complementary vs. alternative?

Hi all,

Just want to point out also that Kat is ER-/PR-, a group for which chemo has shown to be most effective. Also, she is 32 years old (she wrote in a post somewhere.) Chemo is also more effective for the pre-menopausal crowd.

Out of a large pool of early-stage ER-poor women under 50 (including node positive and node negative), 25 percent who had chemo recurred within 5 years, compared to 39 percent who did not have chemo. (Data from metaanalysis by the Early Breast Cancer Trialists' Group, published in the Lancet. Link here:

http://www.ctc.usyd.edu.au/cochrane/publications/EBCTCGpaper.pdf

Kat, as to your question about skipping surgery...in my opinion, it's not a good idea. You'd be leaving the tumor in there to potentially seed distant metastases which could kill you....and even if it never metastasized, it would continue to grow and eventually break through your skin to cause bleeding/infection/horrible smells/even death -- and you would certainly lose your breast then.

Overall, the best line of defense against breast cancer seems to be hitting it hard as early as possible with the tools we *know* are effective...at least for some people. It's impossible to know specifically who the treatments will work for, and who not.

I might be wrong, but I think that if you chose to skip the treatments that have proven effective (surgery/chemo, etc.) and your cancer progressed and became terminal, you would probably regret not doing what might have saved your life. You have the chance right now to beat cancer, I hope that you -- and all of us -- do so!

kks_rd, one more comment and then I'll shut up. In my experience, the people who held the strongest opinions of what I *should* do were the ones who never had a cancer Dx.  All the women I know who are long-time BC survivors (10 yr, 15++ yrs) or who knew a lot of BC survivors (women who volunteered at our local BC support center), always framed their statements with phrase like "it varies for different women" or "this is what it was like for me." So if someone is suggesting you only do alt treatments and not even consider traditional treatment, that may be a big red flag.  Tangentially, when my hubby is faced with a decision with a lot of unknowns (i.e. investing in a volatile stock market) he asks, "What choice can I make so I won't feel stupid a year from now?"   Obviously we all want the best possible outcome, but our decisions have so many unknowns that it makes them a bit of gamble.  We each get to make our own decisions of what's best for us, based on all the info that's available right now. My BC counselor said the ideal goal is to make decisions so we have no regrets, regardless of the outcome. If I choose one option (in my case, no chemo) and then it turns out my guess was wrong (a mets occurs) how will I feel?  Good luck!  If it's any help, one volunteer told me that this info-gathering and decision making process was the most emotionally difficult part of the process for her. Once she started treatment, things calmed emotionally. That's been the same for me.

No one can *get* chemo unless it's offered by their doctor. So it doesn't much matter what we recommend...

But with Kat's stats, if they are correct (the size, receptor status, and age), she will be offered chemo...if her doctor follows the standard of care.

Evebarry, you say that "usually early stage cancers don't require chemo." Actually, many do. Those that have particular 'poor prognosis' features, like young age, larger tumor size, HER2 positive, LVI, ER/PR negative, etc....are offered chemo.

P.S. Don't let "poor prognosis" scare anyone, it just means that about 10 to 20 percent or more will have a recurrence....it does not mean that everyone is doomed!

Sherbear,

To me, based on my time on BCO, it feels like the nasty, totally unsolicited comments being made to thenewme by Luan et al are so creepily similar to others made before.  Thanks for interjecting an objective comments.

Frankly, these really creepy people on BCO who scream troll and are nasty all the time take so much away from this site.  These creeps are why I don't come here that often anymore.  I can't imagine if I had any personal information here..as we've seen, they use it to their own advantage and personal agendas.  Really a shame to ruin a whole site, but I guess it makes them feel more powerful?  Who knows... 

I give up on trying to paste the link and edit the prior post.  Here is another try to provide the MD Anderson link. - Claire

http://www.mdanderson.org/newsroom/news-releases/2010/md-anderson-study-finds-increases-in-five-10-year-survival-at-every-stage-of-breast-cancer-over-six-decades.html

Thanks on the avatar Deanna.  Yes, ski season is over and on to cycling.  I have a wine country adventure planned for this coming weekend, including a canyon ride on Sunday and a half century on Saturday.

The shades are because I ran over my old ones giving my car Rexxie a post-season spa day at the U-Detail-It place.  So off to the resale shop and of course the Chanel ones were the ones that did it.

I need to get back to what I told my client I was "working on".

Shirt is one of the ones designed by Everyminute.  It was finally warm enough here to wear it last Saturday. - Claire

Claire and Deanna, thank you so much for ALL your posts to date! I don'y write much and often but read everyday and I have to say that you are both most respectful, well informed and inspirational. Claire, I am also huge biking and skiing (downhill) aficionado, so I understand your "drive".

Best to all,

Agnieszka

I am in St. Louis so not much skiing here either but I do take anventage of any opportunities during winter months.

Dear Kat and Pat,

Don't mean to burst your bubble, but I turned alternative when I was first diagnosed as Stage 1 a decade ago, and now today I'm Stage 3 with a massive tumor which has broken through the skin and covers my breast, and has just extended to my upper torso and towards my right armpit. It is ulcerating, fungating, oozes fluid like a tap and stinks horribly. In the past 2 years. my oncologists have tried hormonals and chemo but the beast keeps surfacing and growing. Meanwhile, I continued living a very healthy lifestyle (something I've done for more than a decade, which included taking complementary supplements, foods,and trying alternative therapies like the Budwig Protocol (that one made the cancer grow even faster).

I had a lumpectomy at Stage 1, nothing else. My onco then said that chemo wasn't necesaary and I refused Tamoxifen because my DH and I didn't have any kids and wanted a family. Well, the cancer recurred about a year later but I stuck to a purely alternative route. The lump stayed no larger than walniut-sized until about 3 years ago, when it started bleeding. That's when I tried the Budwig Protocol for the following 14 months. During that time, the cancer grew so much that it covered more than half my breast, was lumpy all over, turned a maroon red and bled copiously.

After putting me on just oral chemo and Tamoxifen, tmy first onco managed to reduce the growth to nothing. Normal skin even began to grow back and I could see a breast appearing again. We worked on letting the damaged area shrink and heal further before attempting surgery. Unfortunately, the cancer recurred before that could happen. Sadly, a series of errors happened which delayed treatment for almost 2 months and caused the cancer to spread considerably during that time. The biopsy was delayed for almost 2 weeks. Then the lab got the results wrong, diagnosing me as ER-/ER- and HER2+ when I was still ER+/ER+ and HER2-. Unfortunately, my onco had just quit to join another hospital, so he had no access to my report, so nobody noticed the error until a new onco was assigned to me a few weeks later.

So the cancer re-established itself firmly in my breast, and has been growing ever since. All hormonals don't seem to work for me now, and chemo only causes the tumors to retreat for a while. Surgery would only be palliative and cause me a lot of pain and suffering as a great deal of my chest, upper torso and back would have to cut out. I have been told the cancer will recur anyway, and death was very likely.

I still try to keep up with my healthy lifestyle and diet, plus some supplements. I've done practically every alternative therapy you can think of over the years, and none stopped the cancer. I've just started on a Gemzar and Carboplatin chemo cocktail. It's been two infustions so far (yesterday was the second) and the tumors have shrunk by about 15%. I'm also taking Indian frankincense (Shallaki or Boswellia Serrata) capsules and Middle-Eastern frankincense (Boswellia Carteri) essential oil mixed into my wound dressing. Both are anti-infammatory and anti-tumoral.

Pat and Kat, if I were in your shoes today and had the knowledge and experience I have had, I would seriously consider some conventional treatment, while continuing with a healthy lifestyle and diet. Don't wait until it's too late. You don't want to look the way I look today, and suffer as much as I do everyday.

chillipadi 

Chillipadi - Thankyou for sharing your story. I'm so sorry you are in this situation - my heart goes out to you. Hopefully your experience will knock some sense into those who are considering alternative treatment only.

Sue

kks - If you are triple negative as I think you are, based on your signature, I would suggest researching that type of breast cancer and look at the treatment options. My onc said I was fortunate being triple positive as there are targeted therapies to deal with the HER2 status and the hormone receptor status. There is a triple negative forum on here - go and read some of it. There is also a forum for BRCA1 people - read some of their stories. I hope you come to a decision that is right for you - all the best.

Sue

dlb823.   What were the scientifically proven CAM therapies that you did?

Thank you

kks_rd,can you ask your doc to run the test to find out if its HER-? It might be good to know. FWIW, on my biopsy sample, the path lab messed something up and had to do a "do over" (restain the slides, etc). So it's not unknown for them to deviate from the normal routine. Of course, my hubby always asks if the test results are "actionable." i.e. if you know this result today (vs. when you get the final path report), would you do anything differently. Maybe not...

When  I was diagnosed I took awhile to tell people. Guess what? I already knew long-time survivors without realizing it (a former co-worker's wife was diagnosed at 31 and is cancer-free, 30 years later; one of our neighbors is around 70 and was diagnosed 15 years ago. Both caught their tumors early and did conventional treatment --both did MX; the neighbor followed up with Tami). I've gone to some cancer related services (I'm not mentally ready for an official support group yet) and even though I'm kind of shy, I've met people there. Everyone is very open and supportive. They're your tribe.  I wish you had some support center near you. Here in No. California there are so many support services, it's kind of overwhelming.  In terms of CAM therapies, I talked to my RO about this yesterday. (he's head of the RO dept, teaches at Stanford and is also open minded. i.e. He initiated getting CAMs at his medical center; and along with traditional medical advice, he said to eat cruciferous veggies several times a week) When I asked how would I know which CAM are proven, he said the ones they offer are the ones they've screened and have proven to have some effect. He seems particularly open to the mind-body connection ones, like healing imagery, as CAM. So maybe one place to start is to see what the cancer centers are offering, even if they aren't located near you. What does Sloan-Kettering say, for example? For some reason, I cannot paste a URL here, but if you google "stanford cancer support" you'll find a link to their list of CAM. There's also a link to Breast Cancer Connections, a well managed support place here in No. California.  It sounds like you're not local but I wonder if you contact them, maybe they might know of support centers closer to you  or ??? Obviously you've hit upon a topic that's of interest and concern to us all, even those of us who are ahead of you on this journey by many months and years.

patzee - you wrote - "So, what if someone does every conventional treatment possible but ends up with metastasis nontheless.  I think I would feel pretty upset about that."

Yes you might be upset, but at least you would know that you did everything possible. We are all in that situation, but I will never regret throwing everything I could at it. I get very upset when I read about women who are Stage IV from the first diganosis because they didn't get that chance. If you end up Stage IV one day (I sincerely hope you don't), I hope you don't regret not having had chemo. You can't go back and change your decision. I always said I would never have chemo too, but when it came down to it, I would have been crazy to refuse due to the HER2 issue.

Sue

This idea of "exhausting alternative treatments first" might work for other diseases but not for cancer.  Your best shot against cancer is your first shot and if it recurs or metastasizes you will be playing catch up.  Some women are fortunate and they can catch up.  Most don't.

 I agree with Yazmin that we need to be more targeted in our treatments.   Breast cancer is further along in the individualization of treatment than other cancers, but still we over treat some women and under treat others.  But your cancer is specifically the kind for which chemo is most effective.  So please consider that you might be in the sweet spot for conventional treatment.  And that you can supplement with complimentary approaches.

 Frankly, it sounds like this wouldn't be an issue at all for you except for some buttinskis putting a bug in your ear with their theories.  These people should not be putting pressure on you. especially since, I assume, they've never had cancer themselves.  Stand up for yourself and decide for yourself.

 The conventional treatments aren't fun but you go through them and they're over and you move on.  I'm more than 6 years out from my treatment and recently ran my first marathon.  you can do this.