials going on to do just that? Please educate me where that comes from. Until they are certain the mechanism RCC uses to spread/stay alive in the body, I can't see how anyone could claim to know this.

I've heard a quote that goes something like "When a senior and elder scientist says that something probably or most likely is possible, he almost certainly is right. And when a senior and elder scientist says that something is impossible, he almost certainly is wrong." Being certain that there will never be an adjuvant therapy for RCC would pre-suppose a knowledge of RCC that obviously doesn't exist at the current time (otherwise we would have a cure, I'd think).

Best wishes,

Todd

todd121
Posts: 495
Joined: Dec 2012

I don't know about Wilms tumors specifically, so you will need to research it or depend on your oncologist for advice.

Generally speaking, there is no proven adjuvant therapy for RCC. However, I'm aware that there are some for other types of kidney tumors. For example, transitional cell kidney tumors have a proven adjuvant therapy (they use the same treatment as bladder tumors). I'm basing this on a friend of mine that had a transitional cell tumor in his kidney and he was given chemotherapy as a treatment to reduce chances of recurrence.

There are trials going on to try and find an adjuvant therapy that works for RCC. You will have to search for these to see if they accept patients with Wilms tumors or not (or let your oncologist help you find them). I'm involved in a Phase III drug trial for ccRCC using everolimus.

I would not reject out of hand the idea of doing a drug trial. You should first educate yourself on chemotherapy. There are many types and the risks vary according to the type of drug being used. You probably are thinking (as I was before I started studying it) that chemotherapy is always infusions, always makes your hair fall out, always destroys your immune system, etc. That's because of the way the media has portrayed it in films and TV (I think). It's more complicated than that. There are many different types of chemo and some people have little or no side effects. Some are oral medications. Some are infusions. There are different periods of time. Whatever you take, you will be closely monitored and with many of the studies you might get a placebo (which has the appearance of a medication with no active ingredient), but you would still have the advantage of being closely monitored and scanned (maybe more closely monitored than with a standard watch-and-wait approach) and get to know the doctors involved in the studies, which might come in handy later, God forbid, should you need their services.

The trials never give you less than standard treatment. That's required of all trials.

Look into drug trial phases, also, Phase III trials have already gone through testing to see what the maximum/minimum safe and effective dosing should be. Phase I and II trials are for figuring that out (usually newer drugs, or drugs that haven't been used for the purpose at hand).

I've been in this everolimus trial for 12 weeks now. My side effects are so minimal, I'm not even sure if I'm on the drug or a placebo. Even if I'm on the placebo, they weren't going to give me any treatment anyway, so there's no harm. I get my blood tested every 6 weeks and every 18 weeks I get CT scans of my lungs/abdomen and pelvis. I'm getting to know one of the top RCC doctors in the U.S. I feel much better about this approach than my alternative, which was to have scans every 6 months by my urologic oncologist, who is great at surgery but knows nothing about metastatic RCC. If I'm on the drug, there's a chance it will delay or reduce recurrence of my RCC. I feel pretty confident it won't cause recurrence of my RCC, so if the RCC wasn't going to come back, I doubt it will because of this treatment. There is some risk of serious side effects, but  that's why I'm being closely monitored.

There was another trial I was looking at that uses votrient.

Do a little research and talk to your oncologist. You really should be speaking to a specialist on your type of cancer to make the decision. I would not trust a general oncologist with getting you the information to make this decision, unless you feel they are going above and beyond (they are spending a lot of time on their own researching this type of cancer). You don't want a general oncologist shooting from the hip on this decision. The (RCC) field is too fast changing. There is a LOT of research going on and there are many new drugs available, and if they aren't up on it, they will not be helpful in educating you.

Todd

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

Lets not go into the general discussion about adjuvant therapy and RCC here, but stick to the original posters question? Wilms tumor differs from other RCC types in so many ways.

Its pretty clear that Wilms tumor is *the* exception per se when it comes to both chemo and adjuvant therapy.

So to get back to the original question and repeating my own answer, yes I think you should press for a detailed and well-founded explanation as to why you should *not* have adjuvant chemotherapy and maybe get a third opinion.

All pages I look up refer more or less to the same treatment regime, one example:

http://www.mayoclinic.com/health/wilms-tumor/DS00436/DSECTION=treatments-and-drugs

And an overview from wiki, the table at the bottom:

http://en.wikipedia.org/wiki/Wilms'_tumor

/G 

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

G, as I said, I moved on to the topic Todd raised on the understanding that you had already provided Momon with as good an answer as any of us is qualified to offer.  We really cannot advise and even his own doctors are finding it difficult in the present state of medical knowledge, given the extreme rarity of Wilms (all the more so in adults).

Momon's reluctance to undergo even the standard 18 weeks treatment with the classic trio of cyto-toxic drugs is very understandable but you are undoubtedly right in counselling getting as many further opinions as necessary and a clear explanation of the pros and cons of the proposed systemic treatment.  It's especially important to get the best possible information for the rare adult situation.  (I did give links for Momon to the 2 threads we have here that are devoted to the subject.)

 

That said, I think it's important to tease out the potentially misleading impression Todd may have given in his rationale for adjuvant trials as it applies to RCC, as opposed to Wilms.  To his credit, Todd has made it clear that he was speaking generally about the theory behind adjuvant systemic therapy and what he says in respect of Wilms I entirely agree with.  However, he has extended the rationale (on threads other than this one) to targeted therapies for RCC where it signally fails to apply.

The nub of the issue is well brought out in this well-reasoned passage from Todd's latest post here:

"I'm still not clear how you come by the idea "most experts" believe that there's not going to be an adjuvant therapy for RCC found, considering all the trials going on to do just that? Please educate me where that comes from. Until they are certain the mechanism RCC uses to spread/stay alive in the body, I can't see how anyone could claim to know this."

There are two points I'll take up.  The first is that in respect of targeted therapies it's not the case that the jury is still out.  The subject was done to death at last year's MDA Conference in Texas, where the data were given from the various trials that have already been completed with a number of targeted therapies, establishing, it was suggested, beyond a peradventure, that none of the targeted therapies confers any benefit at all in preventing recurrence of RCC.  This is based on the work of the top experts in the RCC field in trials they have completed on this matter.  [The fact that others are still finding occasion to pursue this line may say more about their motivation than about the justification for doing so.]  

This, of course, says nothing about the possibility of a cure for RCC or about the probability of finding other forms of intervention that may prove effective in preventing RCC's recurrence. 

However, it's not accurate to say that no-one has any idea as to how RCC stays alive and spreads in the body.  The broad outlines are well-established and not contested.  (But you're probably aware that in the many thousands of posts I've made on this and also on various other kidney cancer forums I've frequently expressed my conviction that we've scarcely begun to scratch the surface of the multitude of deeper issues.)  There are three ways in which RCC spreads - by direct expansion of tumors, encroaching on adjacent tissues (local or regional spread) and by dissemination via the circulatory systems (lymphatic and bloodstream).  Tumors sustain themselves, once reaching critical mass, by laying on their own blood supply and it's this aspect that targeted therapies address. (I recall that Neil made this point to you recently, on another thread.)

There is no way that targeted therapies can, generally (some drugs have putative additional mechanisms of action) prevent recurrence by killing the millions of circulating cells, as you hypothesised, simply because they don't attack cancer cells - they're not designed to do so - they take the indirect route of destroying tumors by starving them of their blood supplies.  The drugs that attack cancer cells are the old chemo drugs - the cyto-toxics that also attack our healthy cells (especially the fast-dividing ones) such as those used against Wilms, which is why drugs such as Adriamycin (doxorubicin) have such nasty side-effects such as irreversible heart damage.

I hope this explains more fully the remarks I made higher up in the thread. As you know, I respect the intelligence and ability of your Uncle, whom you're lucky to have to help you, but I felt it desirable to clarify the inapplicability of the notion of adjuvant therapy, to obviate recurrence, when it comes to targeted therapies for RCC.

 

todd121
Posts: 495
Joined: Dec 2012

This helped me understand a great deal better what you meant.

In fact, when I was getting advice about which of the two trials to go on, my uncle mentioned this exact issue and what he said is in agreement with what you've said. Dr. Figlin had suggested I go on the Votrient trial while Dr. Pal (a much younger man and Dr. Figlin's protege) suggested Everolimus. I was leaning strongly towards taking Dr. Figlin's advice (which he was not inclined to explain to me why he felt Votrient was a better choice than Everolimus) strictly because he's such a giant in this field, but my uncle told me that there wasn't science to support Dr. Figlin's advice. In fact, there was no science to choose one over the other. That made the choice for me very difficult.

My uncle did say he believed Votrient was not likely to prevent recurrence because it acted systemically and not at a cellular level. He said his feeling was that Everolimus, since it acted at a cellular level, might be more likely to prevent recurrence. However, he said that the best I could do was look at the advice of these two oncologists and choose. I chose Everolimus on the advice of younger, less experienced RCC oncologist who argued mainly that the side effects were going to be more tolerable and I was more likely going to be able to stay on it for the full year. There's not a great chance this will deter recurrence. I understand that. There is a pretty good chance, however, that it might delay recurrence (if I was going to have it recur during this first year). If they find that it does delay recurrence, then it could be that they would give this after a radical nephrectomy to people like me until it doesn't work. Anything to push things out is good news for us.

I may very well be on the placebo, which is quite ok. My last round of blood work was all pretty normal. Usually Everolimus causes rises in triglycerides, drops in WBC, and increases in creatinine among other things, and I'm seeing no changes to my blood chemistry. If I am on the drug, I'm experiencing nearly no side effects in terms of blood chemistry.

Best wishes,

Todd

P.S. Do you have theories about the motivations of the doctors and drug companies that are continuing to study these drugs as adjuvant therapy? Is it merely hoping that it might show some delay effect and that might be a good enough reason to give it to patients after a nephrectomy? Or are you considering other reasons for these studies to continue? I'm always curious about what motivates people to do what they do. I tend to have a naive mind that doesn't consider motivations of others who have different values than I do, and am always surprised to learn new things.

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