Living after Cancer: Anyone beat it using natural treatments?

[mayaandx]

Hi everyone,

So I just got a positive biopsy for breast cancer. I am looking at all my options and meeting with a breast surgeon next week. Considering the lumpectomy, but not considering radiation or chemo. I have been aggressively looking into natural treatments, detoxing, herbs to shrink the growth, and so on. There is a lot out there. Almost too much!

So I would love to hear from other women who beat cancer using natural treatments. What worked for you? The medical system has never been kind to me but it feels like a big deal to avoid radiation. To meet others would really feel like a mental boost right now. I feel the mental is as big a part of staying strong as the physical, to not despair when hearing the C word.

Also, I am in downstate NY if anyone would like to meet in person.

Thanks all,

Maya

[MeepyCat]

There are some definitional questions there.  How do we define "beat cancer"?  What treatments are natural?  Everyone who I have seen make a credible claim to successfully treat their breast cancer naturally has had non-aggressive forms of cancer diagnosed at a very early stage. I'm really happy for those people, but I think it's important to be clear that not all cancer cases are the same, and they do not all respond to the same course of treatment.  I have HER2/NEU+ breast cancer, diagnosed at stage 2, with metastases to lymph nodes, which means I have nothing in common with Christina Applegate or Suzanne Somers, and that it kind of makes me crazy when people point out the efficacy of cumin for triple negative breast cancers (I don't have that kind).

There is some real concern in the medical community over whether cancers diagnosed by screening mammography at the pre-clinical stage necessarily need treatment - some cancers are slow growing and would genuinely never present with clinical symptoms within the anticipated lifespan of the patient, so it may be that diagnosis via screening is merely exposing certain patients to the risk, pain, and inconvenience of cancer treatments when the disease itself might not effect them.  (Also, do you care if you die of breast cancer in your 90s?  You're going to die of something, sometime.  Not to be blase about dying, but there is a point where you might decide that you've had a good run and treatment's not worth it.)

I'd be very wary of making treatment decisions in advance of information of the pathology and progress of your case.  Chemo is a big deal.  Radiation is a big deal.  No question.  And whether to have them is completely and totally up to you, a decision that only you can make, on the basis of the circumstances of your life and what you want.  Don't rule out those weapons until you know what you're up against.

[mayaandx]

So is the kind and level you mentioned (HER2/NEU+ ) diagnosed with a biopsy? They didn't tell me that. I know there is some in a couple of lymph nodes. Thanks for your info.

Maya

[MeepyCat]

So, this is a huge info-dump, and before I give it to you, I feel like I have to tell you that information is really hard to soak up.  You totally know that, but it's important to say anyway - there are a ton of things to know about cancer.  Don't make yourself read more then you can take in.  Some days, you might not be able to take in anything.  That's okay.  One day you will know about your cancer the way you know about your kids - it will just be information you have, stuff that you can pull out of your head when you need it.  You do not have to rush towards that day.  There's not an exam. 

It has really helped me to bring people with me to doctor's appointments, to be there for me, and to take notes.  Doctors *love* to info dump, and sometimes, all I can hear in those little rooms is the word "cancer."  If you don't know any really good notetakers, ask if you can record.  Because no matter how much you ask them to talk slowly and use plain English, they will wind up in medicalese, and very few people are really good at hearing the words surrounding the word "cancer."

There are a bunch of kinds of breast cancer - the things we can test for are estrogen receptor positive, progesterone receptor positive, and her2/neu+.  These are identifying markers about the way tumors grow.  A cancer can be one or more of these things, or none of them.  The type of the tumor will help identify which treatments are most likely to be effective.  Some cancers respond really well to chemo, or radiation, or hormone therapy.  In general, they won't ask you to go through a treatment that they think won't be effective.  So if your cancer has no hormone receptor features, hormone therapy won't do a thing, and they won't prescribe it.  If your cancer has features that make them think it won't respond to radiation, they'll tell you. 

I didn't get the type information for my cancer until I got the pathology report back after my mastectomy.  I don't know if they could have gotten the info from a biopsy, that's just not how it happened in my case.  I also didn't find out that my cancer had spread to lymph nodes until after surgery. 

The stage of your cancer is a way of describing how advanced it is.  There is a ton of information on cancer staging on the net.  To hit the high points:  Stage 0 is cancer "in situ", in breast cancer, it would be a ductal carcinoma that's entirely contained within the milk duct, and is very small.  Stage 1 is small tumors (under 2 cm. in all dimensions).  Stage 2 is tumors larger then 2 cm. OR smaller tumors with spread of cancer to the lymph nodes.  Stage 3 is "locally advanced" - large tumors and/or extensive spread to the lymphatic system.  Stage 4 is systemic cancer.  Based on what you're saying here (signs of cancer in your lymph nodes) you're looking at something like stage 2.

When I was newly diagnosed, a friend gave me her copy of The Breast Cancer Treatment Handbook by Judy Kneece, which I've found pretty helpful.  A lot of people have spoken well of The Breast Cancer Husband for their partners, but I haven't read it.  The hospital I go to has a cancer resource center with loaner books, which has helped me not have to spend money to figure out which books I want to throw across the room.  Is something like that available to you?

[mayaandx]

Wow, great info. I have had a biopsy with one lump showing positive for cancer cells and couple of lymph nodes.

The diagnosis was not made with mammogram and ultrasound. I'll have to see if I can get information about the pathology and type of cancer it is. I might have to wait for the lumpectomy.

Did you mean curcumin only works on triple negative cancers?

Thanks again.

Maya

[crunchy_mommy]

I was just diagnosed with cancer too and I'm at about the same point as you, waiting to meet with the surgeon, waiting for more info...

From what I understand, you will have a lot more info after your surgery. Then you will know what stage you are at etc. You will also probably need a lot more tests. I've already had a mammogram & ultrasound in addition to the biopsy but I will also need an MRI, blood work, and other tests before the surgery. I'm not sure yet if I'm a lumpectomy candidate... I suspect it's spread too much & I'll need a mastectomy but that's just instinct telling me that.

Usually I want to research everything to death but this time I just don't have it in me to learn everything there is to know about this. I don't want my entire life to be about cancer and I don't feel like I can keep a positive attitude if I'm spending all day researching and reading out-of-date but still-scary statistics... But it's good to start to get some idea of possible situations and treatment options. I don't want to go to the surgeon's totally clueless. DH is coming with me to that appointment (it's tomorrow) and we will try to take notes. I was reluctant but everyone I've talked to said to definitely bring someone with you, not just for the support but so there is a second person to help take in all that information.

I haven't looked into natural treatments yet. I think in this situation I feel more comfortable relying on mainstream medicine for my primary treatment, but eventually I may look at other options to add to my treatment. The biggest reason I'm leaning toward a mainstream approach is that I'm just not willing to take chances on my life when I have a young child who needs me. I also know that the type of breast cancer I have -- invasive ductal carcinoma -- is the most common type, so I feel like I can put more faith in the experience of doctors. I've had a lot of medical issues throughout my life and some of them have been less clear-cut or less common and in those cases I've turned to natural treatments but cancer is just not something I want to experiment with, I'd rather just let the professionals do their job & trust that it will work out. There are some harsh side effects but I feel like I can deal with them as long as I survive this. I also am a very anxious person, so I want to do what will make me feel most safe, calm, and at peace, and for me that will most likely be surgery, radiation, and/or chemo.

I tend to be very adverse to medical stuff. I don't take OTC meds, I see a naturopath as my primary doc, use homeopathics and herbal remedies, etc. Most of my previous medical issues have been non-life-threatening and I've had the leisure of time to try things out. I am actually afraid of mainstream medicine but I also know it has it's place, for me at least, and I don't want to make decisions out of fear. I also feel like there are other, more personal (vs. medical) decisions that I can make in this process that will let me feel like I have control. Like I know that I want nothing to do with breast reconstruction or prosthetics or even a padded bra. I don't want to wear a wig (and I definitely don't want to just wait for my hair to fall out... I will shave it myself if I have to start chemo)... I don't want unnecessary surgeries, and I plan to be judicious about my use of non-treatment-related meds like pain relievers etc. I guess I'm trying to find the areas where I can safely take control and have confidence in my decisions without worrying about whether they will affect my ultimate prognosis.

Please know that I am not pushing you to make the same choices I'm making... I have no idea if my path is the best one! Just wanted to share some of what has factored into my thought process so that maybe it will shed some light on your own decision-making. I am focusing on reading survivor stories, and a wonderful mama here has been sending me positive BC stories non-stop since I got my diagnosis. It is giving me so much strength and hope. And I will leave you with one of my own:

My grandmother had breast cancer at a very young age (26 I believe). This was back in the late 1920's/early 1930's. BC treatment was still in the dark ages back then. She had a double mastectomy. I think she had prosthetics and I never knew about her BC until I was an adult myself. My grandmother went on to live another 50+ years. She died around the age of 80 of an illness completely unrelated to BC. If she could survive way back then... I know you & I can survive this now.

[MeepyCat]

Originally Posted by mayaandx 

Did you mean curcumin only works on triple negative cancers?

As far as I know, it's only been studied on triple negative cancers.  I don't know if the mechanism of action that led them to test it is specific to triple negative cancers, though. 

[crunchy_mommy]

I also wanted to suggest this forum: http://community.breastcancer.org/forum/121 if you're looking to connect with others treating BC with alternative medicine.

[MeepyCat]

Originally Posted by crunchy_mommy 

Like I know that I want nothing to do with breast reconstruction or prosthetics or even a padded bra. I don't want to wear a wig (and I definitely don't want to just wait for my hair to fall out... I will shave it myself if I have to start chemo)... I don't want unnecessary surgeries, and I plan to be judicious about my use of non-treatment-related meds like pain relievers etc. I guess I'm trying to find the areas where I can safely take control and have confidence in my decisions without worrying about whether they will affect my ultimate prognosis.

I wanted to speak to this a little.

My reconstruction surgery went off the rails early on (leaking expander), and I spent seven months with very obviously only one breast.  I lost my hair pretty shortly into that.  I also lost my eyebrows and eyelashes - you have no idea how functional your lashes are until they're gone.  I don't have a wig, I didn't get a prosthesis of any kind.  I cannot wear standard bras at this time, I go with sports bras much of the time, because my surviving breast is sorta uncomfy if I go without.  I was surprised how few people look me in the breasts, actually, I always assumed everyone was staring at my chest, and apparently not.  The thing is, these choices make you very obviously a cancer patient.  And then people treat you like a cancer patient all the time, which you'd think would be okay if you are a cancer patient, but some people are dumb about how they treat cancer patients.  Sometimes I do not want to say "fuck cancer" with strangers in the grocery store, or compare my cancer to their Aunt Rita's, or hear how I should eat more lentils (in fact, during parts of my chemo, I could incapacitate myself with lentils, so just no).  There were times when I wished I'd made the time for the wig-and-prosthesis fitting stuff just so I could have a disguise that would keep people on the train from offering me "healing touch," or marijuana.  (I hear great things about marijuana for side-effect management, and I am not opposed, but I don't think you should take weed from strangers on the subway.)  Most days, having a book on hand does the trick. 

For me, pretty much the worst thing that could happen is that someone might notice that I have cancer and behave in front of my children like I'm gonna die.  (Which I will, but probably not from this, and probably not this year.)  When I'm out with my kids, I will sometimes take more steps then usual to hide what's up - baggy shirts, headscarves that look religious in nature.  I had to make some decisions early about what to say to strangers about my illness to keep those conversations to a level I can stand, that won't be confusing or distressing to the kids.  Especially early on, this was really hard.  For some reason, losing my hair really brought home a lot of distress that I'd not been letting myself feel about my diagnosis, and for a couple days, I wanted to howl every time anyone asked how I was doing.  I felt like, if someone asked me about my cancer with the kids around, I was going to freak them right on out.  Sometimes a wig and a soft prosthesis seem a million times easier.  Don't hesitate to protect yourself if you need to.

[crunchy_mommy]

Yeah I realize I might change my mind once I'm in the thick of it! I guess it just freaks me out to think about having a reconstruction or even just wearing a wig. I don't know why, it's just... scary to me? But I get what you're saying too. One thing in my favor is that I tend to go through life basically invisible. It's hard for me to imagine anyone making comments to me because apparently I give off a weird vibe that makes me disappear. Or maybe I just don't hear what people say... which is very likely, I've got some social issues... and some hearing issues... and I have no idea how I ultimately come across to others. I don't want everyone to know I have cancer... I don't want even my closest friends to know (though I did end up telling a few of them). I definitely see myself as the baggy-shirt hat-wearing type. I don't know. I'm talking in circles because I still have a lot of anxiety around all this. I don't even know if I'll need chemo, or what my surgery options will be, so I'm jumping the gun I guess... but I do feel like the cosmetic things are slightly more in my control whereas the cancer is not and I need every little bit of control I can get because, well, I'm a control freak. Eek... how do you do this? Just talking about it is making me jittery. Sigh.

It's good to hear from someone who's a bit ahead of me in this process... thank you.