WHY would I put myself through this?

Omaz...I will check out the links. Thank you. I do most of my research using pubmed.org.

Digger, and a few others may not realize that wornoutmom was on conventional treatment when she posted here. She was then looking into alternative treatment. It was after being dx with stage IV that she went to this alternative cancer center where she has found help, and her numbers are dropping, which is good. She is doing great, and I sense a lot of hope in her voice.

I got a call from a man last week who was dx with terminal cancer 13 years ago. He was given months to live. He went to this treatment center and 13 years later he is doing well. He does not work for the alternative treatment center...just gives calls to people who are interested. My husband got an e-mail from a friend yesterday who has brain cancer. He said when on alternative treatment he was doing well. His parents insisted he do chemo and he said he had nothing but problems. He said, his doctor said the chemo would not cure him, so he's considering going back to alternative therapy.

For those who have small and earlier stage tumors perhaps it helps. It also helps if your body is young, and your immune system strong enough to fight the disease. But, I've read the survival rate of chemo for 5 yrs ( later stage) is 2%. I could be wrong so feel free to correct me.

I'm not advert from taking herpectin. If I learn after mx and complete testing the cancer I now has spread elsewhere, I would consider herpectin. If the oncologist insist I take chemo with it, I will find another oncologist who would let me do herpectin alone, or just go alternative.

Digger feels it is her job to educate those who choose alternative therapy from a future death sentence. Impositive feels as strongly that there are alternative natural ways to fight cancer so without apology these women come across strong . Both women put their life on the line for what they believe. I respect that.

I know that the road I'm on is not well supported or popular here at bco. If I were to be dx eventually with a later stage cancer, it is not because I chose not to do chemo/herpectin. There are women who chose "standard care" who have recurrences and their cancer eventually is too staged IV. "There are no guarantee's in whatever choices we make. I haven't yet been treated with either, standard or alternative. I've only been on the road to the why is my body broken?

Another thing..Eve...When you mentioned you now have a new breast cancer, I was truly shocked and sorry.  I also would like to further understand how you got to this point.  I recall one of the doctors telling me that if I got a new breast cancer, it would more than likely be another mucinous breast cancer.  He said that because he thought that was the kind of cancer my body likes to make.  I'd really like to know if you're getting genetic testing and understand, if there is an explanation, why now you are facing a very aggressive breast cancer after having a indolent one before.  Hmmm...

Eve - I am so sorry about your recurrance. But I have a question i have always wondered about and maybe you can answer.  Is IDC a result of DCIS that has 'broken out'? I.e. if I had found my IDC earlier, would it possibly have been DCIS then? Or are they two different things? 

In other words, does DCIS BECOME IDC?  It doesn't seem to be size-based, as some women have LARGE DCIS that hasn't become IDC, and some have SMALL IDC that has broken out of the duct already?
I hope this makes sense.

Thanks in advance. 

Amylstrong...DCIS left in the breast, especially the higher grade 3 can breaks through the ducts and become idc. This is what happened to me. It doesn't matter the size. From what I read the dcis just has to develop an invasive conponent. I've always wondered what the invasive componest was.

Eve,

Your post is full of outright misconceptions, and I'm not saying this to be malicious, I'm saying this because your statements are patently false, and from where I sit, they are not factual information from which to base an informed decision.

But, I've read the survival rate of chemo for 5 yrs ( later stage) is 2%. I could be wrong so feel free to correct me.

No, that's not true. Your other statement:

If I were to be dx eventually with a later stage cancer, it is not because I chose not to do chemo/herpectin. 

Actually, if you were to be diagnosed with late stage cancer, it's a lot greater chance that it's because for that exact reason, that you chose not to do chemo/herceptin (really, it's the herceptin part of this equation) than if you just let it be.   

I'm not being malicious or spreading slander here, I'm just stating facts.  You have wonderful anecdotes of the friends who died from chemo and not the cancer, and so on.  Anecdotes are beautiful, they really are.  But cancer is not a little game to play with anecdotes here and there. You've seen first hand when you don't take it seriously.  And I stand by my statement that impositive's logic is fulll of holes.  It's not a "I said, she said," that's missing the entire point of my earlier post.  It would be absolutely fabulous if all choices carried with them the same implications, just pick and choose whatever suits your style.   They do not.  To paint them as absolutely equal is equivalent to spreading lies.  

And finally, for those who say alternative is just as efficacious as conventional treatment (once the cancer is already diagnosed) but the big medical industrial complex just won't support "out of the box" treatments, I am asking again for impositive and wornoutmom to share their progress, their data with us.  If your main argument is that alternative is equally effective but there's just no data printed, then share it!!!  Please!!!  We all want to hear.  But don't fall back on that argument if you refuse to share your treatment regimen.  And we don't want to hear "I feel better than I ever have, more energy, etc."  We want to hear where you are in your breast cancer journey, what your treatment regimen has been, etc.  

I don't think all DCIS turns into invasive. I had a tumor that was IDC mixed with DCIS. There is a component that turns DCIS into invasive I believe. I am not sure, hopefully someone here knows the answer.

Amy, to your question "does that mean that all IDC was DCIS first and then BECAME IDC?" the answer is "No".  From what I've read, about 80% - 90% of cases of IDC start out as DCIS, not 100% (i.e. all) of them.  I admit that I have no idea how the remaining 10% to 20% of IDC starts out since it's called "IDC" (invasive "ductal" carcinoma) so it seems logical that it would have started in the ducts. 

Your comment that "some women have LARGE DCIS that hasn't become IDC, and some have SMALL IDC that has broken out of the duct already" is completely true and is an excellent description of one of the big unknowns about how DCIS progresses to become IDC.  Sometimes the progression from DCIS to IDC happens almost immediately after the development of just a tiny bit of DCIS.  Other times - my case, for example - there can be lots of DCIS (I had over 7cm) before the IDC starts to develop (I had just 1mm of IDC).

As for how DCIS becomes IDC, at this point it is believed that while DCIS cancer cells have most of the properties of IDC, these cells require one last molecular change to give them the capability of breaking through the milk duct and surviving and thriving in open breast tissue.  There have been many pieces of research on this, trying to figure out what that molecular change is and what triggers it to happen.  Lots of theories and suggestions on what it might be, but no answers yet. 

When DCIS cells undergo this molecular change, those cells in effect become invasive cancer cells.  For someone who has an area of DCIS in her breast, having a few DCIS cells under go this change doesn't mean that all the DCIS cells will undergo this change.  This is why IDC and DCIS are so often found together. When IDC develops in one area of the DCIS, all the DCIS cells in the breast don't suddenly convert to become IDC.  Some of the cells remain DCIS and remain contained in the ducts.  But the DCIS cells that underwent that molecular change are able to break through the milk duct and spread and multiply in the open breast tissue (and possibly, beyond).  That's my understanding from what I've read (but understand that I'm just a lay person and BC patient like the rest of you; I'm not a doctor or a scientist).

As for whether all cases of DCIS eventually evolve to become IDC, many so-called "experts" say that many cases of DCIS will never develop to become IDC.  The real truth is that nobody knows. Pretty much everyone agrees that all or most cases of aggressive DCIS (grade 3 with comedonecrosis) will eventually become IDC.  The questions lie with lower grade DCIS and whether all of these cases of DCIS will over time evolve to become IDC.  Studies have shown that many cases don't progress over periods as long as 15 or 20 years.  On the other hand, studies have also shown that some cases of DCIS can progress to become IDC even after 20 or 25 years. So maybe after enough years (30? 40?) all cases of DCIS might in fact progress to become IDC. Yet another unanswered question.

To the earlier comments about HER2 status and DCIS, yes it is true that a much higher percentage of DCIS cases are HER2+.  About 40% - 60% of DCIS is HER2+ whereas only about 20% of IDC is HER2+.  The problem is that no one knows why this is.  Is it because HER2+ DCIS is less likely to progress to become IDC?  Seems hard to believe, but there is one study that showed this to be the case (then again, there are other studies that show the opposite).  It is because the HER2 status of the cancer cells change when the molecular change occurs and the cell converts from being DCIS to IDC?  Maybe.  But it's because of these unknowns that we have to be careful to let women with DCIS know that for them, HER2+ status does not have the same serious implications as HER2+ IDC.  And if someone has DCIS and IDC together, it's really important that the HER2+ status be checked on the IDC, not the DCIS.  

Now, on to decisions facing TheLadyGrey.  I find it interesting that so many of the people who've posted here see this to be a black & white situation with a clear decision. I don't see that at all. To me, it's very grey (how appropriate!).  Without question HER2+ is scary and and an HER2+ cancer is a very aggressive cancer.  But all cases of HER2+ cancer are not alike.  The risk of a mets recurrence that someone else with HER2+ cancer may have faced is not necessarily what TLG faces.  The fact is that current treatment guidelines suggest that Herceptin and chemo be considered for HER2+ cancers that are >5mm in size.  TLG's HER2+ invasive tumor is 6mm in size.  Just over the line.  So I believe that the answer lies in TLG understanding the specifics about her risks and the benefits that she will get from the various treatments.  This is information that she hopefully will get from her oncologist.  Specifically, what is the risk of mortality with 1) no further treatments? 2) the addition of Herceptin alone? 3) the addition of Herceptin and chemo? 4) the addition of Tamoxifen or an AI alone? 5) the addition of Herceptin, chemo and Tamoxifen or an AI? This will explain to TLG, based on her specific diagnosis and pathology, what benefit she will get from each of these treatments.  Then the next set of questions relate to the risks from these treatments.  What is the risk of long-term and/or serious side effects from Herceptin?  Chemo? Tamoxifen?  An AI?  With that information, she can weigh the benefits against the risks and decide which treatments provide enough benefit to warrant the risks.  Without that information, I don't see how she, or any of us, can know what the "right" or "best" decision is. It's important to remember too that what's "right" for one person may not be "right" for another.  One person might choose chemo and Herceptin if it increases their chance of survival from 87% to 92%.  Someone else might look at those same numbers and decide that the risks from these treatments are just too great for that level of benefit. We each have the right to make the decision that is "right" for us. 

Lastly, since I'm someone who prefers research to anecdotes, and since I've read a lot of anecdotes here but no research, here's are a couple of links to studies on small HER2+ tumors and the benefits of Herceptin:

http://jco.ascopubs.org/content/28/28/e541

http://journals.lww.com/oncology-times/Fulltext/2009/02251/Trastuzumab_May_Benefit_Patients_with_Very_Small__.1.aspx 

Bessie... Although NCCN 2011 breast cancer treatment guidelines recommend chemo and Herceptin for tumors over .5 mm... I have read on these boards that a number of doctors are ignoring that recommendation and ARE RECOMMENDING chemo and Herceptin for smaller tumors and/ or younger women. The guidelines are just that... A guideline. I think that is why it is so important to trust your doctor... After you've been informed.

Beesie - thank you so much for such a comprehensive answer.  I really appreciate it.

The whole alternative/traditional conflict seems to get people raging like nothing else (well, maybe the yes-or-no Tamoxifen question comes close).  It is an individual choice, but one person's choice (and the passion with which they embrace that choice) seems to threaten others. I just want to say - ALL the choices suck. All the risk factors suck.  Once you have been diagnosed, it is ALL upsetting and challenging and a journey into the unknown.  Can we all agree on that?

The other thing I find interesting is - some people who have been living unhealthily feel that if they make major lifestyle changes, that  may be sufficient. But I know several cases of women who were SUPER HEALTHY in terms of lifestyle choices - perfect weight, fitness, all organic produce, etc etc and got BC anyway. I guess I feel that if you want to PREVENT bc in the first place (and other types of cancers), go ahead and live the healthiest way you can. But once you already HAVE cancer that has started growing in your body, it is probably not enough to just change the lifestyle issues to make it go away (or keep it from spreading or returning). Just my thoughts.

I combined all the traditional treatment I needed with lots of alternative support. I saw a naturopathic DO throughout chemo and he and I crafted a plan of supplements to deal with the SEs I experienced, and to avoid others entirely. It worked wonderfully. Not to say it was easy - it wasn't. But I had no neuropathy, never needed the Neulasta shot or a transfusion, no nail problems and so on.  For me, this was the best of all worlds. The onc didn't like the naturopathic approach but - tough! I drew a line and said I was doing it anyway. He did ask me to forgo any antioxidants the 4 days before/after each tx, which I did.  There is a lot of room for alternative support during traditional treatment. It worked very well for me.

Again, thanks Beesie. I guess I always wondered if I had caught my lump earlier, if it would have been in the DCIS stage. But I can see now that there is no way to say.

Amy 

T heLadyGrey I have only read your initial post. As someone who is also triple + and had the nail issues really bad ( every sing toe & fingernail effected. Got the smelly ooze etc.) as well as a few other SE if I had to do  it again I would. Why? Because cancer has far worse SE.

I too was so scared. I though after chemo I would look like crap etc. Well maybe right after chemo ended I did look like crap but after a few months I  looked better and better. Check out my hair transition link. You can see that as I got further away from chemo I looked better. I've noticed this with many others too.

There is risk in everything we do. That's part of life. Don't let the fear get in the way when you make your decision. Not everyone gets these SE. Almost no one gets them all.

BTW my  eyes actually improved. I don't know if it was chemo but I don't have an astigmatism anymore. 

Lago, You look great!  I think the really short hair suits you. (As in the 7/7photo). 

Eve, these days it's not unusual to test DCIS for HER2 status.  It doesn't impact treatment but there are a few clinical trials on HER2+ DCIS so it's information that might be useful in the future. In the past, although DCIS patients often weren't told the HER2 status, this doesn't mean that it wasn't tested.  I was treated at a hospital that is one of the top cancer research hospitals in the world. I signed a release that my samples and results could be used in research.  So I wouldn't be surprised that although I was never told the HER2 status of my DCIS, it was tested and recorded somewhere.  In the studies I've read, they've either tested the HER2 status of the DCIS right from the start - doing so because they had the study going on HER2 status - or they've gone back to samples that have been kept from earlier surgeries and tested them after the fact so that the data could be collected for the study.  Getting this information is really not difficult, even if it's something that wasn't done as part of the patient's pathology report.   

I thought of chemo drugs as ruthless, trained assassions; working FOR me, against the true enemy, the terrorist cancer cells, who would SURELY kill me if given the chance.

I believe we all have reasons that no one can understand when it comes to making decisions about how they manage their breast cancer.  I myself strongly believe in putting quality of life above all else.  I am treating my bc my way.  Doctors make suggestions but there are no guarantees.  You have to go with your gut feeling.  Then no matter what happens you have to be happy with that decision.  No one should try to convince another person to follow their advice.  No one should put fear in the hearts of anyone.