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I Did It...No Further Conventional Treatment

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  • heartjoy
    heartjoy Member Posts: 3
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    I was diagnosed with Stage II invasive breast cancer in March 2013, diagnosed via mammography, biopsy, and MRI. Two tumors, one lobular and one ductile, both hormone related (ie, the old lady variety--I was 63 at the time). I wish now I hadn't given permission for markers to be injected into the tumors, but I can live with that. I decided to treat these tumors 100% with Chinese medicine, but I follow my progress with an annual MRI and two ultrasound scans every 4 months between MRIs. The surgeon I had met with last year is my liason with the biomedical cancer center, and she's been impressively supportive. I get acupuncture weekly, drink Chinese herbal teas 3 times a day, follow a Daoist healing diet, do guolin qigong daily (theoretically--I'm not that in to exercise, I'm embarrassed to admit), and take detox baths (dry skin brushing followed by a long soak in the tub filled with very hot water and a mixture of Dead Sea salts, epsom salts, and baking soda) most days. So far, so good. I've never felt better in my life! It took a while to get all my family on board with this, but now everyone's fear has calmed down and we're all managing pretty well. I'm documenting all these experiences in a blog: www.theheartofchinesemedicine.net.

  • jojo68
    jojo68 Member Posts: 336
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    Very interesting, heartjoy!  I am doing Chinese herbal medicine as well and my estrogen has been balanced better than ever.  But, I am on the fence about scans etc...My Chinese doctor says I don't need scans every year, just bloodwork.  I am a bit nervous about this.  How are you able to get the insurance companies to cover a yearly MRI?

  • heartjoy
    heartjoy Member Posts: 3
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    Hi jojo68! Good for you for choosing Chinese herbal medicine. I guess my insurance pays for the MRIs because annual followup MRI's are part of our local cancer center's protocol. The surgeon I've seen there is curious about how well Chinese medicine works for tumors (she has an uncommonly open mind) and orders the various scans for me. I'm trying to document the efficacy of my treatments, so I use the periodic "look-sees" to monitor the tumors' sizes (nothing measures tumor density or internal activity, though).


    A skilled acupuncturist/herbalist may not need the feedback from scans. Our tongues and pulses, to a highly trained and sensitive practitioner, provide a lot of information. Even if your Chinese herbalist has good diagnostic skills, if you feel the need for further information about the progress of your treatments, you need to honor that concern, to quiet your doubts.


    If you were receiving conventional biomedical treatments--surgery, radiation, chemo--I bet your insurance company would cover periodic MRIs to determine if the cancer is returning. So why shouldn't they cover them when you go another route--you're saving them probably at least $100,000! I'm wishing the best for you.

  • jojo68
    jojo68 Member Posts: 336
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    I know it makes sense and would save money for the insurance companies...but, they never seem to look at the long run do they?  Always the short term when saving moula.  I have not decided which way to go as far as monitoring.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
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    Glad to hear your success with Chinese medicine, heartjoy! I love your blog. I believe in cellular memory and am fully convinced stress is what cause my cancer.

    jojo68 - The insurance company isn't covering an MRI? I have my first one post surgery in December. Hmm. I better double check. 

  • jojo68
    jojo68 Member Posts: 336
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    Hi Globalgirl!

    I totally believe in the stress factor as well!  I taught in a horrible inner city school district situation for ten years, was in an abusive relationship and so on and so on...I wear my heart on my sleeve, which I know can be detrimental.

    I have not followed up with my onc since my surgery 6 months ago, so not sure what would be recommended and/or covered...I will check into it.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
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    I subbed in a "low performing" school district for two years. That wasn't fun.  Yeah definitely look into the MRI.  He wanted me to have the MRI because of my "very dense" breasts. 

  • jojo68
    jojo68 Member Posts: 336
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    Hmmm...Since I have no 'breasts' I wonder if they would probably just recommend scans which freaks me out due to radiation.

  • Momine
    Momine Member Posts: 2,845
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    Jojo, at least get a careful ultrasound of the whole area, new boobs and lymph nodes.

  • jojo68
    jojo68 Member Posts: 336
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    Momine...I guess I need to find an Onc who will work with me on these checkups eventhough I didn't do chemo or Tamoxifen etc...The Onc I had after surgery is over 2 hours away and would like someone who is closer for convenience.

    So, what is typical for you gals who did most conv treatment?  Do they do ultrasounds of the new breasts etc?  Pet scans?  What do u do Momine?  Like I said, my Chinese doc is confident I only need bloodwork...not even tumor markers as he says they are unreliable....sigh...what to do.

  • jojo68
    jojo68 Member Posts: 336
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    Also, Momine...I would think ultrasound of breast area would not be enough?  isn't the cancer more likely to spread beyond the breast?  Sorry for my limited basic knowledge...I read so much alternative stuff and haven't gone through the conventional stuff, so basically a little blinded.  I guess ILC does have a tendency to spread to chest wall and would only be found from ultrasound?  problem is, ultrasound had a hard time finding my initial tumors!  Only MRI found them.

  • Momine
    Momine Member Posts: 2,845
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    Jojo, I suggested U/S because it is the least invasive, but an MRI with contrast would certainly be better.


    I am just saying that if you don't want the invasion of the MRI, then a U/S would be better than nothing. My own attitude is that in the end I have to decide what I am comfortable with, regardless of what my docs do or do not recommend. So far we have been in sync, but if that changes, I will speak up.


    Your GP or gyn should be able to order the scans, if you decide you want to go that route.


    My follow-up is as follows:


    1. Full blood panel with TMs 3-4 times a year. My docs are not crazy about the TMs either, but they figure it could be helpful, so why not. We all take the TMs with a grain of salt.


    2. A careful physical exam at each visit, with all the lymph nodes being groped at length.


    3. Each of the first two years I had a CT of head, chest and upper and lower abdomen, as well as a separate scan for bone mets. I had the same scans prior to starting treatment, so I have had 3 sets in all.


    4. If I continue to feel well and have good blood work, we will drop down to an annual liver U/S and a chest X-ray.


    I would urge you to find an onc you like just to have a consultation where you can discuss your situation.


    Because you did not do rads, you are at greater risk also for local recurrence in the lymph nodes, chest wall or new boobs (having spread from skin or chest wall), which is why a U/S might be useful.

  • jojo68
    jojo68 Member Posts: 336
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    Thanks so much, Momine!  That was very helpful!

  • jojo68
    jojo68 Member Posts: 336
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    So, a recurrence can happen in the new tissue in my new boobs from Diep?

  • Momine
    Momine Member Posts: 2,845
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    Jojo, you are very welcome. A recurrence in the transplanted tissue is possible, although it is VERY rare, the greater danger is a local recurrence, chest wall or lymph nodes. But you really ought to discuss this with a trained oncologist, I have no way of knowing what the odds are or the best way to keep an eye on things.

  • Momine
    Momine Member Posts: 2,845
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    Jojo, how many times did you meet with your original onc?

  • jojo68
    jojo68 Member Posts: 336
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    I met once with my original and then three times with my MO after surgery.  I brought up to her my concerns about ILC tendency to met to the stomach and she downplayed it.  Goes against everything I am reading, though.  What kinds of scans do they do for stomach?  I am going to find someone to monitor me.

  • Shira
    Shira Member Posts: 9
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    Thank you Jojo and GlobalyGirl and everyone who helped along the way...I have now joined the no more conventional treatment crew! Dealing with worried family and friends was tough, but once I actually decided, they seemed to get it and stopped pressuring me, at least for now anyway!


    I had two lumpectomies (dirty margins 1st time and big clear margins and no additional cells the second) and two node surgeries (no Sentinel Nodes found the 1st time so Axillary Node the second, all clear but already seeing PT for possible early LE).


    I was going back and forth about radiation for a long time, made it as far as the CT scan and tattoo appointment (had no idea a CT scan was part of it or I would have held it off for another week) and then last week I cancelled the actual appointments. For Tamoxifen, the Onc called in the prescription, but I never picked it up.


    Have seen three holistic types/docs and settled on one for now. I am taking lots of things, and completely overhauled my diet (and GlobalyGirl, I will try that test you listed from Mercola, thanks!). I am also still researching, reading and talking to people, and have been finding pockets of people who have gone alternate routes or know people who have, so that is helping as well.


    As a side note, this feels right for me, but I am not suggesting it is the right path for anyone else!


    Also, GlobalyGirl, I read some of your blogs, and they are great! Your reasoning and they ways you portrayed your doctors sound a bit like how I was thinking while I was going through everything, although you are much funnier :-)


    Thanks, Shira

  • Momine
    Momine Member Posts: 2,845
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    Jojo, as far as I know, the mets profile of ILC is not hugely different, but it does sometimes metastasize to the lining of the abdomen. The way they monitor for that is to look for ascites - accumulations of fluid. For me that is done via CT-scan. The report specifically stated, among other things, that no ascites were found. I don't know if other types of scans can accomplish the same thing. That would certainly be something to ask a doctor.


    I think it is a great idea for you to find an oncologist who can help you with questions and follow-up. You should be able to google the name of your town together with 'oncologist' and start from there. Probably also a good idea to ask other cancer patients in your area (maybe find a local support group for BC) which doc they like.


    I am curious, by the way, and just disregard if it is too personal, but at which point in the process did you have the DIEP, and who, of your cancer docs, signed off on that?

  • Momine
    Momine Member Posts: 2,845
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    Shira, congrats on getting clean margins, even if it took more than one try.

  • jojo68
    jojo68 Member Posts: 336
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    I thought I had read that CT scans were not efficient in picking up stomach mets? 

    I had a very bad experience with MO and BS at my local hospital after diagnosis so decided to go to bigger hospital for second opinion...UPENN in Philly and LOVED it there!  They did not hassle me for offering my opinions/concerns and listened patiently to my ten zillion questions.  I had all of the scans at my local hospital sent to UPENN and met with an MO and BS there.  I never had ruled out mastectomy as I do feel that getting rid of the tumor load is best for the body...less burden.  I just had always believed that if I got my immune system up to par after surgery then I could fight off any roaming cells....which is why I chose Dr. Wong.

    Also, sounds a bit vain...but when the BS explained the whole DIEP...tummy tuck...perky boob thing...my ears kinda perked up.  LOL

  • Momine
    Momine Member Posts: 2,845
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    Jojo, no scanning method is fool-proof. There are limitations with all of them. Stomach mets are a small percentage of mets. Most mets, ILC or IDC, are in liver, lung and bone.


    Did they do your DIEP in the same surgery as the BMX? When they did the DIEP, were they aware that you did not plan to do any further treatment? What kind of scans did you have in connection with DX?

  • jojo68
    jojo68 Member Posts: 336
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    Yep...DIEP same time as BMX and nipple construction...whamo... all at once!  I was one debilitated puppy.  My hubby took off 5 weeks to take care of me, the kids and run my inhome daycare!  We rented a hospital bed for the LR which I highly recommend to all!  I had 6 drains for 4 weeks...ugh, hated those darn things.  They were well aware of my stance on chemo/rads but I was on the fence about Tamoxifen....Tamoxifen, or an Ooph were what they felt was most important...they felt I would only have an 8% benefit from chemo/rads.  Scans at DX were CT scan, Bone scan along w/ MRI, ultrasound and biopsies.

  • jojo68
    jojo68 Member Posts: 336
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    Momine...someone made this comment about scans on another post on BCO and others say their oncs agree...thoughts?

    "ASCO doesn't recommend scans without symptoms because A. scans can't detect mets until they grow to a certain size so a clean scan may or may not be accurate, and B. finding mets early does not change the outcome. There's more danger from radiation and possibly, unnecessary biopsies if scans were routine. "

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
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    jojo,


    I'm going to jump in here and say that the statement is generally true. However, some oncs do not follow it to the letter either because they are not on board with it or because patients insist on scans. The counter intuitive part is that early discovery of mets does not increase survival time. It's hard for most of us to get our heads around this as logic dictates that finding it early is better. My met was found early and quite by accident. I would like to think that it will increase my survival time but history says otherwise. I can still hope to be an outlier!


    Caryn

  • Momine
    Momine Member Posts: 2,845
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    Jojo, ok, but that means you have a set of scans for comparison in future. I am surprised by the low percentage they gave you for chemo/rads advantage, but since I do not know the details, I have no way of commenting.


    The statement is the recommendation by ASCO. However, it is a general recommendation for all early stagers, 1-3. In my case, I had the careful follow-up, because with a stage 3B cancer there is a good chance it is really a stage VI, but where the mets are too small to detect at DX. ALso, early detection may not improve survival (although I am not 100% convinced of that), but I suspect it may improve COL to wrestle mets down earlier rather than later.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
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    Awww Shira what a nice compliment. I'm glad that you made the decision that was right for you. There is an alternative medicine Yahoo! group that I belong to - "cancercured." There are some very knowledgeable people on there, and they are very nice. I'm glad that you said you're not suggesting that it's the right path for anyone else. We're all different. And all of us need support with our treatment decisions. It's part of what will help us through this terrible disease.


    Big hugs!

  • Mardibra
    Mardibra Member Posts: 194
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    My onc doesn't do any further scans without symptoms. I'm sure she would if I asked but I'm ok with no scans for now.

  • jojo68
    jojo68 Member Posts: 336
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    Momine...Did you have one solid 5cm ILC tumor or was it a combo of tumors?  Initially, they thought I had one 5cm, but I ended up having two...3cm and 2cm...for a total of 5cm.  I am just asking as I was staged as 2b/3a and surprised you are considered 3b?

  • Momine
    Momine Member Posts: 2,845
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    Jojo, we don't know exactly, since my tumor was shrunk down to almost nothing (by chemo) at surgery time, but as far as I know it was one large tumor. It was also probably larger than 5CM, but it measured differently on each of the scans. However, the "B" is not from the tumor size, it is from the fact that it had invaded the skin. That makes the tumor T4. I had 7 nodes at surgery time, so that is N2, but at least no signs of mets. Knock wood!