Am I crazy for trying an alternative treatment?

shockedat29

Warning: this post is long and it may seem like I'm saying a bunch of jibberish, but I just had to write down all of my thoughts. Has anyone shared a similar experience/feeling to mine?

A little bit about myself: I am Chinese-American, so growing up, my mom has been a huge proponent of Eastern medicine (not very trusting of Western medicine, or maybe just not as familiar? not sure). I'm also kind of a millennial health freak... I buy organic produce, love eating salads, I don't eat fast food (except in-n-out occasionally, heh, hard to turn down), I don't eat burnt foods, turned pescatarian a few years ago, I only take aspirin if I absolutely have to, etc...I'm a total health nut (except when chips and fries are in front of me, but I try to not buy them for myself, hahaha)

So because my mom is so into Eastern Medicine, I've tried some alternative treatments before for regular run-of-the-mill illnesses/body pains such as coining and acupuncture. Some of the alternative treatments my mom has made me try has been questionable in terms of usefulness and effectiveness. I didn't realize how unfounded some of these treatments were until I grew up, went to college (where the internet really boomed with information), learned a little bit about statistics and studies, and grew super proficient at googling everything.

However, I still believe Eastern medicine can have it's place. I mean, most drugs are made from plants and herbs. But....I think dried up seahorses and bear bile are really out there and crazy.

So to summarize: I kind of believe in Traditional Chinese Medicine (TCM), but I am still skeptical of it

Anyways, onto my BC story...

Back in mid-Nov, my breasts started hurting, just like they would hurt during my menstrual cycle, but it was persistent for two months. Also, I felt a noticeable lump, maybe the size of a pea. After the holidays, I called in to get it checked out.
1/23 - I went to see an OBGYN
2/9 - Went to the Breast Care Clinic and they did a fine needle biopsy
2/16 - Went back to get Ultrasound & Mammogram. They confirmed that it looked cancerous. Did a core needle biopsy
2/28 - Met with Plastic Surgeon and General Surgeon, scheduled surgery for end of April.

The reason why the surgery was schedule for the end of April was because when I told my mom about my cancer, she said she knew this guy in CHINA who uses acupuncture and other TCM, and HAS HELPED PEOPLE CURE THEIR CANCER. Of course....I'm skeptical because this is of course CANCER and not just a muscle ache or anything. But at the same time, I kind of want to believe that it will help. Long story short, I expedited my renewing my passport and was just approved for my visa. I'm leaving on Tuesday for a month. I feel like a crazy person chasing after a "non-evidence based" treatment, but I feel like I owe it to myself as a "health-nut, all natural person" to try it before I decide on surgery.

The thought of surgery and having to go through hormone pills (at the minimum, might be radiation, or chemo) freaked me out. The hormone pills are recommended for 5 years and it'll effect fertility. I mean, I'm 29! The thought of taking hormone pills scares me because I don't even take birth control. I'm not ok with having all these unnatural chemicals and procedures done on my body without trying something else first. Still...as an educated person who understands the importance of clinical studies, I can't help but want to find something else even though the standard practice (surgery, hormone pills) is effective.

In the meantime, I've been eating lots of ginger, garlic, turmeric (with oil and black pepper), cruciferous veggies, and reading about other alternative treatments. I've been on so many blogs about how people have cured their own cancers. But being the skeptic I am, I look for holes in their stories, or I google a person's name with the word "hoax." A lot of times I find that people's stories are not what I'm looking for. Many people with blogs who have "cured" their cancer, get surgery, but decline chemo or radiation. However, they didn't cure their cancer, their surgeon did when they cut it out. And their surgeon did such a good job that they took it all out and didn't have residual cancer cells that chemo or radiation would have killed. So I started to look for more "science-based" treatments that were not standard practice.

I found two alternative treatments that has been tested by "Western Medicine" and I found hyperthermia and HIFU. I bought these heatpacks to put on my breast to see if it would help (doc. said I could keep doing it but doesn't think it would help.) HIFU (high-intensity focused ultrasound) seemed REALLY promising. It's FDA approved for prostate cancer, and it could be a replacement for surgery. However, when I spoke to a really renowned breast cancer surgeon (who I was able to make contact w/ due to a surprising connection from someone at work) about HIFU, she didn't seem to enthusiastic about it because the effectiveness rate of HIFU was just not as effective as the standard treatment.

Feeling disappointed about not having much support about hyperthermia and HIFU, I decided to look into how acupuncture and TCM could help with cancer and it's making me want to believe that it could help. So apparently, the guy my mom wants me to see is trying to strengthen my immune system so that my immune system fights off the cancer itself. They say everyone has pre-cancer and cancer cells in their body and the immune system is constantly fighting them and the ones that develop cancer have weaker immune systems. Later on, I read about cases were cancers spontaneously disappear on their own. These are called "miracles," but....they don't miraculously disappear...the immune system definitely played a role. So those were all my thoughts as I was trying to rationalize going to China for a treatment that I'm so skeptical about. It totally makes sense to me....

I don't know...I feel crazy, but I also feel hopeful. Oh I also need to add in that my mom is a massage therapist who studies various massage practices such as acupressure points and meridian flows, stuff like that. She had this one client back in 2009 who was diabetic for 12 years, had to take a bunch of pills daily and needed a cane to walk. My mom massage her twice a week for 2 months and the client lost weight, didn't need to take medication anymore, and no longer needed her cane. It was shocking that her massages were so helpful. My mom says even TCM doctors don't believe her, but I've seen it, I met this lady a couple of times. So I know that methods that aren't "standard" can be successful. I guess that's what I'm hoping for when going to China.

Also, in these last few days, my lump has been harder and harder to find...it kind of seems like it's smaller, but I'm not trying to get my hopes up. After China, I'm going to come back, get a check up and decide if I move on with my surgery appointment.

I just felt like I needed to document my true and honest story on trying a treatment that isn't considered "standard care." I'm not selling anything like any of those blogs you read. I just needed to write down my entire thought process in these last few weeks. I feel like if it's not successful, then people need to know. But if it is successful...then...oh my god....

ksusan

While you're in China, perhaps you can meet with a doctor who balances hot Western medicine with cool treatments to keep the body harmonized? It might be helpful to hear that perspective as you decide.

THelper

Hi shockedat,

Felt sad that you have to be here with such young ages. However, I don't want you to cut short on all possibilities, even though it is frightening. You got so much more to see. Anyway, the alternative medicine are always controversial, approach it with strong heart and steady mind are a part of complementary medicine as well. If your mind are set to goes with alternative treatment, i suggest you look for integrative treatment. These type of clinics always point you to every possibility of trial and treatment.

best of luck.

swg

You didn't post any of the info about your tumor...what size? what type? Do you know any of the info from the pathology report?

That would help..

shockedat29

Hi Swg,

Apologies for the lack of information, I just created this account, but I've updated my diagnosis information. I was tested for HER2, but the test came back "equivocal." My surgeon said she would test again after surgery. However, the second doctor that I spoke to emailed my current doctor recommending other tests to figure out the type before doing surgery.

The size on my biopsy report says 6mm, but since I'm young and still have dense breast tissue, the doctors are reluctant to confirm the size as what was shown on my pathology report.

shockedat29

Hi THelper,

I think I've come up with a plan to try the alternative treatment alone w/o closing the door to the treatments that my surgeon has recommended. I'll be in China for a month, doing whatever treatments the acupuncturist wants me to do. The acupuncturist says I'll be his sole focus during the month. When I come back, I want to get retested to see if there have been any changes. If it shows that my month in China did nothing, then I will be openly and all in on the standard treatments that my surgeon wants to do. I think I just need to try this for myself, so that I get peace of mind knowing that I tried my best with the natural, holistic, voo-doo-y stuff before agreeing to something that changes my body so much.

Heidihill

I think you should find out definitively what your HER2 status is. HER2 positive is more aggressive and may not be as responsive to TCM. The garden variety breast cancer is not HER2+ and if TCM works on the garden variety it most likely has not been tested on rarer mutations. My two cents. It is best to know exactly what you are dealing with in any case. I would listen to that second doctor. 

Yes, the non-Voodoo stuff changes your body, but it could be worse. TCM and massage are great complementary therapies to help you heal.

ksusan

Acupuncture is also a good complementary approach for some people. Some allopathic cancer centers offer it.

bluepearl

My opinion. Do the conventional therapy first. Then the voodoo.

dtad

bluepearl...calling alternative treatment voodoo is very judgmental. This is a thread for people interested in unconventional medicine. There should be a safe place on this forum to discuss it.

shockedat29

hi dtad, I'm the OP and I actually used the word "voodoo" first. It wasn't meant to promote a space that wasn't safe, but I used it because I know how much doubt and skepticism there is towards seeking treatments that aren't the standard care of treatment. In my OP, I wanted to show my hopefulness but also skepticism.

I'm sorry about using the "voodoo," I'm just hoping people who are also as conflicted as me about being interested in TCM see this post and can relate.

Thank you for reading.

shockedat29

really? Darn...I'm thinking the opposite...I'll let you know how it goes.

shockedat29

Thanks for the input Heidihill, I'm going to email my doc to request more tests to help me figure out what type I have. She's out of the country for a BC convention now, but I'll tell her my timeline and plan about china.

Btw, does anyone know when an MRI screening is appropriate for BC? I've only had an ultrasound, mammogram, and core needle biopsy.

ShetlandPony

Hello, shockedat29. I have a few thoughts and suggestions for you, but first let me say that I respect your open-mindedness and your desire to make intelligent decisions.

MRI is especially useful for women with dense breasts, since density can hide tumors on mammogram. Dense breasts are common in young women, so I would ask the radiologist if that is the case for you. MRI may be recommended to make sure there are no other suspicious areas.

As far as waiting a month for (possible) surgery, in your position, I would have a conversation with my oncologist about how safe waiting would be in my particular case. I believe it really depends on the patient and the characteristics of her cancer. On one end, an elderly woman with a grade 1, slow-growing tumor that is ER+ PR+ Her2 negative might be advised that several weeks delay are unlikely to matter. On the other end, a young woman with a grade 3, fast-growing triple negative or Her2 positive tumor might be advised to start treatment immediately in order to limit the chance for metastasis. I agree with the poster above that getting more details, especially Her 2 status, is important, as Her2 is a faster and more aggressive type. They should do FISH and/or CISH testing to determine Her2 since the standard test came out equivocal. Breast cancer tends to be more aggressive in young women. Grade 2 is medium. If your pathology has a ki67 number, that might help also.

You could go ahead and make a surgery appointment, with the idea that you can cancel if you wish. If you wait until you come back from China, it may not be possible to get a timely appointment.

I have heard it said that western medicine is great for an acute condition that needs quick, aggressive action; and that eastern medicine excels at maintaining health over the long term. For someone who is interested in both, a useful book is Integrative Oncology by Donald Abrams and Andrew Weil. It has chapters on just about every alternative or complementary therapy, with a discussion of the evidence and the questions, and loads of references.

Remember that for any treatment one must weigh the risks and benefits. And if you choose a particular treatment, your healthy lifestyle will likely help your body to minimize side effects. So for example, if you decide to try anti-estrogen therapy, exercise and omega 3 fatty acids in your diet can mitigate joint stiffness.

I hope you are seeing docs at a major cancer center, given your age; and one with an integrative and culturally sensitive approach, given your desire to explore TCM. (PM me with where you live if you want suggestions.)

I will disclose that I do conventional treatment, to which I attribute my still being alive; and complementary strategies, to which I attribute my living well with (otherwise) good health and quality of life.

Good luck and I'd be interested in hearing more from you.

Jumpship

Shocked- I like that you are investigating. I did tradicional treatment and then accupuncture and other complementary treatments.

I'm not great with screen names but I think it's Zarovka that just came back from Japan and did the hyperthermia treatment. There's a Chinese American stage 4 that after conventional treatment is doing TCM. Maybe search for the treatments you are looking into in the bco search bar and they will come up.

ksusan

Nicely said, ShetlandPony. Thanks for the book reference--I just ordered a copy.

I also do allopathic medical treatment plus complementary treatment. For example, every day I take Tamoxifen and I also eat turmeric and ginger.

An anecdote, if it helps: I had a dear friend who had early, aggressive breast cancer. She was strongly opposed to Western treatment in general, but after a great deal of research, decided to go ahead with lumpectomy and radiation (it had been recommended that she have mastectomy, chemo, and radiation). She was still ambivalent about this, even after treatment. Her acupuncturist was friendly with the Dalai Lama's physician, who was visiting her state; a consultation was arranged. After the exam, the Dalai Lama's physician told her that it was good that she had done allopathic treatment because her BC had been beyond what could be reasonably treated by balancing her system by Chinese medical means. However, he suggested several interventions to restore balance, support wellness, and resist cancer as follow-up care. As I say, it's an anecdote, but it's been my model for my own thinking about which strategies to use when.

moth

hello OP,

I'd encourage you to read through some materials which looked at the effect of delays on treatment. This will give you a better idea of the risk and help you assess what delays are reasonable for you.

https://respectfulinsolence.com/2016/01/12/breast-...

It mentions 2 studies in the blog post & they're both open source I think so you can read the originals yourself.

Cowgirl13

Shockedat29, I think you have been given many good points of view. I clearly hear you about wanting to go to China as soon as possible for treatment. But it sounds like the urgency you feel about going may be overshadowing the need to obtain all the information relevant to your case. I think Shetland had very good points to consider. I'm glad you came to this thread for help.

illimae

Whatever you decide, we would love it if you wouldn’t mind checking back in and updating on occasion. There is a lot of interest in the topic of conventional vs alternative but the stories are all about a friend of a friend or a guy who knew a guy. We rarely get actual first person testimony.

exercise_guru

there is a very high percentage of breast cancer that is cured by surgery alone. It's important foe you to know that breast cancer can take off fast and go to the nodes. I personally would consider having a lumpectomy while it is small. Then you will have the full pathology and can decide what to do after that. I don't want to scare you but my two young friends both died frI'm BC. It tends to be aggressive in young women. For my part the cancer in my breast was small but aggressive I got it out as fast as I could.

Please update us and I wish you the very best.also research mushrooms and broccoli sprouts the research is good

shockedat29

Hi everyone,

Thank you for comments. I really appreciate everyone's concerns because I have the same concerns as well about prolonging surgery. I was dx 2/15 and my surgery is scheduled for 4/28, with the possibility of moving my surgery up.

@moth, thank you for the links to the studies. I've read articles referencing these statistics, but I haven't read the actual paper. Thank you for linking them.

@exercise_guru I will definitely research mushrooms and broccoli sprouts! I think/hope that my timeline for surgery is timely, considering I am putting it off to try something else.

@illimae Of course I will update. My purpose for starting this forum was to give a real first-hand experience of my success/failure of pursuing alternative medicine, while being mindful that it may not work and I will just have to go with the proven and effective conventional treatment.

exercise_guru

sorry writing from my phone I did think of something else that is important to km n ow abour breast cancer. I have read that the detectable cell size on a mammogram is not that small. I read a study once where they shrunk a tumor in mice using fasting. Then once they fed the mouse the tumor grew very fast. So while I am crossing fingers for you that any treatments might work make sure you keep up with screening.

Also before you go to China I would get a full consult to ask if the tumor has a blood supply and make sure you are confident that they believe the lymph nodes are clean

shockedat29

Hi everyone,

So it's day 5 here in China. We've been doing a mixture of acupuncture and moxibustion. I want to say that my tumor felt tubular shaped before but now it feels like a sphere. Idk, I might be imagining it, but we'll really know when I go back to the states to get new imaging.

I requested a FISH test from my surgeon. The test also came back equivocal.

The acupuncturist also worked on my back because I've had immense back pain since high school. I'd have to say that my back feels a lot better. It's not totally healed, but I can comfortably stand up straight now. I wasn't able to before.

Surprisingly, one day we were having a meal and he was trying to assure me saying, "you'll be fine, your tumor is fine. I had cancer and I'm fine." My mom and I were like "wut?!" Apparently, he had nasal cavity cancer and he healed himself, he says.

They told me I was lacking "yang" energy, so I've been sitting on the window sill to absorb energy from the sun. I looked up what yang deficiency looks like and it's definitely me. Low energy, relaxed, sedentary, get cold easily. I mean, even when I host parties, they are really just gatherings, not "partayss." So interesting...

So we will see if this works or not. I'm still in communication with my surgeon back home so she's aware of what's going on. I know it's risky for me to delay conventional treatment, and I want to thank everyone for their concern. But here I am, taking that risk...

I'm hoping for a spontaneous remission. It happens....But will it happen to me????

ShetlandPony

I believe CISH should be ordered since FISH was equivocal

wallycat

I haven't read all the responses but here are my thoughts...

first, I am so sorry you are joining us and are so young. This cancer business really stinks.

I do not think you are crazy to incorporate alternative medicine but I would highly encourage you not to ignore and not to skip conventional medicine.

I had a horrible auto accident in my 20s with really bad neckpain. I thought I would have to live with it and I did, for years. Met a lady studying acupuncture where I used to live (WI) and she needed guinea pigs for practice. Two treatments and my neckpain disappeared. But pain is not cancer.

Conventional medicine has its place and it can allow you years and years of NED. Alternative medicine can be used together or if conventional medicine stops working. Best to you however you elect to take your journey.

shockedat29

@wallycat Hi! Thank you for your thoughts. When I get back from China, I plan to get an updated mammogram and ultrasound right away (my appointment is already booked). I've also been sending my surgeon updates and will be meeting with her after I do the imaging. So...I guess I'm not technically skipping conventional medicine, I am just trying something else before deciding to go with conventional med.

Hi everyone, so it's Day 12 here in China. On the 9th day here, I did moxibustion and the tumor seemed to move around like crazy to escape the heat. By the end of the moxibustion session, it decreased in size dramatically. I was in shock because it was shrinking so quickly! I think the moxibustion was kind of like a local hyperthermia treatment. It does get kind of scary because it can get hot. In one of my sessions, it accidentally touched me and I blistered up the next day. I think the tumor decreased by 75% since I got here. Of course the 75% is just a rough estimate, I have no imaging to prove it (yet!)

Even though there were drastic change on Day 12, I feel like there hasn't been an obvious change in the last 2-3 days, but today seems to be slightly smaller/softer.

IDK, I talked to my tumor yesterday, and I told it that I wanted it gone in 3 days! LOL hopefully it listens to me!

So a question for everyone: A tumor that feels smaller is a good sign, right?

shockedat29

@ksusan Hey, I'm just responding to your first comment now. When I got here, apparently my body has been yang (hot) deficient and I have a lot of dampness in my body. So I've been eating a lot of ginger and pretty much sun bathing my back (sun bathing is a natural way to get yang, and the back receives yang easily or something like that). Now that I think about it, back in the states, I did feel cold all the time and in the last few years I have been dealing with a lot of phlegm. Apparently, my vegetarian + seafood diet doesn't help because veggies are cold and seafood is damp. I think my body is more in harmony now, my insides don't feel cold.

I think when I get home, I might have to start incorporating some meats into my diet. It makes me sad because I do feel bad for the animals. Prior to coming to China, I was actually thinking of going full vegan. I guess that's not happening. I think a good starting ground for me would be meat based soups w/o eating the meat.

So...when I first got here, the acupuncture guy mentioned that BC is due to relationship stress or blaming yourself for things that don't go right. I don't think I blame myself for anything.....I mean, I'm always right. LOL but... I have had my fair share of relationship stresses in the past. Is this true for anyone else?

CindyNY

Prior to my dx my life was going great. Retired 3 yrs previously, purchased a 2nd home in FL to be our winter retreat. I had less stress than ever, until dx in Oct 2017. Life is still good, so I don't think I got bc because things weren't going right. Genetic make up, dense breast tissue, the luck of the draw.

I hope your alternative search works out well for you.

AliceKo

Shokedat29, sorry to hear you are dealing with it at 29. I started dealing with this at 41 and it sure seemed like I was too young for that. keep us posted. I sure hope you get your miracle! Just keep your oncologist/surgeon in the loop. I personally think that conventional medicine is not the only way to get better and it can be so invasive. I delayed my cancer treatment (3 weeks) for spiritual reasons and I asked my oncologist about it, she told me how much time she can give me. I am glad I did it that way. I did do the conventional treatment afterword, I am a modern, educated person and not going to deny all the science and it has worked and I am convinced that spiritual part was even more important.

I am doing Accupunture and craniosacral therapy right now for the post mastectomy pain syndrome that I had developed after mastectomy and sentynel node biopsy surgeries. I am hoping for a miracle or at least an improvement. What conventional medicine offered to me was very poor and invasive. Anti-depressants and anti-seizure meds that won't resolve my pain or destroying my damaged nerves all together. so I am trying the alternative road, my oncologist encouraged that.

CindyNY

Any updates? I'm wondering how you're doing. Hope all is well.

shockedat29

Hi CindyNY,

Thanks for checking in and for asking for an update. I'm still in China and I'll be here until 4/12. To be honest, I really can't wait to leave. I really miss American mannerisms. TBH, it hasn't really been very enjoyable here these last few days. I want to go home. I'm trying to be as positive as I can be though to maintain my mental wellbeing. **6 more days!

But I'm sure you were asking about the progress of my health...lol

Well, a couple days ago (on April 2), I couldn't feel the lump anymore. But as I feel all around just to make sure, I feel another tiny lump close to the original lump. This tiny lump doesn't feel like the tumor did, and I have a bunch of these lumps all over that same breast. So, I'm not really sure, but it makes me nervous. Also, in addition to the IDC, I also have DCIS. Since I don't really know where the DCIS is or if the texture of it is different than my normal breast cells, it makes me nervous that the cancer might not really be gone. I don't know, I really want the best news when I come back to see my surgeon, but I don't want to get my hopes up. I'm anxiously and nervously awaiting my follow-up appt on April 20th