Why Im Not Doing Chemo
Comments
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.....all seems better in morning-light - I really do believe it is fibrocystic -
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Anandagram,
Partly because it is true that the first couple of years out are the riskiest, any sign or symptom is more important to investigate. I don't know what the outcome will be for you with the mysterious lump, but I did find personally that the first 2-3 years out was the most difficult in terms of mysterious lumps, aches and pains just because it takes time to get to know one's own personal anatomy well enough to pick up on what is a likely problem or not.
At one point I noticed that my shins are particularly painful to any pressure at all, so even though I never felt my onc was helpful, I asked him about it. I hadn't brought any other concerns to him before then. He told me "it might be arthritis". I was so puzzled by that, that I mentioned it to another internist I know. He laughed out loud, and said that sometimes docs ignore the question and just pass it off (arthritis affects the joints). To this day I still can't rest one leg on top of the other shin because it is so painful. But I don't forget how easy it is to confuse patients, either. (My onc never bothered to tell me I was HER2 positive either, so it was par for his course.)
A.A.
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A A: Sometimes my shins hurt when I've done a lot of walking exercise on pavement rather than the treadmill. I think it's called shin splints. It can be painful and used to wake me in the middle of the night.
My PCP visit today ended up with a referral for a heart echo and a cardiologist app't next week. Also, my liver enzymes were elevated so those tests have to be repeated. It's hard to keep a positive attitude when you keep getting less than positive news. RO app't is this Friday and app't with other onco is next week to get results of oncotype. I've never visited so many doctors in my life in such a short time!
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Kaara - my DH had elevated liver enzymes, but it was due to taking Glucosamine/Condroitin. He was having a routine liver panel and both his ALT and AST were elevated. Doc had him discontinue the joint supplements and the panels were normal within two weks. It is a rare SE and I don't know if you take Glucosamine/Condroitin, but just wanted to let you know that. Hoping it is something easy to solve!
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AA asked a couple of pages back about survival stats comparing zoladex with ooperectomies. I specifically asked my onc that question when I was torturing myself over a decion and he said there are no studies on this. Naturally. When I asked about the study indicating that women who do not have the BRCA mutation who have their ovaries removed face a shorter lifespan, he didn't seem to give that study much credence, though he did say "we don't like to remove perfectly healthy body parts when we don't have to." He said he was very comfortable with my decision to keep my ovaries but if I had more positive nodes he would probably have recommended I have them removed.
Which doesn't leave us anywhere except hat it is a difficult decision without a whole lot of scientific guidance.
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Kaara,
Elevated liver enzymes are more common among middle-aged and older women in general, due to "fatty liver", which is what I was told at time of treatment that I have. Hope yours turns out to be a benign issue, like mine.
A.A.
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Member_of_the_club,
Thanks for the response. I tend to leave the existing anatomy alone as a rule too, which is why I still had mine at time of dx, about 3-4 years after my hysterectomy (and I still have whatever ovarian function wasn't annihilated by chemotherapy). Age at time of decision-making makes a major difference too, in deciding whether to have the ovaries removed or to do chemotherapy.
I just think it is not ethical not to do the studies of comparison/show the results of comparison, and thus avoid allowing women to decide for themselves whether they would prefer removal of the ovaries as compared to doing chemotherapy. But since we are not allowed to know that information (becuase it is not included as an option at sites such as Adjuvant Online), it is more difficult. It also serves the purpose of keeping us all focused narrowly on choosing ONLY between doing hormonal therapy and doing chemotherapy and/or hormonal therapy, because most of us don't even realize that choice exists. I think it is paternalistic, dishonest and manipulative.
A.A.
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There are a lot of things I wish they would study more closely, like soy. How can it be that we get diametrically opposed recommendations on soy in the diet? Because, really, no one knows.
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Thanks for the feedback on elevated liver enzymes ladies....I didn't know what to think when my doctor told me this because my last tests a year ago were fine. She's repeating the test to make sure.
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Kaara, I hope it was use that asked about the rads & heart tests. I have had rads 3 times on the left side of my chest and have been fortunate with no heart issues. I went into the rads blindly not worrying about consequesnces upon my first dx in 1998 but I was in my 30's and was only concerned about living and watching my children grow old. I hadn't had the benefit of the net and all the information out there now. I would definitely talk to more than one rads onc and ask their opionions. I have a great rads onc and we joke now that she spot welds me, when something pops up she irradicates it! LOL Rads have come such a long way and they are able to be so precise with these things they can do amazing things. I know my last rads were tricky and they used mirrors or something like that to bounce the rays so they could hit the tumor without hiting my heart or lung. It was risky but right now my life is all about risks and trying to choose the right ones.
Eve, I'm so sorry to hear about how you got your RSD, that is just such a viscious illness. My brother's started out from a work accident, a box of bolts broke open when he lifted it and all the metal landed on his foot and broke his big toe. You would never think he would end up disabled from that accident but he has. No one wanted to admit to the dx because it was a workers comp claim and his has spread alot in his body. He has it in both feet and legs now and it still seems to be moving. He is just so miserable that my heart breaks for him. We used to talk alot because he knew I understood his pain and suffering. He would tell me that he felt I was lucky because I at least knew that cancer will kill me and I know I will be out of my misery at that point. He could live his whole life and knowing he has to wake up each and every day in pain with no ending in site is just misery. For him to make a stmt like that, I know he suffers so I'm have to say I do understand your reluctance and wanting to make choices towards alternative after something like that. My hats off to you to get through all you have!
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LuAnn, I know a lot about RSD. I read a lot about it after dx with it. It started up my right arm, to my left and the calf of my right leg. I was in stage 2 when dx with it. I did the pain blocks (about 7 of them) some helped, most didn't. Physical therapy really helped. I learned how to control it and as a result it is no longer in the arm, or in the other limbs...other than the right wrist and hand it began in. I don't know if this will help your brother, but this is what helped me.
Swimming at least twice a week. First I would get in the hot tub for ten minutes and then into the cool/warm water for ten minutes. I would go back into the hot tub for five minutes and then back into the pool. In the beginning I did it almost everyday as we had our own pool at that time. When I get into a pain cycle I put my hands into warm water for a few minutes then cooler water...back and forth for about 15 minutes. If the pain gets bad I take a nerve pain pill and all that together breaks the pain cycle. The other thing that helped me is deversion. I keep my mind busy, either writing, or doing something creative. It really works. I can't log onto the RSD Internet sites without it effecting me negatively. I stay away from it and anything that stresses me out. Stress seems to aggrivates or trigger the syndrome.
What concerns me now is the Tissue Expander in my breast is polking a nerve. If I move the wrong way I get these sharp pains. Having the TE for six weeks or more might trigger the RSD syndrome. The reason I chose the plastic surgeon I did was that he uses botox on your pec muscles to paralize your muscles so you won't have pain or spasm. I stay on the pain meds mostly to prevent rsd recurrence or spreading in the chest area. So any therapy that affects nerves in a negative way can trigger rsd.
I've known someone who had rsd so bad that they were in tears 24/7 hours a day. The pain was so severe they comtiplated sucide. The pain doctor (anesthesioligest) who saw me last Spring said it is a miracle my hand looks as good as it does and I' now only have mild burning in it. I suppose mine is more or less now in remission although the right hand is still locked.
When we consider cancer treatments, we need to remember that most of us most likely have different senerio's or problems that could be worsen by chemo or rads...such as myself. So...for that reason, we need to look for alternative ways to treat our cancer so we don't end us with something else that could debiliate us. I suppose I have a problem with the term "standard" cancer treatment when we are also individual. Also...finances was once a deterence to "standard" care...but after reading about it side effects in regard to nerves, I knew it was something I would never do...and suppressing the immune system too.
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Eve, I'm pulling our discussion over here from the December 2011 Surgery thread. What you wrote there yesterday about staging is really interesting and has me thinking.
"What is ridiculous about staging is that there are so many variables in staging that can make a difference in treatment plans. For example, last March with low grade 1, IDC mucinous, 1 C I was staged 1. It was a very slow and favorable type of cancer. The cancer I had last March rarely goes into the nodes or mets. This time, my bs stage me the same, except this time I'm IDC 2 C by 1.8 C grade 3 with the HER2+++(only surgical pathology). Both are stage 1a, but very different cancers.
The lumpectomy alone with wide margins was enough for the grade 1 stage 1 cancer. But, the recent dx due to idc, grade 3 and the her2+++ factor "standard care" is chemo/herceptin/tamoxifen.
Same grade 1a, but one is not so serious and the other one serious?"
Yes. Both cancers are Stage IA and one is serious and the other is not. Does that mean that staging is all screwed up and meaningless? Maybe a bit. But maybe not as much as it seems. There's no question that there are many important variables that aren't considered in staging. Examples include grade, ER/PR status, HER2 status, single focus vs. multi-focal, total size of all tumors, margin size, age of patient. Each of those factors has a potential impact on treatment and prognosis. Is staging therefore irrelevant because these factors are not incorporated?
I don't think so. My understanding is that staging is based on long-term data that groups together different diagnoses based on prognosis. Yikes. I'm in trouble now. Many on this board believe that staging is relevant only for treatment decisions; there has been much discussion about whether or not staging is an indicator of prognosis and the consensus among those who discuss this on this board is that it is not. I have disagreed before and I've gotten myself into deep trouble. And here I go again. My understanding is that staging (as it is today) is not all that relevant for treatment decisions but instead is more relevant to prognosis. Why do I believe this?
Let's look at Stage I. Based on current treatment guidelines, Stage I treatment can range from surgery alone to surgery, chemo, Herceptin, radiation, and Tamoxifen/AI. The treatment recommended is based on all those other diagnostic, biological, pathology and personal factors that I listed earlier that are not incorporated into staging. Similarly, you could have someone who is Stage IA whose recommended treatment is surgery, chemo, radiation and an AI and you could have someone who is Stage IIIA who is given exactly the same treatment recommendation. So stage doesn't seem to play much of a role in the treatment recommendation.
But what about prognosis? This is where it gets really interesting. It's certainly true that your first Stage IA diagnosis was very different - and significantly less serious - than your second Stage IA diagnosis. Without treatment, the prognosis of these two diagnoses would be quite different. But after undergoing the appropriate treatment for each specific diagnosis, the prognosis of each diagnosis becomes similar. As an example, I have read that while HER2+ invasive cancers are extremely aggressive and high risk to develop into mets, with chemo and Herceptin the risk can be lowered to the same level as if the cancer had been HER2-. This means that the long-term prognosis of a Stage IA HER2+ cancer is similar to that of a Stage IA HER2- cancer, after the appropriate treatment has been given. So it's not that the stage of the cancer determines prognosis in isolation of all other factors (grade, hormone status, etc.). Nor does the stage determine prognosis without consideration of treatment. The very positive long-term prognosis that is associated with having a Stage IA breast cancer is based on the assumption that the cancer was treated appropriately - and what is considered appropriate treatment will be very different for an individual with a low risk Stage IA cancer versus someone else who has a high risk Stage IA cancer. But once treatment is done, the prognosis of all Stage IA cancers on average fall within the same range.
The second factor that I mentioned above is that staging is based on long-term data. What this means is that although staging guidelines are changed and updated, these changes may lag our knowledge and understanding of BC because it takes years to gather long-term evidence. Here's an example. Late in 2010 the AJCC Staging Manual was changed, retroactively to January 1st 2010, to separate Stage I into Stage IA and Stage IB. Until then, there was only Stage I. This change was made in recognition of the fact that those with <2cm tumors who have nodal micromets do not have the same prognosis as those who have nodal macromets. Previously, any level of nodal involvement beyond ITC (isolated tumor cells) automatically moved a patient to at least Stage II. This was changed because a study of data over a 10+ year period showed that those with nodal micromets have a long-term prognosis that is better than those who have full nodal involvement and is in fact only 1% lower than those who are node negative. So rather than keep those with micromets in Stage II, this is what prompted the creation of Stage IB. To me, this shows two things. First is that it takes a long time to make a change - they needed 10 years of data to be certain that this change made sense and it took several more years to analyse and interpret the data. The study that initiated this change was started in 1992. Second is that this confirms that staging is tied to prognosis, because this change was made specifically to reflect the better prognosis of those with micromets.
So is staging perfect? Far from it. But I think that if staging is understood and used properly, it does make some sense and it does provide useful information, particularly for doctors. However it should be understood that staging isn't the be-all and end-all and it doesn't incorporate everything we know about breast cancer. No one should think that staging is the single criteria that determines their prognosis. Nor should anyone think that their prognosis is based on their stage, independent of or irrespective of treatment.
One last comment. In your most recent post in this forum you said that "When we consider cancer treatments, we need to remember that most of us most likely have different scenerio's or problems that could be worsen by chemo or rads". I don't agree at all. If most people had these problems then the percent who suffer from serious and long-term side effects from chemo and radiation would be much higher than what we actually see. It's because most people don't have long-term side effects from these treatments that these treatments have become the standards of care. Treatment standards are established and/or changed only after a careful assessment of benefits vs. risks. However, I certainly believe that the "standard of care" needs to be considered only as the starting point in making treatment decisions. Treatment decisions need to be individualized and if a patient does have other health issues that put them at greater risk from a "standard" treatment, then this needs to be factored into the treatment recommendation. Anyone who goes to an oncologist who does not do this should change oncologists.
As you can see, you got me thinking!
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Hi Beesie,
I understand your points on prognosis and treatment decisions. However, the staging for making recommendations in regard to HER2 positivity is a mess because it lacks genuine definitive analysis by clinical trial for HER2-positive patients in relation to early stage patients, PLUS thus far they have failed to analyze what effect trastuzumab used alone (in conjunction with an intact immune system and far fewer support drugs) would have for HER2-positive patients.
A.A.
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AA - I'm sure, depending on the results of the over 70's trial for Herceptin alone, that they will then look at trials for younger patients. In the mean time, they obviously don't think it's worth the risk to the patients.
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Thats a lot to chew on...and will do before commenting.
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I agree with Beesie - being Stage 1 does not have a lot of bearing if it is HER2+ve - that is the big game changer.
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AlaskaAngel... You mention the staging for making recommendations for Her2 + are a mess because it lacks definitive analysis.... That can be said about a lot of the various types of bc. With mucinous breast cancers there is very little definitive research to guide our treatment. More often than not, the only research done to guide our treatment is based on meta and retrospective analysis. At the end of the day, the bottom line is... They created a system to guide treatment and prognosis that with all it's warts, works AND it evolves. As Beesie mentioned, years of analysis goes into the making of staging guidelines and prognosis. I firmly believe that one day soon, we will no longer need these maddening guidelines because genetic testing will usurp EVERYTHING. Until then, make no mistake about it... despite the limitations of the staging and treatment guidelines, WHICH THERE ARE MANY, it gives reliable information, IMHO.
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voraciousreader,
Well, maybe you are right, and we all should endorse following the rigid guidelines emphasizing early treatment with toxic therapies for the majority of patients in all stages but 0. That way we can be sure the children of today will be able to get in on it tomorrow, like us.
I never have understood the motivation for research and practice to develop anything better when patients are so willing and so happy to endorse continuing to use the present rigid staging system. "Despite the limitations of the staging and treatment guidelines, WHICH THERE ARE MANY, it gives reliable information, IMHO."
The present staging does provide an official way to prolong avoiding doing the trials to demonstrate whether or not trastuzumab alone would be effective for smaller HER2 positive tumors, and also to avoid doing the trials to demonstrate whether or not alternative methods of ovarian ablation by other than chemotherapy would be a logical option for smaller tumors. Why would we want that when we have the option of mandating chemotherapy for it? Does it matter if most of the world can't afford to follow the guidelines?
Trastuzumab plus chemotherapy has been standard therapy now for adjuvant treatment for HER2 bc for 7 years. We all understand that the current staging system gives reliable information, so why not support maintaining the status quo for a few more decades?
Does that seem reasonable?
A.A.
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AA... Nothing is mandated. And, I will speak for myself by saying, I was less than overjoyed to find out that most of the recommendations for treatment for my type of breast cancer were never validated as conclusively as they were for other breast cancers. Furthermore, with my type of breast cancer, the concern is for over treatment. Without a doubt there are many variables that need investigating when determining guidelines and treatments. But to imply that only the research involving HER2+ tumors is "messy" is way off the mark. There is lots of evidence and information about all kinds of tumors and every day there is research being done in the areas where the info and evidence are lacking. And like I said, I foresee the day when this present staging system will be usurped by genetic testing. In the meanwhile, until genetic testing and personalized medicine rule the day, the current system, while not perfect, is a work in progress, as Beesie so eloquently pointed out.
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We are in agreement that HER2 bc is not the only type of bc that is messy, but I never indicated that it was.
What change in treatment do you see in regard to mutation, based upon the genetic testing that will usurp the present staging system? And what generation is it likely to apply to?
A.A.
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AA, I'm confused by your comments about Staging and HER2 clinical trials. Staging and treatment guidelines are two different things.
In fact treatment guidelines usually group together several different Stages. In the NCCN Guidelines (physicians version), the same treatment decision-tree is used for Stages IA, IB, IIA, IIB and IIIA (T3, N1, M0). http://www.nccn.org/professionals/physician_gls/pdf/breast.pdf See pages 11 - 23. Since this is the physician's version, you need to register to be able to view the file.
The National Cancer Institute lists together the treatment options for Stage I, Stage II, Stage IIIA, and Operable Stage IIIC Breast Cancer. http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page6
Stage classifications, on the other hand, include no reference to treatment. Staging also includes no reference to HER2 status or to whatever the appropriate treatments might be for those who are HER2+. Nor does it include any reference to ER status, PR status, grade, etc.. http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page3
My point in my earlier post was that breast cancer Stages group together diagnoses that have a similar prognosis following treatment - whatever the appropriate treatment might be. This is why two seemingly different diagnoses can both be the same Stage. Each diagnosis may require a very different treatment but after treatment the prognoses are similar. Another point I was making was that one cannot look at one's Stage and make assumptions on what treatment may or may not be necessary - there are many other factors that are more important in determining treatment plans.
The issue of determining the appropriate treatment is a different and separate discussion from Stage.
Edited to Add: I do think that the current staging system will be thrown out (or might become obsolete) when the day comes that treatments are so personalized that all women diagnosed with BC have a similar prognosis regardless of the specifics of the diagnosis. Then it won't matter if you are Stage IA or Stage IIIC because there will be effective treatments for all of us. That will be a good day!
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Beesie,
First --
I'm not a physician, so I am using the NCCN guidelines for patients. I am confusing to you and you are confusing to me... I'm not sure how to clear up the confusion from each direction. For some reason you think staging is limited to describing the physical characteristics of the cancer to decide what the usual outcome is for those characteristics and that is all that the characteristics are used for, nothing else. Then the information about characteristics is not used for the process of determining treatment because staging is "different" than a guideline. A guideline doesn't use physical characteristics as the basis for the guideline? And therefore the physical characteristics are unrelated in any way to the guidelines for treatment recommendations, or at least that is what I think your statement says.
Your statement: "Staging and treatment guidelines are two different things."
The NCCN Guidelines, page 26:
"The information from each TNM category is combined to assign the cancer a stage (Table 2). Each stage is represented by roman numerals ranging from 0 to IV. The stages identify tumor types that have a similar prognosis and thus are treated in a similar way."
What I am saying is that the literal interpretation of that is, that the TNM characteristics define each person's stage, and the stage IS related to both the prognosis AND the treatment because the stage identifies the prognosis and results in the treatment recommendation.So, prognosis by stage = the treatment assigned.
Second --
What I am saying is that by using the tumor characteristics to assign a stage, which then identifies the prognosis and results in a standard treatment recommendation, the result always will be in favor of assigning the standard therapies for treatment that has never even been accurately justified in the first place, for example, in terms of the recommendations for the various classifications of stage I.
So to me, that says that it really doesn't matter what the basis is for the actual treatment recommendations, or what trials were done or not done in support of the treatment recommendations, as long as we assign a stage and prognosis according to tumor characteristics and then use that to assign the matching standardized treatment.
????
A.A.
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This staging conversation is interesting. Thanks Beesie for giving to why they stage a seeminly favorable cancer grade 1 to a more serious grade 1 dx.
However, I do think the staging is all messed up and needs to be changed. The person with grade 3 and the HER2+++ even with treatment doesn't mean that the prognosis or outcome will be as favorable as a stage 1 with a grade 1 and her2-. Surgery alone for most grade 1 with the HER2- is enough or rads. From what I've been told even with "standard" treatment for the more aggressive cancer stage 1 with "standard" treatment 15% treated will have a recurrence where this is not the case with the more favorable stage 1 cancer (with standard treatment).
My opinion is that the HER2+++ factor needs to be considered in staging...also the grade 3. I've read too many stories here on bco where women with the more aggressive stage1a cancer within a year even with treatments are dx with stage IV cancer. That rarely happens with the grade 1a treated by mx, lumpectomy or rads. So the reasoning that they are staged the same based on final come doesn't compute with me. Stage 1a for the more aggressive cancer can give false hope that stage 1 is not serious, when in reality it is.
I have no problem being stage 1a, but I'm smarter now than I was 4 yrs back. I then would had assumed by being stage 1 that , "hey, your're lucky, you're stage 1," and you're going to be ok. Now staging means little too me. Formally, the stage 0 gave me false hope, even with the whole grade 3 that with wide clear margins the odds were I would not have a recurrence.
I also think so many bc women coming to bco don't quite get the whole staging thing anyway. I read under stats bc women dx with DCIS grade 1 stage 1 with her2+. We both know that DCIS is not stage 1. Others stats I've read might be stage IIb, grade 1, her- micromets of 1 node. The micromets might had been from the biopsy...yet the bc woman with that dx maybe overtreated. Another senerio, someone dx with 4 c of DCIS, no nodes, lower grade and they are stage IIB or IIIa... due to size. If this was the case for me my second dcis was too large too size ... 100% DCIS. Yet, because it was all DCIS I was stage 0. Another surgeon or oncologist may grade it higher stage to size or maybe microinvasion.
Beesie, just saying I think there is a lot of confusion about staging on the bco boards, which either give false hope the odds are the same making it for over or under treatment due to staging.
Maybe we should copy all this staging conversation and open up a new topic, "Staging Confusion"...what do you think?
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Page 58:
"The treatment guide is organized by clinical stage...."
The refreshed reading of the guidelines was interesting. As a reader who has experienced NCCN treatment recommendations, it is clear that the emphasis and meaning of the NCCN guidelines for patients is so selective in being limited to information that understates the realities involved with the guideline recommendations.
Page 35 of NCCN patient guidelines:
"If you had surgery for early stage breast cancer, it is impossible to be 100% sure that cancer cells did not spread before surgery. If they did spread these cells could grow to become metastatic breast cancer. The goal of systemic adjuvant therapy is to prevent this. Except for women with very small tumors and low risk of recurrence, mot women with invasive breast cancer receive systemic adjuvant therapy."
So one wonders, what is systemic adjuvant therapy as defined by the NCCN patient guidelines?
Without ever defining what the term "systemic adjuvant therapy" means, the text goes on to describe chemotherapy at some length, which implies that chemotherapy IS the entire definition of systemic adjuvant therapy:
"Chemotherapy is the use of drugs to kill cancer cells. When talking about chemotherapy, many people commonly refer to it as 'chemo'. It is given orally as a pill, or intravenously into a vein with a needle..." "... Chemotherapy is given in cycles of treatment days followed by days of rest."
Then a chart of SERMs and aromatase inhibitors and the drugs used for what is generally considered chemotherapies are all listed together, even though the description of chemotherapy provided does not apply to SERMS, AI's or ovarian ablation drugs. The term "systemic adjuvant therapy" never is defined for the reader. Much farther on, on page 70 it is still vaguely implied by the chart on page 71 to be (again) limited to chemotherapy. However, "systemic treatment" is defined, to mean "Drugs used to destroy cancer cells throughout the body." In addition, there is the statement, "For the smallest of these tumors with no cancer cells found in the lymph nodes, no adjuvant treatment is needed." So again, "systemic adjuvant therapy" is implied to mean only chemotherapy.
On page 72, the use of hormonal drugs includes the title "Adjuvant treatment", and on pages 76, 77, 81, 84, and 86 the term is similarly used to refer to non-"chemo" as well as chemotherapy; but the term systemic adjuvant therapy is never defined.
That is then followed by sections that describe the use of hormonal drugs, followed by a section on targeted therapy.
Page 40:
"NCCN believes that the best management for any patient with cancer is in a clinical trial."
??? I've been in some clinical trials myself, and do continue to advocate for some, but that is a pretty remarkable assumption and statement to make in introducing patients to how every cancer should always be treated.
Page 46, 47:
I'm truly appalled and disgusted by the section dealing with side effects. It is ludicrously inadequate, considering that the majority of cancer patients are over the age of 50 and the vast majority are over the age of 60, and there is zero discussion of the many dramatically aging and sexual side effects that are overwhelmingly common for those patients (and for many younger patients as well.) One tiny brief paragraph on page 55 is devoted rather vaguely to minimizing the possibility of those problems.
Clearly, no one who has actually followed the guidelines as a cancer patient had much (if any) influence on the writing of the guidelines.
A.A.
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I just resigned from a research study I was going to participate in. I would be taking two chemo drugs orally and aspirin (due to the possibility of blod clots). What was I thinking when I signed up for the damn thing! I had just been told that I had an incomplete response to all the chemo I suffered through, so I guess I was grasping at straws. I have read the project outline several times - each time, I see more inuendos of what would be coming, for example, "additional medication to manage side effects" - oh yeah- I know what that indicates, STEROIDS!!! Never, ever again will I take steroids. There would also be scans and tests, etc. that I will not submit my body to, especially since the same research in Europe showed no significant decrease in recurrence.
Have any of you had a breast MRI? It has never been mentioned to me by healthcare profs. I just read about it on another thread. I will refuse if one is suggested - I will not subject my body to more dye! I will, relunctantly, have a mammo in May, but no more radiation - no more!
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....My MO had not even bothered to read my path report at my post surgery exam - he thumbed through it and apologized. I was so disappointed - my post-surgery path report was what I wanted to discuss!!! I got a copy and researched it all myself. He did, however, shove four research projects in front of me that some tumor committee had "invited me to join" due to my incomplete response to chemo. Guess I was a prime research lab rat due to that diagnosis! In all fairness, my MO did tell me that I did not have to feel pressured to do any study, but suggested that if I did, the oral chemo one would be the one he would do. He told me that he was just obligated to tell me about the invitations. He actually did tell me that so far the oral chemo had not done anything to improve outcomes. It's okay now - invitations not accepted!
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,,,,just ranting outloud....wouldn't you think that my MO would have had me wait a few mins. more in the room while he thumbed through my path report at the desk instead of fumbling through it in front of me? Oh well, at least he was honest!!! I found the term, "possibly metaplastic" on the last page of the report. I could not believe he did not discuss that with me!!! OK, enought ranting for this a.m. Off to get grandchildren on the bus!
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989652/?tool=pubmed
Patholog Res Int. 2011; 2011: 825627. Published online 2010 October 26. doi: 10.4061/2011/825627 PMCID: PMC2989652 Copyright© 2011 Mathew Purdom et al.
Should Histologic Grade Be Incorporated into the TNM Classification System for Small (T1, T2) Node-Negative Breast Adenocarcinomas?
Mathew Purdom,1 Michael L. Cibull,1 Terry D. Stratton,2 Luis M. Samayoa,1 Edward H. Romond,3 Patrick C. Mcgrath,3 and Rouzan G. Karabakhtsian1*
"In this era of mammographic screening, however, an increasing proportion of identified breast cancers are small and node negative. Whether or not histologic grade is an independent prognostic factor in small, node-negative IDC is still an unresolved question [10]. The Breast Task Force of the AJCC has noted that the data on this issue are sparse and inconsistent, and as such, it refrained from directly including the histologic tumor grade into the TNM staging."
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Abstract:
Prognosis of invasive ductal carcinoma (IDC) strongly correlates with tumor grade as determined by Nottingham combined histologic grade. While reporting grade as low grade/favorable (G1), intermediate grade/moderately favorable (G2), and high grade/unfavorable (G3) is recommended by American Joint Committee on Cancer (AJCC) staging system, existing TNM (Primary Tumor/Regional Lymph Nodes/Distant Metastasis) classification does not directly incorporate these data. For large tumors (T3, T4), significance of histologic grade may be clinically moot as those are nearly always candidates for adjuvant therapy. However, for small (T1, T2) node-negative (N0) tumors, grade may be clinically relevant in influencing treatment decisions, but data on outcomes are sparse and controversial. This retrospective study analyzes clinical outcome in patients with small N0 IDC on the basis of tumor grade. Our results suggest that the grade does not impact clinical outcome in T1N0 tumors. In T2N0 tumors, however, it might be prognostically significant and relevant in influencing decisions regarding the need for additional adjuvant therapy and optimal management.
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- Abstract:
1. Introduction:
While the World Health Organization, College of American Pathologist, and American Joint Commission on Cancer all endorse reporting histologic tumor grade for IDC, it does not directly factor into the current TNM staging system [1-3]. The Nottingham Combined Histologic Grade (NCHG), the preferred grading system, stratifies tumors into three grades based on semiquantitative evaluation of tubule formation, nuclear pleomorphism, and mitoses [4]. Histologic tumor grade, as determined by NCHG, correlates with prognosis [5] and might represent a simple and inexpensive way to identify low-risk patients who are highly curable by surgery alone or are also in need of adjuvant therapy [6, 7]. Patients with large tumors are almost always candidates for adjuvant therapy, so incorporating histologic grade in such cases may be clinically irrelevant [8]. Also, tumor size often correlates with tumor grade [9]. In this era of mammographic screening, however, an increasing proportion of identified breast cancers are small and node negative. Whether or not histologic grade is an independent prognostic factor in small, node-negative IDC is still an unresolved question [10]. The Breast Task Force of the AJCC has noted that the data on this issue are sparse and inconsistent, and as such, it refrained from directly including the histologic tumor grade into the TNM staging. While the existing data clearly differentiate the prognosis of G1 and G3 tumors, the behavior of G2 tumors is ambiguous owing to methodologic differences (followup times, grading systems, and measured outcomes). We undertook a retrospective study to analyze the clinical outcomes in patients with small, node-negative cancers in an attempt to contribute to this ongoing debate regarding the prognostic significance of histologic tumor grade.
2. Design:
The files of the Department of Pathology, University of Kentucky Medical Center were searched from January 1995 through July 2007 and yielded a total of 111 lumpectomy/mastectomy specimens from patients with T1N0 or T2N0 tumor status. The cases included 10 T1a, 23 T1b, 45 T1c, and 33 T2 tumors. The age of patients ranged from 31 to 83 years (mean, 55 years). The length of followup ranged from 7 to 152 months (mean, 56 months), with at least 60 months (5 years) and longer followup in 56% of patients. Presence of coexistent ductal carcinoma in-situ (DCIS), lymphovascular invasion (LVI), estrogen and progesterone receptor (ER/PR), and HER-2/neu status by immunohistochemistry was analyzed. Clinical followup data with outcome through year 2008 were obtained from Tumor Registry. The tumor size and histologic grade in conjunction with clinical outcome was analyzed.
3. Results:
The data for tumor size, histologic grade, and patient status are summarized in Table 1. On the followup of patients with T1 tumors, 71/78 (93%) were alive and 3 deceased without disease. Only one patient died with disease (G1/stage T1b), and another patient was alive with disease recurrence (G2/stage T1a). Two patients were alive with status unknown. Of the patients with T2 tumors, 27/33 (82%) were alive and two deceased without disease on followup. Three died with disease (all ER negative, including one triple negative), and one was alive with disease; all four (12%) had G3 tumors (including two with LVI). All patients with hormone receptor positive tumor status received Tamoxifen or aromatase inhibitors. Of patients with T1 tumors, 24% received chemotherapy, as did 67% of patients with T2 tumors (2 of 4 with recurrent/ progressive disease had chemotherapy).
Table 1 Tumor stage, grade, and clinical outcome. Of T1 tumors, 76% (59/78) showed DCIS versus 69% (22/32) in T2 tumors. LVI was identified in 3% (1/33) of T1a/T1b, 13% (6/45) of T1c, and 24% (8/33) of T2 tumors. Positive ER and PR status was reported in 71% (55/78) and 64% (50/78) of T1 tumors, respectively, and 63% (20/32) and 69% (22/32) of T2 tumors, respectively. All three deceased patients with T2 tumors were tested ER negative. Two of those three tumors also showed LVI. The patient with the T1b tumor who died of disease had ER-positive tumor and no LVI. HER-2/neu status was unknown in this case. Positive HER-2/neu status was reported in 1/61 T1 tumors and 5/26 T2 tumors. Of three deceased cases, HER-2/neu status was reported in only one and was negative. Both patients who are alive with disease had positive ER and negative HER-2/neu tumors, and no LVI.The relationship between the tumor grade and clinical outcome moderated by tumor size has been determined by using the Fisher exact tests (Table 2).
Table 2 Clinical outcome by tumor grade in small (T1, T2) node-negative breast adenocarcinomas. The results of the Fisher exact tests suggest an interaction effect-with the relationship between tumor grade and clinical outcome moderated by tumor size. That is, among patients with T1 tumors (n = 76), clinical outcome did not vary significantly by tumor grade (P = .46). However, among the T2 group (n = 33), the number of patients with G3 tumors who were with disease (n = 4) was significantly greater than those with G1-G2 tumors (n = 0)(P = .04). The strength of the relationships (
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) between tumor grade and clinical outcome for the T1 and T2 groups was.11 and.38, respectively.4. Discussion:
Regardless of histologic grade, the overall prognosis for small node-negative breast adenocarcinomas appears to be very good. In the current study, the disease-free survival for patients with T1N0 tumor status was 93% (71/76) and for patients with T2N0 was 88% (29/33). This relatively good prognosis is similar to that reported in prior studies [5, 11, 12], and the difficulty of addressing the prognostic significance of histologic grade in these breast cancers is highlighted. Namely, studies would need to be larger to have the statistical power to detect a relationship between histologic grade and clinical outcomes. Beyond sample size, length of followup is also an important consideration as recurrence may occur quite late [13-15]. While some studies have shown histologic grade to be prognostically significant in small, node-negative breast carcinomas [5, 16, 17], other studies [18-20] do not demonstrate this association. Lundin et al. suggest that omission of histologic grading from clinical decision making may result in considerable overuse of adjuvant therapies [21]. Based on our data in this relatively small study, there is no evidence that higher tumor grade impacts the clinical outcome in T1N0 tumors. This tumor status was not associated with higher rate of recurrence or disease persistence in our study. In T2 tumors, however, our data suggest that histologic tumor grade might be prognostically significant and relevant in influencing decisions regarding the need for additional adjuvant therapy and optimal management of node-negative breast carcinomas at this stage. Currently, adjuvant hormonal and/or cytotoxic chemotherapies are recommended for most women with early-stage invasive breast cancer. Treatment decisions are based on axillary node status, age, tumor size, histologic tumor type, tumor grade, hormone receptor status, and coexisting medical conditions [22]. However, most patients with node-negative disease who receive chemotherapy will not derive benefit because they would not go on to have a recurrence even without such treatment, which also questions the necessity of performing the Oncotype Dx testing in T1N0 tumors. New prognostic and predictive tests are needed to better individualize therapy and confine systemic treatment, especially cytotoxic chemotherapy, to those patients who are most likely to benefit [23, 24]. Although based on a limited material, our data may suggest more favorable prognosis for patients with T1N0 regardless of tumor grade, as well as low-grade T2N0 tumors, compared to those with high-grade T2N0 disease who might benefit from additional chemotherapy. Larger studies with considerable statistical power will be needed to definitively demonstrate the impact of histologic grade in these subsets of breast adenocarcinoma. Several relatively recent studies indicate that the histologic tumor grade appears to reflect specific molecular predictive indicators such as proliferative markers and multigene expression arrays [25, 26]. Interestingly, the grading was shown to correlate with other proposed prognostic factors such as Recurrence Score (Oncotype Dx) and casting-type microcalcifications [23, 24, 27]. In the Kaiser population, tumor size and tumor grade remained statistically significant associated with the risk of breast cancer death in most multivariate models that also included the Recurrence Score [23], whereas only tumor grade remained independently associated with risk in the NCABP B-14 study [28]. The Recurrence Score was able to identify a larger subset of patients with low risk of breast cancer death than was possible with either of the standard prognostic indicators [23]. While currently the Breast Cancer Task Force has elected not to include histologic grade as a stage-modifying factor in the TNM system [8], it still does recommend collection of tumor grade, using the standardized Nottingham combined histologic score with calibrated mitotic counts, for inclusion in tumor registry database [1]. How to merge histopathologic data with clinical, radiographic, and molecular information into a therapeutic plan is an evolving challenge. While many studies indicate the significance of Recurrence Score in predicting the magnitude of chemotherapy benefit, given the financial constraints and limited access to molecular testing within many health care systems, studying the utility of histologic grade (along with other parameters) continues to be relevant. For example, based on the literature as well as our data, it might appear that the Oncotype Dx testing (quoted price $4,075 per test) is adding little or no additional prognostic value to T1N0 and low-grade T2N0 tumors, which almost always show favorable outcome with no recurrence. Ultimately, determining if histologic grade will independently provide clinically relevant information in these cases to serve as a decision tool in the adjuvant chemotherapy setting merits further investigation with a large data set, extended followup, and standardized reporting.
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The Path to Personalized Medicine
New England Journal of Medicine
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AA....We are at a watershed moment in medicine. And I truly believe that the move to more personalized medicine with targeted therapy is going to explode in the next decade.
Eve knows that I have invested a great deal of my time to discovering EVERYTHING there is to know about genetics and how it is influencing medical care. My husband was diagnosed many years ago with a potentially catastrophic genetic metabolic muscular dystrophy. The doctors that are responsible for keeping him vertical are extraordinary. There IS no medicine on the market to treat his disorder. Instead, these doctors have come up with a "Lorenzo's Oil" that has been keeping him vertical for a number of years. The devotion that these doctors have to genetic illness and how to find alternative treatments is mind boggling. But what they are doing is setting the stage for how ALL disease will be treated in the future. I marvel at how disease is now being perceived and treated. I think that with cancer treatment we are beginning to see positive changes in how best to treat and NOT treat patients with chemotherapy. I really think in a few years, there will be many more targeted therapies that will spare women chemotherapy AND more ways of determining who has a favorable prognosis that can spare patients of chemotherapy all together.
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