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Topic: Am I crazy for trying an alternative treatment?

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Mar 6, 2018 07:25PM - edited Apr 7, 2018 08:43AM by shockedat29

shockedat29 wrote:

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....

Dx 2/9/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+
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Apr 29, 2018 04:28PM Whirlaway wrote:

You could try to add a tiny amount of cranberry juice (unsweetened) to the tea. Maybe this will make it more drinkable. It is not the worst tea I ever drank. During chemo I drank slippery elm tea for my stomach and soothing my esophagus. It tasted as it sounds Loopy but it helped me a lot, didn't interfere with my chemo and it works well with digestive problems as well as sore throat (in dogs too - they seem to like it, ditto with dandelion)

What about trying Turkey tail supplements? It is said they help with blood  counts. I used this and acupuncture! I actually did 13 rounds of aggressive chemo with normal blood counts which surprised everyone and I credit the turkey tail and acupuncture. I always had a healthy life style before diagnosis which must have helped a bit.

Obviously you have to check with your onco. During treatment I had a naturapthic doctor and pharmacist at cancer center checking everything to make sure nothing interferes. I have to admit I never asked my onco because and we each have to do what we believe in. As triple negative I really could not turn down chemo but it was important to me doing it with a holistic regime. 

I also use probiotics - helps with the immune system/digestion (but I stopped that and the turmeric several days before and and after chemo). 

Good luck!



Dx 7/2016, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 8/31/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/19/2016 AC + T (Taxol) Radiation Therapy 4/3/2017 Whole-breast: Breast
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Apr 30, 2018 09:10AM Kirat11 wrote:

I have never heard of turkey tail supplements, you know I will be looking in to it now, I have been on the fence with acupuncture, I do believe it has a lot of benefits, my husband had great results with back pains when he was in China, will definitely check on that as well, anything really that is holistic, my oncologist is on board.

I appreciate everyone here, love all stories and ideas.

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Apr 30, 2018 10:20AM - edited May 4, 2018 05:13PM by Whirlaway

turkey tail or Coriolis. If you search the board here, there are already several threads. That's how I found it and then my Naturopath wanted me on it too. I think they use it in Japan with chemo as standard care.

I had a bad reaction to anti-nausea meds so had to do dose dense A/C chemo without it which was brutal but going to acupuncture twice a week helped me getting through it. Nurses said to me, keep doing what your are doing!

Wishing you the best!


Dx 7/2016, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 8/31/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/19/2016 AC + T (Taxol) Radiation Therapy 4/3/2017 Whole-breast: Breast
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May 1, 2018 09:52PM AliceKo wrote:

enerva, yes I too would like to wake up from this nightmare. We can't regulate body pH with soda. It's much more complex than that. We can drink more water, but that's about it

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May 4, 2018 03:33PM Kirat11 wrote:

Whirlaway

I ordered the Turkey tails and got it the other day, I'm hopeful and will definitely find out it's effectiveness on my next lab draw but I'm quite happy that I think it helped me sleep for 7 hours straight for the first time without taking Benadryl and I don't know if it's just me being too optimistic but I think it's also alleviating my joint pains!.

I appreciate this idea greatly.

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May 4, 2018 04:48PM Whirlaway wrote:

Kirat11, I am so glad to hear you slept well!

I am no expert on supplements but my naturopath wanted me to take the Turkey tail during all my treatments (which I did) and then I weaned myself off the following month. On my bottle it said not to take it more than 9 months which was exactly the time I needed it. I think it is a good idea to take a break from supplements but I have met other cancer patients who just take it all the time.

As for the sleeping you could always try CBD oil. I am in Canada and just recently got my prescription for it. It is anti-inflammatory and it helps me sleep! Since I had a large tumor near the under arm I had heavy rads. Unfortunately one lymph node got chronically inflamed and my surgeon wants to take it out as it keeps pushing on a nerve but my onco disagrees. So far the CBD really helped - I used to wake up 7 times from pain and my sleep quality and time improved big time! Not perfect but so much better!

I also take 10 mg Melatonin at bed time. The CBD kicks in about 1+ h and the Melatonin makes me fall asleep quickly along with a few minutes of mediation and ocean sound waves.

Fingers crossed for your labs!!


Dx 7/2016, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 8/31/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/19/2016 AC + T (Taxol) Radiation Therapy 4/3/2017 Whole-breast: Breast
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May 5, 2018 08:53AM dtad wrote:

Whirlaway...may I ask what kind of CBD oil and where did you get it? Does it have any THC in it?

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 5, 2018 02:21PM Whirlaway wrote:

dtad, I am in Canada and it is by prescription only. It is prescribed by my cancer pain clinic and I buy it online. If you are in Canada you can pm me and I can give you the company's name. I am only allowed to buy it from one source.

The CBD is 1:20 - in 0.5 ml there are 10 mg CBD and 0.5 mg THC (almost all CBD). I am very sensitive to the plant which is not a bad thing as it allows me to get benefits from a small dose as the oil is expensive. It is organic.

Dx 7/2016, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 8/31/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/19/2016 AC + T (Taxol) Radiation Therapy 4/3/2017 Whole-breast: Breast
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May 6, 2018 08:24AM dtad wrote:

Thanks so much!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 13, 2018 12:25AM exercise_guru wrote:

Would you need a lumpectomy or a mastectomy?

The surgery will likely not as bad as you think it is. The imagining is the worst.


Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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May 13, 2018 05:17PM Carol_U wrote:

Hi... Your post was so positive, thorough and reassuring, thank you. Would love to know how you went in China.

I was diagnosed DCIS 3 months ago and have been trying just about all alternatives (proactive and reactive) simultaneously. I have cancelled surgery 3 times, as I have a lot of confidence I can beat this responsibly and naturally. I too am health nut and vegetarian all my life (I've never even had a McDonald's meal). So the Western medicine way seems barbaric and totally against everything I believe in.

I'm really keen to hear the long story of how you are going in your quest to stay healthy and avoid chemicals etc..

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May 13, 2018 07:07PM shockedat29 wrote:

Hi Carol,

I'm going to pm you. I haven't really updated here because this journey can be an emotional rollercoaster.

I had a sonocine ultrasound a few days ago, which is able to see through dense breast tissue better than mammograms and ultrasounds. The Dr said that the area where the lump was doesn't even look like cancer, but there is something there. But the area where I have dcis looks like I have invasive cells there too.

OK, I will pm you.

Dx 2/9/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+

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