Survivors who have used only alternative treatments
Comments
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It can also travel to nodes other than the axillary nodes. They aren't as easy to deal with so they aren't routinely checked without symptoms.
Here are some other words to watch for in your pathology report.
focal extranodal extension
micropapillary component
E/C status
perieural invasion
small and large vessel invasion
I am sure there are others, depending on the country and/or lab. Each term has their own statistical significance. So, I think it is wrong to assume that the onc's recommendations are based only on the size, staging and grade of your tumour.
I am not saying that we should not do our own investigating and ask questions about our doctor's tx plans. However, I do worry if one thinks that a web site, anecdotal story or gut feeling is enough to determine the appropriate course of tx for themselves that they do not have ALL the pertinent information. On the other hand, I also worry about those that accept a course of tx without checking out the facts available and asking some questions.
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Member, you said "Breast cancer doesn't metastatize through the lymph nodes to distant sites, it goes through the blood for that."
Where did you get that idea?
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Member, I've never heard that either, but doesn't mean it's not correct. I never really looked at that since technically cancer in the lymphs is spreading to another area....if it stays there without treatment it eventually grows and busts out into surrounding tissue right?
My problem with using lymphs to stage is the fact at my facility it is used as the ONLY thing to determine treatment/scans. So many of the women I'm in treatment with now were diagnosed stage 1 or 2 a few years ago with no node involvement, treated, "cured," given no further scans, and are now back with Mets.
Second, in my mind once it's in the lymph system, it's there. I don't need to have an increased risk of LE to find out exactly how many lymphs it is in, anything above 4 (for staging is overkill imo since I'm getting chemo/rads anyway). The two SN closest to my tumor had the least amt of cancer cells, and the two further away had the most....according to lots of studies I've read that's not how it usually works......but it's in my lymph system, that's all I need to know.
Also, there are other ways to find out about axilla lymphs without ripping them out. A woman I'm in treatment with had 4 SN removed (all positive), and several axilla's biopsied with a fine needle. The axilla lymphs are still in place and doing their job. (Since she had 4 positive SN her treatment wouldn't change if any cancer was in the axilla either.)
I hope axilla dissection is on its way out. There are too many other less invasive ways to determine axilla involvement now...
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I can't remember where I read it initially. Here's an ACS reference to it:
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-what-is-breast-cancer
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Hm . . . why can't I hyper link?
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maybe, to hyperlink within forum you have to use the little chain next to the clipboard with a T.
sometimes you can link by simply hitting return after copying the link and it turns purple but in the forum you have to use the chain i think. let me see if that works.
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-what-is-breast-cancer
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http://www.molecular-cancer.com/content/7/1/23
This is one of the first few google hits that inform us breast cancer spreads primarily through the lymphatic system.
Please WOM, reconsider treatment from an oncologist.0 -
Yeah I get a lot of hits about it spreading through the lymphs as ONE of two ways it spreads...
"Metastasis means the spread of cancer. Cancer cells can break away from a primary tumor and enter the bloodstream or lymphatic system (the system that produces, stores, and carries the cells that fight infections). That is how cancer cells spread to other parts of the body."
http://www.cancer.gov/cancertopics/factsheet/Sites-Types/metastatic
So yeah, the train and bus scenario...
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Yes - and excellent analogy, BTW. I'm sure there's air transportation too but it hasn't been discovered. Until then, the blind leading the blind.
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When I had my first breast cancer 28 years I was told I would get a blood test on an annual basis. The surgeon explained that everyone has embryonic cancer cells in their blood and the danger signal is if they increase suddenly. No way of knowing where the cancer is, but it is somewhere and tests need to be done. I never had an increase of the cells and discontinued the blood test (it was very expensive) after 10 years. But I did continue having annual mammograms although both breast lumps were missed by the mammograms!!
I then got a new cancer in the other breast in November. Since I'm now 75 I've decided to skip radiation (the onc said it was up to me) but will be taking Aromasin.
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Her2+ BC is especially prone to spreading w/o hitting the lymph nodes first. 25% of node negative, < 1 cm Her2+ BC recurrs if not treated beyond surgery (and rads if lumpectomy), Most of the time as metastatic. That's why many of us early stage, Her2+ are so terrified.
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i may not agree with a lot of the backbiting/ bed spirited posts here, but i will agree that (A) it Does take a lot of dedication to do alternatives. i did conventional, cause i was her=2nue, and my case was REALLY agressive! then, i've had to do alternatives, my body not agreeing to any of the AL therapy. BUT, i have had real problems.. my ins covers NONE of the supp;lements, NOR the DRS. who do the alternatives. the tests they do before they'll even see you is over $1,000.00 before the dr. will even discuss whether he'll take your case, or not.
that has left me depending on a g.f. in France, who has shared w/ me the European mode of tx. alternative. not FDA approved, and not likely to be, for a long time.
i don't have the dedication that she'd talking about, not eating red meat, or non dairy.. i do very limited amts. of both, but am working my way there. so,. i do understand the point. even though i faced thechemo, DMx; and all the other, i just got to eat again, after 2 yrs of hardly noteating. and i want to enjoy what i have!!(some of you will say, even if it kills me) and that might be right. im hedging a lot of my bets, and just doimng baby steps.. certainly NOT the dedication she was talking about. so, i understand the point made.
i still defend every woman (wether a sister, daughter, mother ) has the ABSOLUTE right to decide for herself. she's the one to face the consequences, so why not?
@!!!
sorry, but it burns me 3jays
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"I'm sure there's air transportation too but it hasn't been discovered. Until then, the blind leading the blind."
Lol, I agree. And this blind frankenboobed woman wants to keep as much of a normal life as possible!
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wornoutmom,
I am staged IIb with a 4 cm tumor when in fact I didn't have a 4 cm tumor. I had a 4 cm area with multiple tumors of which the biggest was 4 mm. But they consider the whole area as a big tumor in terms of staging.
So maybe that's your case too. You said "my largest size is 2 cm" so that would imply that you had more than one tumor, but they might do like they did with me, and take into consideration the size of all the area involved?
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I did have more than one tumor but they don't count the other one in my staging as it was in-situ (5cm) that is what they told me anyways. The invasive one is the one they staged me with. I just figured it was yet another mistake by my lovely group. This is the final path so why would they not be specific on the measurement?
All this talk about Herceptin has anyone taken just herceptin without the chemo? I have heard some have but my doctor says it is all or nothing. How many out there have looked into the studies on Petuzumab? Having decent stats but again they don't clarify against what. Wonder if it will have the same heart probs as herceptin as my BC pill messed with my heart and that worries me. I keep hearing stats on herceptin but wonder how many people really understand it. Makes me think it is time to do some more digging. I mentioned her2neu and many don't know neu but it is the very name of the protien that we are scared about. Wonder how long until rather than speaking about her2neu instead it will be replaced with the concern of C35? Also wonder how many have even heard of it. Hope it will lead to more progress
! I can't help but wonder if some of the node issues (involvement/non involvement) may have other causes. There is no dispute that rad causes cancer and my radiologist confirmed in the 90's it lead to lung cancer so that might be ONE thing to look into. Chemo is linked too. It does travel through your blood killing good and bad. We have CT in the blood and weakened defense that can't be good. I only wish they would start looking at all the 11 factors of cancer growth. When we talk about hitting it from all sides that makes sense but our typical treatment only covers 4 of these factors. We need to look beyond apoptosis. Don't get me started on the P53..lol Think I got labeled a trouble maker when I questioned my onc but oh well. I only get one shot at this and I am going to know every ounce of this subject I can to make my decision that is why I am a wornout mom...lol
3jaysmom I had to share. Not sure how your foods are but here but we have hormones and antiobiotics in meats. I used to snub my nose and just learning (last week...lol) that I shouldn't have laughed so much. I only really eat chicken and thougtht what is the big idea. Well if you are ER positive you might want to know that the hormones in the meat basically are either turned into or rise estrogen. So before it wasn't a big deal but now I finally had to suck it up and buy the outrageous priced organic chicken. A humbling moment after laughing at the prices for all these years
That and soy. Wouldn't do me any good to have a natural supplement to get rid of estrogen then fill it back up. 0 -
wornoutmom you are absolutely correct that both chemo and radiation can cause you to have another/different type of cancer. Again it's one of those risk/benefit balances. This is one of the reasons they just don't give chemo/radiation to everyone but only to those who have a higher risk of recurrence.
I don't have the studies on hand but I'm sure you have read that Herceptin does work better when given with chemo. Have you looked into a drug called T-DM1, an antibody made by Genentech/ Roch? There are trials going on now. It seems to work well with Herceptin but I do believe they give it with chemo too.
I would check about Herceptin only. I know there are some women on these boards that have fought for it. Very few though. You might want to post the question on new thread on the HER2 forum section.
You are correct that they only measure the IDC. My tumor had both components but the IDC was the only one that was measured. I think the reason why they can't be exact is tumors are not perfectly shaped… It's not that they are sloppy. If your group keeps making mistakes maybe you should consider getting a 2nd opinion. Just a thought.
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Wish that were true, Lago, that "they only give radiation/chemo to higher risk patients."
My tumour was 7mm and I got 20 days of radiation. Plus I was older and considered lower risk at age 64 but still got the radiation.
While I was in the waiting room I chatted with a patient who was DCIS and we discussed the fact that she had the option of radiation or not since it was insitu and tiny (I believe). Later, when we were in our respective rooms and the radiologist was talking to her (I could hear through the thin wall) she was being told "most women want to do the best for themselves." So she was being talked into radiation since she wouldn't be doing the best for herself by denying herself radiation. I never saw her again so i don't know whether she went for the radiation or not.
About the chemo bit. My sentinel node at the time of the surgery was negative but came back from the lab with a question mark, i.e. they didn't know if it was positive or not and they tested it twice.(They thought it had an isolated tumour cell). So the head of oncology recommended 4 rounds of chemo. Looking back, I believe I was overtreated esp. with the chemo part of the treatment. The oncologist was going with the latest findings from the San Antonio conference.
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lago, you can see my stats. My first Onc. felt I really should have chemo, but of course it was my decision. Well I started the chemo, and then spent 5 months just trying to recover. Needless to say I no longer go to her. If I had listened to my BS who is also an Onc. I would never have had the chemo. I have a new Onc. now who also has said he would never have recommended it.
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Hi Wornoutmom,
You had some questions about your staging. HERE's a helpful link for AJCC staging - maybe it can help clarify. Many of us have had mixed pathologies, especially DCIS along with invasive types. I had IDC with DCIS, but the invasive component "trumps" the non-invasive part, so the DCIS part isn't even usually mentioned in my diagnosis.
I'm sorry you've found reason to be here, and also sorry you don't feel supported in the way you had hoped. You seem to have done a lot of researching, and I wish you all the best. It seems you have some preconceived notions and theories (of course we all do, and it's not a bad thing necessarily), so I wonder if instead of really asking questions, you may be seeking validation? If that's the case, you'll find support here.
Perhaps if you do have specific questions, you could clarify them so we can offer specific information to help. You'll find lots of support for this too. At this point, at least to me, it's unclear exactly the type of support you're seeking. Don't go away frustrated - let us know how we can help you. As you see, there are a lot of differing opinions and no easy answers.
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Chemo is definitely supposed to only be offered to higher risk patients -- according to the recs out there. But obviously, every onc makes their own recommendations based on their perceptions/experience and the specifics of the patient.
Radiation -- at least with lumpectomy -- is offered to almost all with invasive cancer, I believe. That's because of the high risk of local recurrence for everyone. There's another interesting thread going on in the DCIS forum right now regarding a long-term follow-up of DCIS patients. It found that 20 percent who had lumpectomy without radiation had a recurrence (I'm assuming they're talking loco-regional recurrence, but still...!) The locoregional recurrence rates are even higher for invasive tumors after lumpectomy without rads.
To me what is hard is the idea that even 10 percent of people with no nodes (Stage 1) will go on to have metastasis. And they are typically not offered chemo after their initial diagnosis. Chemo is awful, and it would be hard to justify giving it to so many people to save a few (treat 100 to save a few, so 90-some were treated unnecessarily.) But still, to be one of those few who could have been saved and end up with Stage IV BC without having had the opp for chemo which might have lowered the risk, must be hard.
Radiation after mastectomy is reserved for higher risk patients (with nodes or LVI or such).
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Painterly what I meant by higher risk doesn't mean high stage alone. There are many factors other than stage alone that establishes high risk like being triple negative, HER2+, node invasion etc. They also give radiation for those opting for lumpectomies because the risk of local recurrence is higher than with MX.
You may have been over treated with chemo. This isn't an exact science but in general a good doctor doesn't want to over treat with chemo. Didn't your onc give you any statistics on the benefit of getting chemo?
Kira Treatment of IDC and ILC are not always the same since ILC tends to branch out rather making it a bit more difficult to really understand the extent of the invasion. This is maybe why your onc might have opted to treat more aggressively. Did you question him/her on this?
Beeb to add to your list Radiation after mastectomy is common for those with tumors 5cm and above (also higher risk). I was in a grey area and my rad onc thought my treatment was so aggressive already that she didn't see any need to add further stress to my body… benefit wasn't worth the risk give the treatment I was already getting.
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lago, No I didn't question her at the time. In my case my BS actually questioned the original report saying it was ILC because it was a very distinct lump, but his 2nd report came back the same. I think in my case she just did what was the usual without really looking at the whole picture. My Oncotype test coming back at a 24 really was the overriding decision for her.
What I never understood and she didn't question was the results from the Oncotypetest being so different from the 3 path reports I had had from the other places.
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Wornout - I tried to read through all the posts... I just couldn't do it - too much bickering and statistic quoting, etc. All I want to relay is what I know to be fact (for ME): I was 37 at diagnosis with a 3 month old baby. I wanted to do EVERYTHING in my power to live for my child - I did not care about the side effects, I wanted to LIVE. Period. (And I was healthy - ate right, exercised... all the things I should do.) I did the chemo... but I did my chemo neoadjuvantly (first - before my mastectomy). I can tell you for a FACT that chemotherapy saved my life. My tumor was very aggressive, grade 3 and triple negative. It went from being 39mm at diagnosis to less than 6mm at surgery and the pathologist said it looked like it was ready to completely die off. I also had a very, very large lymph node... it was the size of my thumb... it shrunk a littleduring Taxol, but a few days after my first AC treatment - it was no longer palpable. At all. And ALL of my nodes came back negative at the time of my surgery... despite that US and PET had shown 2 rather large ones. So for me - because my chemo was up front, there was no guess work. There was no wondering whether or not chemo was working for me, we KNEW it was. My husband read some dumb book that said chemo doesn't work... maybe the same one a couple other people have read... LOL.. We have this discussion all the time on how I think it is totally unfair that they threw that blanket statement in that book, when there are people like me that know without a shadow of a doubt that it worked. Look, you have to do what is right for you... and I know you were looking for people that did alternative therapies... but please don't let your fear of treatment be your deciding factor. It is all do-able. And yes, you are right - they may come back in 10 years time and say that such and such put you at risk for such and such. We see it happen all the time with things we don't think as much about - like our foods! I haven't even finished reading this thread, so you may have already made your choice... whatever you do/did decide, I only wish you the best and hope that whatever weapons you choose to fight this battle work in your favor. Hang in there.
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Like Nordy, I had the chance to see my primary tumor, my very palpable and painful lymph node mets and debilitating bone mets disappear completely from neoadjuvant chemo. It worked for me. I can't guarantee it will work for you. No one can.
wornoutmom, sometimes things are just beyond our control, especially when it comes to cancer. We don't know if it's 6 genes, 21, 70 or 200 that cause cancer. The most advanced test in Europe goes for 70.
I think you urgently need a second opinion since you have your misgivings about your team. That is covered by insurance and even if t isn't, it's worth the expense for a liitle more re-assurance. T he experience and skill of a doctor counts for a lot.0 -
WOM,
I've been reading this thread for a while, and so hesitant to say anything because anything on this board that isn't true blue alternative is taken as snarky and bitter. But I have to ask, WOM, why didn't you post this question on the Stage III board? If you post this question on the alt board, you're going to get exactly the responses that you wanted: chemo is really hard on your body and has many, many side effects. But as a number of people have also pointed out, the little bickering and controversy over stats and what not are among women with a lower stage than you are. It's like comparing apples and oranges. Your horse has already left the barn at Stage III. Not to minimize women in earlier stages, but it is no comparison to the treatment that your doctors, or any repuateble doctors at this point, should consider. So many of the women on this board who are telling you the bad effects of chemo and that they wouldn't have done it, are earlier stage. There's not one woman who is Stage III or above who said to go all alternative. And no, they haven't been scared off by others. They don't exist. I know you're going to do alternative better than anyone else ever has and I don't doubt your commitment and dedication, and that's great, but, again, the horse is out of the barn already.
I truly believe that you posted on this board, with your stats, because you knew which answers you wanted and what you wanted to hear. And that's not an attack on you, many of us would have done the same. Who wants Stage III at your age, at any age? Who doesn't want to question whether the pathology was right or whether something else is causing the cancer? But the fact of the matter is that the you're in a very serious situation that total alternative is not going to fix. Many other women in your shoes have also chosen the true blue alternative, and it doesn't work no matter the dedication or commitment. Have you read on here of any Stage III woman who is now cancer-free, or halted the progress of the cancer, going total alternative?
I understand this is totally your choice. It is, and it isn't. You have young children, and the decision for treatment is not all about you, it's about your children.
Again, you can find the answers you want by posting on the board where you you'll get appropriate ammunition to support your dedication to alternative. But how about asking and discussing your treatment decisions with women in the same boat as you are?
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Digger, I'm sure there were people earlier on this thread saying they knew stage III ladies who had survived to old age without recurrence who didn't even have the option of chemo in their day.
I'm stage III and I don't have much faith in chemo and didn't complete it, as I already stated earlier in this thread. I wouldn't recommend that to any one else. It's up to each of us to decide what risks we want to take and whether we believe the adjuvant! statistics. WOM asked people to please respect her choices and not tell her what to do but I guess that got buried in all the many pages of debate. She was also very upset at people who suggested she is not putting her children first.
This is exactly the right thread for the question asked. The premise behind the question is a false one, as a few cases either surviving or succumbing doesn't prove anything. But I'm sure that plenty have contacted WOM privately with their alternative stories where they won't get this disapproval. I'm sure she's more likely to take notice of people who she trusts than those who are critical.
As far as people's reasons for foregoing chemo, I haven't read one plea that hit the real reason. It's not about not wanting the side effects. It's about weighing the possible risks with the possible rewards, and many like me believe the risks are greater. As far as I'm concerned, once the surgery is over, the body either has cancer still in it somewhere or it's clear and I don't believe the chemo can eradicate cancer stem cells, otherwise no one would die from this horrible disease. Yes, chemo can shrink tumours but the stem cells remain to grow again. The larger the tumour, the more stem cells that are left and the quicker it returns.
I can't prove it and don't want to get into a debate, only time can prove me right or wrong as research progresses. It's gone 1;30am here in Eastern Australia so I'm off to bed.
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My sister died from a secondary cancer caused by her chemo. So real people do get these very severe side effects. And although they are rare, when you are the one who has the side effect, it does not seem so rare. No one treatment is perfect and hopefully WOM has gotten some private messages which have answered her original question.
Have a nice day.
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I'm sure she's more likely to take notice of people who she trusts than those who are critical.
Sheila, here's an honest question, not meant to be snarky or mean. Can one trust someone who is also critical? Why do trust and criticism have to be mutually exclusive? My point is that one is going to believe who, or what, one wants to believe, and my opinion is that's human nature. That's what I was trying to get across. I don't have any answers, never claimed to. I was just saying that one is going to post where one wants to get certain answers or anecdotes, whether those come in postings on this particular thread or through private messages. I'm not being mean or attacking, just pointing that out.
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FYI- By federal law all chicken old in US HAS to be FREE of hormones-here is a quote from USDA
"The USDA prohibits the use of hormones in poultry, hogs, veal calves or exotic, non-amenable species." (god help me I have no idea what non-amenable species are but I do not think I wanna eat them!
To justify high prices, all the packers add hormone free on the chicken packaging to make it look like something they did extra-not- just a marketing tool-they would be shut down if they used hormones .
Now beef is another matter. They are shot full of it. Too big of a $ lobby to regulate them.
As far as buying *all organic* that whole industry has to be considered carefully- once certain very specific measures are met-all bets are off and there is still a huge debate as to the major benefits. I am not saying there are not some good organic producers, but buyer beware. Again, a spike in price for perceived benefit rather than actual many times.
I like beef but understand i can't have much of it. So, for my monthly steak I make sure to buy the very best I can from a reputable company. Otherwise, no beef for me (cept for a little jerky now and then from Buckees-I know I know not good for me but I gotta have it once in awhile) now, i am off in searchof just whta in the hell non-amenable species are!
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Oh dear, I'm still up. You don't sound mean and snarky at all digger. I meant that most of this thread is critical. I know that people who are supportive of my choices are more likely to convince me to change my mind on any subject. When people disagree they tend to dig their heels in, so it's important to be supportive of each other even when we disagree. So I suppose it's about earning respect first before approaching differences. But many on this thread have gone straight into disagreement and unwanted advice which just won't work.
Do people really want to help or just to be right? If they want to help they will win trust and respect first. I hope that make more sense now.
Now, I'm really off to bed as my ability to make sense is diminishing by the minute.
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