Why Im Not Doing Chemo
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Eve, i wouldnt want you to make a decision re hormonals based on any complaints we make about 'feeling old'. Your situation may be very different, in that i was premenopausal, 46, and went into an instant menopause state, which was hard on the system. I have some side effects from tamoxifen for sure, but remember it was initially made as a contraceptive (according to my onc) so the 'risks' are similar to a contraceptive re strokes. Having stage IV BC, my risk of dying from something 'unrelated' goes up by 10% anyway, despite (or because of) living with cancer. If you are considered cancer free, then you will not have the added treatment risk factors that I do. Re herceptin, thats for the others to discuss with you, as i have no experience with it. Re chemo?, well you know my position on it. Lastly: re 'micromets' and the body's ability to kill them off?...well, we hope thats the case in theory, but I have read that micromets can possibly be cancer stem cells, and maybe its that when they reseed, we have progression. Digger is right....there is so little concrete understanding of this disease, we exhaust ourselves trying to navigate it ourselves.
Anyway, im very happy for your clear brain scan
))))Maybe research the biology of micromets? ( i will try to for you if i can) but i do hesitate to be convinced that rougue cells from a tumour, as opposed to random cancer cells, can be easily killed off by our immune system. If someone has information on this, i would appreciate it.
I sympathise with you, its a tough decision
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I know you have your own risk factors though, re your age and your chronic condition, but i wanted to clarify that i have the complaints of someone who is stage IV on tamoxifen, as well as someone who went into an instant menopause like state, and my body shows the change in a few ways, that's all.
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that's life you are on the other side of the world and you are in day light and I' need to go to bed. I've a full two days of work coming up so I need to be rested.
But, I did want to say, yes, we haven't talked about the stem cells. Chemo may kill the cancer cells, but they haven't yet figured how to kill the stem cells. It's the stem cells that makes the cancer take root and go elsewhere. That's the million dollar question? It like taking off the flower, but leaving the root (root cause).
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Maybe someone can enlighten us regarding your question, thats-life. I did look up apoptosis, which is basically what we want for cancer cells, and found this in Wikipedia (under apoptosis).
A cell initiates intracellular apoptotic signaling in response to a stress, which may bring about cell suicide. The binding of nuclear receptors by glucocorticoids,[14] heat,[14] radiation,[14] nutrient deprivation,[14] viral infection,[14]hypoxia[14] and increased intracellular calcium concentration,[15] for example, by damage to the membrane, can all trigger the release of intracellular apoptotic signals by a damaged cell. A number of cellular components, such as poly ADP ribose polymerase, may also help regulate apoptosis.[16]
It's not just about the immune system, at least the way I understand it. These other mechanisms may or may not kill cancer stem cells or tumour rogue cells. Here's an update on how metformin might reduce the risk of cancer recurrence by reducing the cellular mutation rate and accumulation of DNA damage.
http://www.sciencedaily.com/releases/2012/01/120118132334.htm
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I tried to ask the MO I saw the other day about Metformin and he just blew me off. He didn't want to hear anything I had to say...dismissed me with "I wouldn't prescribe that for you...you don't have diabetes". He totally destroyed his credibility in my eyes. I'll be getting another MO!
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Eve, with invasive cancer, tumor size does matter.
With DCIS, the cancer cells are stuck in the milk ducts. Milk ducts are confined to the breast. Therefore no matter how much DCIS someone has - 1mm or 10cm - it will always be Stage 0, it will always be pre-invasive and it will always present virtually no chance of mets. That is the nature of DCIS. The risk with DCIS is that the cancer cells will continue to develop and at some point some of those cells will gain the ability to break through the wall of the milk duct. As soon as one cell breaks through the wall of the duct, it is no longer a DCIS cell; now it is an IDC cell. And that's a whole different ballgame.
IDC cancer cells are in the open breast tissue and have the ability to move anywhere. Where they tend to move to are into the nodal system and into the vascular system. Those two systems run through our whole bodies and therefore once an IDC cancer cells enters one of those systems, it has the opportunity to travel anywhere else in our body.
The size of an IDC tumor is important for one very simple reason. The more cancer cells that you have that have the ability to invade into the body, the greater the likelihood that one of those cancer cells will make that move. It's absolutely true that a very small IDC tumor can be very aggressive. If you have only 1000 cancer cells (approx. 1mm) but these cells are very aggressive, it's certainly possible that one or more of those cells might make a move. I had a microinvasion - just a 1mm tumor - and my oncologist explained that I had a 1% risk of mets, just from that tiny invasion. But think about it..... if someone has a small cancer that is very aggressive and presents a significant risk of mets, imagine the risk from that very same cancer if there are 200% more of those very aggressive cells. That's your situation, if in fact the tumor really was 3.8cm in size.
You have what is considered by all medical experts to be a very aggressive cancer. This means that at a size of 1.8cm, it is dangerous cancer - according to the Lifemath data, it presents a 28% risk of mets. If this very same cancer is larger, with more than double the number of cancer cells, then it is even more dangerous - according to Lifemath, at 3.8cm, this cancer presents a 49% risk of mets (and this is for those like you who are node-negative). Of course it's true that someone could have a 3.8 cm cancer that low grade and non-aggressive and therefore is not as dangerous as someone else's cancer that is 1.8cm - but that is not your situation. We are not comparing the risk associated with an small aggressive cancer to that of a larger non-aggressive cancer. We are comparing the risk of a small aggressive cancer to the risk of a larger aggressive cancer. In that situation, size does count.
A bit more on the issue of size/number of cancer cells. If you looking at staging criteria, it is interesting to note that micromets in the nodes is defined as ">0.2 mm and/or >200 cells ". Micromets are Stage IB (if the main tumor in the breast is 2cm in size or smaller). But anything larger than that - a tumor in the nodes that is 0.21mm in size and/or has 210 cells - that's considered full nodal invasion and that moves staging to Stage IIA. Staging is developed based on years of data about prognosis. This highlights to me the importance of the size of a tumor and the number of cancer cells. Similarly, consider the tumor size classifications in staging. A 2cm or less tumor is considered Stage I (if there is no more than micromets to the nodes) but a tumor that anything larger is moved up to Stage II. This classification too is based on years of data studing prognosis. The simple fact is that with all other things being equal, if there are more cancer cells, there is a greater risk that a cancer cell might move into the body and eventually develop into mets.
As for whether your biopsy sample and tumor sample were one and the same or two tumors, everything that you've posted suggests that it is one tumor. From a single area of cancer, the radiologist removed 2cm of cancer, leaving 5mm in the breast. The fact that the 5mm remaining turned out to be 1.8cm does not suggest that it was a different tumor. What it suggests is that either there was a lot more cancer there to begin with but it simply wasn't visible, or the cancer is so aggressive that it grew from 5mm to 1.8cm in the time between your biopsy and surgery (which would still make it the same tumor, not a different tumor). Unfortunately, neither of those options are good because both suggest that you have a tricky, stealth, aggressive cancer.
Sorry for presenting such a pessimistic picture. But like your oncologist, I don't want to find in 3 to 4 years that you have mets. I do find it perplexing that your oncologist would say that you are cancer free, but then talks about mets. Now that you've had the mastectomy and there are no cancer cells left in your breast area, the only way that you can develop mets is if some cancer cells escaped into your body before your mastectomy but simply aren't visible (yet) in the scans. That's what your oncologist is worried about, despite saying that you are cancer free. So she is contradicting herself. And that's what the 49% risk of mets in the Lifemath model represents - 49% of those with your diagnosis who appear to be cancer free after surgery in fact turn out not to be.
Again, sorry for being so negative but I'm drawing my conclusions about your diagnosis only from things that you yourself have said. I think it's good for any BC patient to try to see things from a positive perspective. But if you base your treatment decisions on some of what you've said, such as "when I hear I'm cancer free, I feel that I am" and "I don't think the size of the tumor for me ultimately matters.", you are ignoring the very basics of breast cancer. To me, that's not presenting a positive attitude; it's being naive. I hope in saying this I haven't offended you, but after looking at the Lifemath data and seeing what your risk really may be, I feel that I can't use subtle language. I want you to have every chance to live to a ripe old age.
Edit Notes: I was rushed when I wrote this earlier today so I've just made some edits to correct typos and grammar and add clarification to a couple of sentences. No other changes made.
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Hi Beesie, just a quick note to say thanks so much for expressing exactly what I feel. You have a real gift with words and your well-balanced concern and evidence-based approach is perfect.
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It is an excellent and informative post. (If a bit terrifying -gotta get my head in a good space!) But very useful.
As much as I am a fan of CAM treatments, I don't know, evebarry....seems like you are taking a big risk....
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Eve... Glad to hear that you found the PDR. While growing up, we had it in our home and I always loved reading it! Mom was a nurse and used to get a old copy from one of her doctors when the next edition was released. I marvel at the sight of young doctors using their smart phones to access it nowadays. It is their bible!
Beesie just posted a few thoughts that I was going to mention in reply to your latest post about being cancer free and size not mattering. I wholeheartedly agree with EVERYTHING that Beesie writes in her latest post. No doubt she concurrs with what I previously wrote as well, since she attempts to further elaborate on what I said.
Now,I will go further. First off, throw away the PDR! The DH always drives me crazy after he reads it! He will say to me, "Honey, did you know that Warifen is made from rat poison? Now why would you want me taking THAT?". And I would reply,"Maybe because it keeps you alive?"
My point Eve is that no drugs or treatment protocol are offered to you in a vacuum. Because the DH has numerous medical issues IN ADDITION to his underlying genetic metabolic muscular dystrophy, every medication and/ or procedure that he needs is carefully examined before the recommendation is made. Back in September, after 10 years of visiting numerous cardiologists and trying as many drugs to inhibit arrythmias, he finally had a cardiac ablation. Before the procedure, we were invited to a conference to discuss his care. There were 17 people at the conference, not including us and an 18th person on a conference call. The reason why I am mentioning this, is because NO DOCTOR IS GOING TO SUGGEST A TREATMENT PLAN UNLESS IT IS NECESSARY AND DOABLE. For years, doctors would send the DH away because they were fearful he was a poor candidate. It wasn't until he stabilized on his "Lorenzo'sOil" and the procedure itself improved over time, that the doctors were confident that he would do well with the procedure. Fast forward to today, he is doing wonderfully!
Now getting back to you. There are no guarantees that if you agree to the standard of care that in a few years you will not suffer from metastatic breast cancer. But unlike those sisters who are frail and would not even be given the opportunity to put "poison" as you and the PDR call it, in their veins, remind yourself that YOUR DOCTORS WOULD NOT BE RECOMMENDING IT UNLESS THEY DIDN'T THINK YOUR BODY COULD TOLERATE IT!
Doctors do not like to see patient suffering. You say you like this doctor. But clearly, despite liking her, you trust NOTHING that comes out of her mouth... Except for the words that you are cancer free.
I hope you will meet with more doctors who can do a better job of enlightening you about your risks and benefits of the standard of care. If the doctors believe you would do well with it, then you should consider that you are way more healthier than you perceive yourself to be. Doctors do not want to see their patients sufferering. Remember, their oath and pledge is to first, "Do no harm."
Toss the PDR. Forget the word "poison." Recall your other occurrences and the advice you were given and WHAT CHOICES YOU MADE and how things turned out. Recall that you now regret that you didn't have the mastectomy after your last bout.
Dear, sweet Eve, I simply don't understand why you lack confidence in accepting their advice. I have found in my journey through life, that sometimes accepting others advice is very empowering. I can't know or foresee everything. Sometimes we show strength in being humble and unknowing and letting others make decisions for us. Let go, Eve! It might ultimately make you stronger! Won't you please, THIS TIME,accept their wise counsel.I also want to mention one more thing that has not been mentioned or addressed. Having recurrences in a short period of time is NOT a good thing. At. All. Right now either you are being very brave or very naive. Not sure which......
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I too think Beesie's post is a really good explanation of the issue of risk for an aggressive type of cancer.
I appreciate that she did not try to address the value of any treatment in detail as a way to counter that risk. The value of the addition of standard chemotherapy for HER2+++ breast cancer remains unclear after over a decade of use with trastuzumab for HER2+++ breast cancer patients.
We do know that the use of chemotherapy alone for HER2+++ patients has had especially dismal results. Yet most of those responding here would favor adding chemotherapy to the trastuzumab evebarry has already indicated she is willing to do if necessary. What proof is there that it helps to add it?
We know that the use of trastuzumab with chemotherapy is better than chemotherapy alone. We don't know that the use of chemotherapy with trastuzumab is better than the use of trastuzumab alone.
We know that the use of chemotherapy requires the use of other support drugs, and we don't know what the effects are of those support drugs in this picture. Such support drugs as steroids could either increase the positive effect of the trastuzumab or decrease it. The chemotherapy may in fact act to lessen the positive effect of the trastuzumab and the support drugs could be countering that negative effect by the chemotherapy. We do not know.
Doctors know what the safe dosage is for medications like chemotherapy in terms of not overdosing patients. However, it is theoretically possible that there are some patients for whom any drug that is not targeted therapy (known for certain to have a definite and certain helpful effect on the disease) actually may increase cancer. Chemotherapy is carcinogenic. It is possible that this could be a reason for the poor results some patients have in doing standard treatment, and that some patients might not have such poor results had they not done carcinogenic treatment. This is one reason why it is not as simple as it seems to use it as a protective solution. Those who feel that it does no harm and is only uncomfortable, so why not add it as an extra precaution are not taking into account its carcinogenic properties. We know it does result in a very limited percentage of later cancers. The question of whether it can cause carcinogenic effects with an existing cancer is one that is never asked.
A.A.
P.S. It is also likely that chemotherapy does not kill stem cells.
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AA Did you not have chemotherapy and are you now well? CASE CLOSED.
Where is your evidence? Did you read the announcement yesterday about chemotherapy and HER2 postitive tumors? Please take the time to read WHAT is being done as opposed to what isn't. You are insulting to researchers and clinicians.
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And regarding evidence based clinical trials for half the things you mention, it is NOT worth debating because of ethical considerations, which we've already discussed AND because it would be difficult to accrue enough people into the trials even if they were approved.
Leave the "theoretical possibilities" to the researchers! Oh....I forgot...they're all idiots....
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My focus here is to encourage critical thinking about risk and about treatment. That is not something everyone is inclined to do, and I understand that.
A.A.
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AA, you say "We do know that the use of chemotherapy alone for HER2+++ patients has had especially dismal results."
The Lifemath results that I quoted do not include Herceptin; they represent chemo and an AI only. For someone with a tumor like Eve's that is 3.8cm in size, having chemo and taking an AI reduces the 15 year death rate from breast cancer from 49% to 20%. That seems to be a far from dismal result.
Lifemath gets it's data from studies and data bases that incorporate the results from hundreds of thousands of women. Where do you get your information that chemo doesn't work on HER2+++ patients?
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Thank you Beesie. What has been said many times about HER2+++ patients was that even with chemotherapy the disease was a "death sentence". I appreciate the critical response. What is the value for those who do not take trastuzumab or chemotherapy but who opt for ovarian ablation, with or without any additional hormonal therapy? What is the value for those who opt for ovarian ablation plus trastuzumab but no chemotherapy?
A.A.
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AA - ovarian ablation would have no value for someone who is post menopausal - like Eve and me and many many others. So the answer is none.0
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susieq58
I can understand why that is a general assumption. However, determining postmenopausal status as I understand it is less certain and complete by cessation of menstruation, etc. than it is by surgical means.
A.A.
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???????? I was five years in menopause - no doubt about it. I don't need surgery to confirm it.
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My question is also intended to allow consideration for those who will not choose chemotherapy, and who might choose trastuzumab +/- hormonal therapies. Should they be offered the alternative of surgical ovarian ablation in order to better meet their preferences? Is that information made available as an alternative option?
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AA...There is a huge difference between critical thinking and being critical. You are throwing out words that are meaningless and confusing for anyone who is NOT as astute and familiar with how research is conducted nor familiar with statistics.
You use the words "tiny" and 'dismal" without any evidence.
Before you can have an informed discussion about ALTERNATIVES, first get your evidence straight and use terminology which is NOT subjective.
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Seriously, for those of us with HER+ tumors, saying any treatment has had dismal results makes us panic in a big way. Chemo is effective on Her+ tumors, but it is more effective when combined with Herceptin (and now, Tykerb, according to studies.)
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Sweetbean...Please don't fret. The news yesterday regarding HER2+ tumors was probably the most wonderful news since the discovery of herceptin.
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I know, I just wish my onc hadn't totally screwed up. I feel like I'm getting Her2+ treatment circa 2007. *sigh* I'm definitely going to do a clinical trial for a vaccine when I am finished with Herceptin in May.
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Sweetbean for AA to say that her2+ bc is a death sentence is insensitive and it is also untrue. look again at beesies figures and then add herceptin and remember that this is 2012 and not 1982.
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I'm thankful to get the information and appreciate the correction. I agree, it is important to provide patients like evebarry all possible options and information with accuracy.
Is ovarian ablation offered as one very real option to patients as a rule, in the event that they have expressed their preference not to do standard chemotherapy?
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AA, your questions are good ones. There are many things that we don't know about treatment that we need to know. We should know more about all the options and how they compare. What about Herceptin without chemo? What about ovarian ablation? More research needs to be done to get those answers.
All good questions.... in a theoretical discussion. But this is a discussion about a very real situation, with very real life and death implications. Yes, we should know more. But right now, we don't. The treatment decisions that Eve needs to make must be made using the information that we have available today; anything else is pure speculation, possibly wishful thinking, and possibly life-threatening.
I enjoy theoretical discussions. I think it can be interesting to sometimes take theoretical discussions to the extreme. I like exploring wherever those discussions lead. The questions and "what ifs" and "maybes" and critical thinking that takes place in theoretical discussions can be fascinating, and it can lead to new learning and progress. No lives are at stake in theoretical discussions. This is not a theoretical discussion.
AA, for me, that sums up my frustration with your posts. I like where you are taking the debate, but I don't feel that this is the place for that debate. Those of us who are arguing with you are concerned for Eve; we don't want to see Eve come back here in 3 to 4 years, or even less time, telling us that she has mets. We want to do what we can to reduce the chance that this will happen. We are looking at the practical reality of the situation; you are talking about theories and raising "what if" questions.
About HER2+ cancers, the reason that they are considered a "death sentence" even with chemo is not because chemo is ineffective but because the mortality rate of HER2+ cancers is much higher than the mortality rate for an identical cancer that is HER2-, with or without chemo. Without any treatment other than surgery, Lifemath puts the mortality rate for Eve's HER2+ cancer as being 40% higher than an identical cancer that is HER2-. With chemo, although the percent who die is reduced significantly whether the cancer is HER2+ or HER2-, the mortality rate of those who have an HER2+ cancer remains more than 40% higher. That's why Herceptin is so important to those who have HER2+ cancers. Adding Herceptin to the treatment plan reduces the mortality rate of those with HER2+ cancers to about the same or even lower than what it is for those with HER2- cancers.
As for menopause, you are correct that the cessation of menstruation is not a sure sign of menopause. In fact normally it's assumed that one has not entered menopause until 1 year after your last period. But in any case, there are tests that can be done to determine if you are in menopause or not. So menopausal status can be determined quite simply, although it's not menstruation that is the indicator.
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Beesie,
I understand your concern about wanting to keep this discussion focused on evebarry's situation. I think your posts are very helpful in clearing up the confusing impressions people have, including me, about treatment. I think it is valuable for evebarry to get a stronger sense of risk vs benefit.
I do not value the active cooperation by patients in the continued application of lack of investigation into better alternatives by assigning them to some other time and place. Medical practice responds to consumer demand. It is one reason why it is so difficult to get drugs like trastuzumab approved at all. I don't think it is harmful to more clearly define any of this as a part of evebarry's thread, for her to consider.
A.A.
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AA.... "I do not value the active cooperation by patients in the continued application of lack of investigation into better alternatives by assigning them to some other time and place. Medical practice responds to consumer demand."
Consumer demand is NOT the reason for lack of alternatives and new research. In fact, the impetus for discovery comes from the desire to save lives. And again, assuming that people accept the status quo is the reason why discoveries do NOT occur overnight, again is INSULTING to every cancer patient, clinician and researcher.
Please consider starting a new thread, as Beesie suggested. Your theoretical discussions might be more welcome elsewhere......
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one thing evebarry said once.. not too long ago, and I'm having trouble finding the post, and it was not too long ago, is that she believed in alternative treatments and would spend her time her at BCO promoting, doing what she could to share her views on alternative treatment.
That is one thing and one's health is another. You've been offered some wonderful help here Eve and hope you come to believe that treatment for you might entail more than cutting the bad spot out of the apple. I wish you the best of luck.
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It is interesting that the method that has been known for many, many years to be helpful in reducing breast cancer has not yet completed trials to determine the extent of its value.
Is ovarian ablation offered as one very real option to patients as a rule, in the event that they have expressed their preference not to do standard chemotherapy?
It does appear that most of those posting here strongly prefer chemotherapy and all that comes with it, but not all of us do, and why shouldn't those of us who don't, be given the information from research to help us make our decisions?
If the impetus for discovery comes from the desire to save lives, maybe a truly compassionate response would be to provide information instead of coercion by those who prefer treatment that has an uncertain outcome for each individual.
A.A.
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