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Delayed surgery, 8.6cm growing very fast, not sure what to do

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  • jessie123
    jessie123 Member Posts: 134
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    Hi ed111 ---That is great that your extension is gone -- it must have been nothing like mine turned out to be. What about your 1.3cm IDC -- is it also gone? What kind of test did you have -- another MRI or a biopsy? I'm really happy for you!

  • ed111
    ed111 Member Posts: 54
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    hi jessie123 , I asked the same question, maybe it was not cancer? Surgeon said, no, we think it was cancer, there are MRI specifics that is pertinent to cancer and not inflammation... But anyways, yes, all is gone but bed.

    ''History of locally advanced breast cancer with ductal and lobular features treated with hormonal therapy. There is minimal residual enhancement in the tumor bed measuring approximately 17 x 2 mm. Since the prior examination the nipple retraction has resolved.'' 2mm is bed, essentially. Giving it a hard look and a second opinion with NP MO: if 8.6x4cm could go away naturally, could maybe these 17x2mm also go away under the same protocol, without intervention? )

    How you are doing?

  • meow13
    meow13 Member Posts: 1,363
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    Very interesting and exciting ed111!

  • ed111
    ed111 Member Posts: 54
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    thank you, Meow13 ! pleasantly surprised myself. a combination of things: high doses vit C infusions, diet, supplements, juices (a lot), two months on Arimidex (dropped cause of side effects). also did lots of bloodwork for inflammation and tumor markers with functional Dr, and will continue doing so, along with ultrasound for monitoring.

  • jessie123
    jessie123 Member Posts: 134
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    Was that what your doctor wrote to the second opinion doctor? He's giving the AI credit, but you only used the drug 2 months. This is so interesting. I have my checkup post surgery MRI in December --- not looking forward to that.

  • moth
    moth Member Posts: 3,293
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    ed111, I'm curious - was that tumor ever biopsied?

  • mac5
    mac5 Member Posts: 85
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    ed111

    I'm going through a recurrence of a different type.

    I call it recurrence because it's another BC in the other breast. I will have Chemo before Mastectomy. But it's 10/14 and I was diagnosed on 9/25. My tumor is 73 mm x 70 m x 72 mm. It's freaking huge to me. And the chest muscles lit up on the Breast MRI. The MO doesn't seem concerned but I want it out of me.

    My first time was MD Anderson so I'm accustomed to personal care. Now, not so much.

    You are right. You have to educate and vocalize! Stand up for yourself. You know your body better than anyone else

  • ed111
    ed111 Member Posts: 54
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    moth -- yes, core tumor in February 2019, invasive ductal carcinoma with lobular features, grade 2-3, ++/-.

    Now the 8.6x3.4cm elongation from it was not, but they say it lit on MRI exact the same as core tumor, so they have no doubt it was cancer.

  • jessie123
    jessie123 Member Posts: 134
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    My 7.5 cm elongation also showed up on MRI as the tumor did, but turned out after surgery to be nothing. MRI's are known for false positives.

  • ed111
    ed111 Member Posts: 54
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    mac5 -- whatever you do, make sure you find and include Naturopath MO in your team. Not just naturopath, but NMO. Ask them to manage your overall care. Ask to do blood tests for inflammation markers, natural killer cells, proteins, tumor markers, vitamins, methylation, enzymes etc. They are able to run all these tests through insurance. Decreasing inflammation in your body is a key for successful treatment.

    You have a big size. Lit muscle is a concern. I know the feeling when you work with impersonal Drs, you know you have an emergency and feeling against the wall.

    Several steps that, to me, were/are essential

    1. Riordan protocol, that's what I did while waiting, and that what shrank my tumor 50% within weeks initially. High dozes vit C protocol could be done as fast as 3 weeks. You would need to find a functional medicine center that does it https://riordanclinic.org/research-study/vitamin-c-research-ivc-protocol/ (they may call it differently, it's OK), 12-13 IVs. from 25 to 100 mg, bringing C blood level to 300+. For me it worked like chemo without chemo.

    Even if you do chemo, high dozes of vit C are now approved to alleviate chemo SE and boost results.

    2. This woman https://www.facebook.com/jane.mclelland.1

    and her book which remains #1 on Amazon https://www.amazon.com/How-Starve-Cancer-Jane-McLelland/dp/0951951734/

    There is now the UK based medical center that is based off her research, they take patients everywhere https://careoncology.com/faq/

    I use only a couple of NSAID and glucose blocking drugs/supplements from her list, but would go for all if my cancer returns.

    3. Supplements. It has to be a cocktail specific to cancer.

    4. Juicing. I do 5lb of carrots plus some beets and celery every other day.

    5. Total exclusion of starch, baked goods, bread, pasta, bringing processed carbs to an absolute minimum.

    6. Everything organic.

    7. Stress=cortisol. Whatever can bring stress down: nature https://neurosciencenews.com/nature-cortisol-stress-11001/, meditation groups, travel, extra sleep, activities, withdrawal from conflict situations, whatever it takes to avoid stress.

    Keep this in mind: https://www.wbur.org/commonhealth/2018/04/11/breast-cancer-surgery-spread and make sure you have NSAIDs in your body.

    I found that it's easier to get your surgical/MO team onboard when you already became a patient of Functional MO, and you come to them with your list of supplements and protocols signed off by a Functional MD.

    To me, it was important to avoid a patient and "cancer survivor" mentality. I decided that cancer will not define me. It's a serious chronic condition, and I have a choice and a decisive voice in how I want to approach it. I trained myself not to be shy to ask for 3d, 4d and more opinions. I learnt to change doctors if I felt uncomfortable. I insisted on my first MRI, and did my own second MRI when they said I don't need it (it changed everything). I raced against the clock and got vit C protocol done, though none of my conventional med team wanted to hear about it.

    I felt tired and despaired more than once, and wanted to give up: after all, I have my insurance, it's doctors' job to treat me, I don't want to manage it, it's too much... and then I got back up and researched yet more, and found yet another functional medicine Dr who refined my supplements list (I have three integrative medicine MDs I consult, and one NMO), and sent them yet more latest research articles that made them to advice another test and another supplement... and we made it. I hope it helps a little... Thinking of you, please send me pm if you feel like.

  • ed111
    ed111 Member Posts: 54
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    jessie123 -- could be either. They're convinced it was the same type as the core tumor. trust me, it was a sight not for the faint of the heart. My left breast was twice as large as the right one, hurt like crazy and was growing in front of my eyes, nipple looked as a dent. In any case, all is gone now )

  • jessie123
    jessie123 Member Posts: 134
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    Your extension does sound different than mine -- couldn't feel it and didn't show up on ultrasound -- just MRI. How often will you being having MRI's as follow up? That's the worst part of having a lumpectomy. Will you be continuing the supplements forever or will you be able to stop some of them now that the cancer is gone? Is there a preferred test for inflammation -- I had a blood test for inflammation 2 years ago and mine was normal -- but maybe it wasn't a good test. You give us hope (-:

  • ed111
    ed111 Member Posts: 54
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    Hi jessie123 -- I had first MRI in March, after diagnosis. I had to fight for that one, they said "not needed", and it showed 8.6cm. I've observed my tumor crazy growth in front of my eyes, started high doses vit C, and observed it shrinking as fast in front of my eyes. But surgery was already scheduled and planned based on 1st MRI 8.6cm.

    I came to them and said I see it's shrinking and less inverted. They said, it cannot be. I asked for another MRI, they said no way, nothing can change in one month. I found a place where MRI costs $900 (vs $3500) and did it myself. That was the 2nd MRI that showed 8.6cm shrank to 3-4cm. They said, it cannot be, it must be "machine difference", but they cancelled the surgery and offered Arimidex.

    I saw Drs with planned visits throughout the summer, they appreciated breast returning to perfectly normal. In October, two weeks ago, I had my 3d MRI, which showed cancer gone and remaining "residual bed".

    So that's to answer your question about MRI history. I feel, every six months will be about right for now, if I don't see or feel any changes.

    Supplements -- yes, for life. It's such a little price to pay for staying healthy. Juicing is also for life. I treat cancer as a chronic condition even if it's seemingly gone. Also vit C maintenance infusions, I do 75+100mg at least once a month, or biweekly, depending on my finances )

    Tests I had included methylation, c-reactive protein, alpha fetorpotein / tumor markers, CA-27-29, CA-125, omega-3, interleukin, natural killer cells, bunch of vitamins etc. These also good to be repeated every six months, I think.

    Finding a good Functional MD specializing in oncology is a key. But I do my own research all the time and keep an eye open for all the latest studies. If I have a recurrence, I will go to that UK clinic.


  • jessie123
    jessie123 Member Posts: 134
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    Somehow, I'm willing to bet that Alabama has no functional MD's specializing in Oncology. What is a functional MD? I'll look it up -- now very curious. Also, I read some years ago that high doses of vitamin C increase lung cancer risk. Do you know if that is true?

  • ed111
    ed111 Member Posts: 54
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    jessie123 -- haven't heard of vit C linked to lung cancer, but the very first google on "vit C and lung cancer" brought this:

    https://www.cancer.gov/about-cancer/treatment/cam/hp/vitamin-c-pdq

    nothing but improvement, reported even by official conventional sources. Vit C is now formally approved to administer along with chemo to alleviate SE and boost chemo effectiveness. It is not officially approved as a standalone treatment for cancer, but people do it, myself included, with successful results.

    Funny but Alabama may have more integrative/functional MDs than MA )

    MA is very restrictive against all alternative practices, so we have few MDs who integrate naturopathic approach practicing here, but south-mid states have less restrictions. One example on quick search https://www.uabmedicine.org/integrative-medicine

    I see that oncology DRs there were trained with Arizona Center for Integrative Medicine, which is excellent.

    But you can search for integrative MD Alabama and Functional MD Alabama and get more results.

    A few cautions on high doses vit C: tolerance test must be done for a dose higher than 25mg. In very rare cases some people have genetic intolerance to high serum levels of vit C, any good Functional MD knows it and will do blood test. Advanced cancer that affected kidneys, obviously, high doses C could be lethal if kidneys no longer function (creatinine test). Advanced metastatic cancer with large tumors -- high doses vit C cause rapid apoptosis, large amount of released toxins could be dangerous.

  • marijen
    marijen Member Posts: 2,181
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    Ed111, would you mind listing the supplements you take and how much? Thanks.


  • ed111
    ed111 Member Posts: 54
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    marijen -- sure, this is for informational purposes only. This is not a health advice. List should be refined by your integrative/functional Dr who knows your history. It's very individual. Supplements that help one type of cancer could be harmful with another. Good integrative dr looks at metabolic pathways and keeps an eye on all the latest studies.

    Morning:

    440ml of clean delivered water (never tap, never store bottles) with lemon juice and apple vinegar + ½ spoon of baking soda

    Turmeric w/bioperinr 1500mg x1

    Magnesium (chelate buffered TRAACS) 72mg x1

    Vit E 1000IU x 1

    Omega 3 2000mg x 1

    Ashwagandha w/black pepper 1300mg x 2

    Beta-Glucans 250mg x 2

    Turkey Tail Mushroom 1000mg x 2

    Chaga+Reishi 440mg x 1

    Gluthatione 500mg x 1

    IP-6 & Inositol (for natural killer cells) 800/220mg x 2

    Green tea extract 725mg x 1

    Alpha Lipoic Acid 600mg x 1

    Vit D-3 5000IU x 1

    Garlic 1000mg x 2

    Thyroid Support complex by '1 Body' x 1


    Before bed:

    440ml of water with lemon juice, apple vinegar, ½ teaspoon of backing soda

    Niacin 500mg x 1

    Vit B complex (all 8 B-vit) x 1

    Metyl Folate 1000mg x 1

    Vitamin K-2 100mg x 1

    Berberine 1200mg x 2 (or 1) – trying to take earlier after food

    Vit D 1000mg x 2

    Chaga+Reishi 440mg x 2

    Turmeric w/bioperinr 1500mg x 2

    Magnesium (chelate buffered TRAACS) 72mg x1

    Melatonin 10mg x 2

    Licorice Root 450mg x 1

    Liposomal Vit C 1400mg x 2

    Aspirin 80mg x 1

    Dipyridamole 75mg x 1


    Tis how my morning looks like ). It may seem intimidating, but once you get into a routine, it is not. Takes few minutes filled with gratitude that this is ALL I need to do to keep my body healthy

    image

    I do monthly, or more often finances permitting, vit C IV maintenance 50mg+75mg+100mg.

    Juicing : carrots+beets+celery continuosly to ensure at least 860ml per day.

    Essential oils externally:

    Frankincense from Miracle Botanicals only

    Rosemary (best from Whole Foods)

    Palo Santo from Miracle Botanicals only

    Lavender

  • marijen
    marijen Member Posts: 2,181
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    Thanks for the list ED111. It’s way more supplements than I imagined, some I don’t recognize although I do take a lot. You have to be very disciplined to do all that every day. I love your story. Does your functional Dr. Have any other success stories like yours? You must have shocked the hell out of that large tumor!


  • ed111
    ed111 Member Posts: 54
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    Update, 9 months after initial biopsy, 7 months after 8.6cm measurement -- nothing. Latest ultrasound 'normal, benign'.

    I remember looking at it then, and choosing post-mx bras and camisoles, and thinking how am I going to hide drainage packs for my work meetings.

    Riordan protocol + supplements + juices. Cancer dissolved. My MO agreed that I don't need a surgery, cuz there is nothing to remove. She just wants me to do US every three months for now, and continue doing what I'm doing for life.


  • marijen
    marijen Member Posts: 2,181
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    That’s just awesome ed111! I saved your list for reference. I’m a supplement believer. Thanks for the update. You have avoided so much pain and grief from BC treatment.


  • ed111
    ed111 Member Posts: 54
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    Thank you marijen ! it was not even that difficult. It just happened cuz I decided to try. Riordan did it, with all other supportive means.

  • marijen
    marijen Member Posts: 2,181
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    ed111, do you intend to get future screening? Just curious. Please keep us updated. Happy Thanksgiving.


  • ed111
    ed111 Member Posts: 54
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    Happy Thanksgiving marijen, and everyone!

    Latest US October 25 -- normal, ned.

    Next US end of December. Yes, my MO wants me to have US every 3 months for now, and I will do blood tests every 3-4 months for markers and inflammation. Will keep posted for sure Heart


  • alicebastable
    alicebastable Member Posts: 1,945
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    If you never had a biopsy, you don't know that you had cancer. It may have been a non-cancerous inflammation.

  • ed111
    ed111 Member Posts: 54
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    AliceBastable -- not sure what you base your statement on. I had a biopsy, that's how I got my diagnosis. it's in the beginning of this tread.

  • alicebastable
    alicebastable Member Posts: 1,945
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    Oh, sorry, the word "biopsy" went onto the next line of your post and I missed it. At least shrinking beats the heck out of growing!

  • marijen
    marijen Member Posts: 2,181
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    Alice, it more than shrank, it’s gone!

  • Chumbawamba
    Chumbawamba Member Posts: 2
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    ED111, Thank you SO VERY MUCH for all of the time, patience and effort you invested in this very detailed discussion over many months! I stumbled upon it during a search a few hours ago and ended up reading every single post, copying and pasting many of your replies. Too many of us have been unsuccessful at finding a good MD naturopathic oncologist, so your detailed replies are much appreciated! Best wishes for a lifetime of negative scans