My Daily Struggle with Chemo vs Natural Treatment

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carebear36
carebear36 Member Posts: 7

My dearest Tri-Neg sisters.

I've been doing tons of reading and research.  I was dx on 8/14 with Stage I Grade 3 Tri Neg 1.5cm.  On September 23rd, I chose to do a radical bilateral mastectomy.  We were very successful.  Complete removal of tumor, clean margins, nothing in the other breast, I had my Sentinal node and 2 others removed with NO sign of cancerous cells in all 3 nodes.

My Ki67 66% 

Went to my oncologist last week and they are recommending 4 months of chemo

AC every 2 weeks 4 times then TC every 2 weeks 4 times.

I've been crying because I don't understand why I should have to subject myself to this treatment when there is no spread according to my pathology report.  I've requested a PET Scan to make sure there is no other cancerous tumors in my body.

In researching, I've read that with the exception of a few specific types of cancer (mainly lukemia) that chemotherapy is basically a waste of time.  Sure, all that poison will kill you by killing all fast growing cells, but it also sets you up for future failure.  But, in my research, I can treat my cancer naturally.  There is a B-17 metabolic therapy that I can do that will do the same thing but instead of killing ALL fast growing cells, it targets cancerous cells removes the cancer cells naturally.  Plus, I'm not poisoning myself.  I'm merely giving my body what's it's been screaming for all this time.  Proper nurishment with the right fruits, veggies, vitamins, and minerals, etc.  

Because neither treatment is 100% guaranteed, I am just looking for feedback from other tri-neg sisters.  Most I'm sure have chosen chemo, but I'm looking for those that have similar situations that have chosen to go the hollistic approach and their outcome.  I don't believe that chemo is the right decision for me, but I'm wanting a little more re-assurance.

 Thank you Sisters!!

Love,

Carebear36 

Comments

  • otter
    otter Member Posts: 6,099
    edited November 2008

    Carebear, you said this:  "In researching, I've read that with the exception of a few specific types of cancer (mainly lukemia) that chemotherapy is basically a waste of time..... But, in my research, I can treat my cancer naturally.  There is a B-17 metabolic therapy that I can do that will do the same thing but instead of killing ALL fast growing cells, it targets cancerous cells removes the cancer cells naturally."

    I'm not so sure you'll find a lot of agreement here, that chemo is "basically a waste of time."  However, I am sure a lot of us--not just tri-negs--would be interested in learning about a treatment that can kill tumor cells without harming normal cells.  Please, do post details of the clinical trials where this was tested, and the research papers in which the results were reported.

    [Edited to add:  Carebear, I'm sorry if what I've written above sounds snarky.  It's just that IMHO you are making a terrible mistake by foregoing chemo in favor of a "natural" treatment, like with "B-17 metabolic therapy".  I entered your numbers into AdjuvantOnline, and it says the risk that your tumor will recur in the next 10 years if you do not have chemo is around 30%.  If you do have chemo, that risk drops down to 20%, or even as low as 14%, depending on the type of chemo you have.  That's a huge benefit, and it far exceeds the risk of serious, long-term SE's from chemo, like leukemia or heart problems.  In another post you said you are just 36 years old and you have 3 children.  Please think of your family--do you want to have explain to them 2 or 3 years from now, that one reason why you have Stage IV BC is because you declined chemo in favor of an unproven, "alternative" treatment?  Chemo is very do-able.  Please re-think this decision before you've waited too long.] 

    otter 

  • PineHouse
    PineHouse Member Posts: 416
    edited November 2008

    Carebear,

    Obviously, the decision is very personal, based on your background & beliefs, how you know your body, your research, opinions you get from close friends & family etc.

    I would just suggest asking yourself these questions:

    • If you do the chemo, and after 10 years the cancer has not recurred, would you have changed your decision now?
    • If you don't do the chemo, and after 2 years you get a recurrence, would you have changed your decision now?

    Compare the 2 thoughts and maybe it'll help you a bit.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Otter,

    Again, thanks for being the voice of reason in the wilderness. Carebear -- think of your children. Do chemo. Do radiation, if needed. Don't be silly, stupid, or short-sighted.

    Love,

    Annie

  • carebear36
    carebear36 Member Posts: 7
    edited November 2008

    I appreciated your thoughts and concerns.  What I'm looking for however, is people that have decided to chose alternative medicine instead of going the chemo route or have declinded chemo with/or without alternative medicine and what their outcome has been.

    I know all the risks (I have a 30-40% chance of recurrence within 10 years according to what the oncologist said), but she can't prove that poisoning myself will keep me free from cancer and neither the same can be said for natural medicine. 

    I'm looking for people that have chosen a different path and their outcome.  That's what I'm looking for in this post.  I understand most feel that I should do the chemo, and not decision is final at this point.

    BTW, I also do not understand why my chemo must be started within 12 weeks after surgery vs 6 months down the road.  If someone could explain that would also be helpful.

    Thank you all :o)

    Carrie

  • otter
    otter Member Posts: 6,099
    edited November 2008

    Carrie, the 12-week window comes from studies like this:

    C. Lorisch, et al.  Journal of Clinical Oncology, Vol. 24, No. 30 (October 20), 2006; pp. 4888-4894:  Impact on survival of time from definitive surgery to initiation of adjuvant chemotherapy for early-stage breast cancer.

    PURPOSE: To determine if time to start of adjuvant chemotherapy aftercurative surgery influences survival in early-stage breast cancer.

    PATIENTS AND METHODS: A retrospective review was conducted of 2,594 patients receivingadjuvant chemotherapy for stage I and II breast cancer between1989 and 1998 at the British Columbia Cancer Agency. Relapse-freesurvival (RFS) and overall survival (OS) were compared amongpatients grouped by time from definitive curative surgery tostart of adjuvant chemotherapy (≤ 4 weeks, > 4 to 8 weeks,> 8 to 12 weeks, and >12 to 24 weeks).

    RESULTS: RFS and OS were similar for women starting chemotherapy up to12 weeks after surgery. OS hazard ratio (univariate) for initiationof chemotherapy more than 12 weeks compared with 12 weeks orless after surgery was 1.5 (95% CI, 1.07 to 2.10; P = .017).Five-year OS rates were 84%, 85%, 89%, and 78%, (log-rank P= .013); RFS rates were 74%, 79%, 82%, and 69% (log-rank P =.004) for patients starting chemotherapy 4 weeks or fewer, morethan 4 to 8 weeks, more than 8 to 12 weeks, and more than 12to 24 weeks after surgery, respectively. In multivariate analysis,independent prognostic factors were grade, size, nodal status,estrogen receptor, age, and lymphatic and/or vascular invasion.Initiation of adjuvant chemotherapy more than 12 weeks fromsurgery remained significantly associated with inferior survival,with a hazard ratio of 1.6 (95% CI, 1.2 to 2.3; P = .005).

    CONCLUSION: This retrospective analysis suggests that adjuvant chemotherapyis equally effective up to 12 weeks after definitive surgerybut that RFS and OS appear to be compromised by delays of morethan 12 weeks after definitive surgery.
     

    I've used bold print to highlight the key finding:  if chemo is delayed longer than 12 weeks after surgery, the time to relapse is shorter and overall survival is lower. Here's a link to the original article:  http://jco.ascopubs.org/cgi/content/abstract/24/30/4888

    I misunderstood the purpose of your original post.  Now, I see that you are looking for someone who will reassure you that not having chemo is a reasonable choice, and that your prognosis without chemo will be as good as it would be if you "poisoned" yourself with chemo.  No one can make promises about the outcome of any cancer treatment, as much as we wish they could.

    Since you were seeking that reassurance from women with triple-negative BC and mine was not, I'll quit now.  If you want more information about recurrence risk and survival with "natural" therapies, you might want to check the Alternative Treatments forum of these boards.

    otter 

  • pennylane
    pennylane Member Posts: 177
    edited November 2008

    Hi Carebear, Hope you are doing well...I can so relate to your reluctance to start chemo.  It seemed like the worst part of the word cancer...I tried every angle and every thought system myself to get out of it.  I have very similar stats as you and in the end just couldn't justify not doing the chemo.  You see, the numbers are just too good.  I went from 80% to closer to 90% chance of no reoccurance.  That's a nice little notch up even though it doesn't sound like much.

    I figure early stage is a good time to be greedy and get those numbers as close to perfect as possible.  Oddly, I think I would be more inclined to go completely alternative if I was diagnosed as Stage 4...Thankfully you and I were given a huge break and are Stage 1. 

    You could speak with your Dr and get rid of the Adriamicin part of the chemo program.  Perhaps just the TC?  I mean, if future heart problems are a concern.....

    Sorry, I know this is not the response you are seeking.  You are so right about no guarantees with chemo...I hope you find happiness and peace with whatever your decision is.  You are so young and should not have to deal with this sort of thing....My best wishes to you, P

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    I'm sorry but although I'd decided to sit on my hands for this question, I must add something or my conscience will bother me for whatever time I may have left.

    My cancer did not react to TC. The only thing that brought it to its knees (it did not kill it completely; witness my two recurrences) was AC. It really is, with triple negative, best to have some form of rubicin, whether doxorubicin or epirubicin.

    I cannot, cannot, cannot begin to understand how someone at the beginning of this journey, someone young, with children and every chance on her side for complete recovery, would mess around with vitamin therapy all by itself. Why, why, why?

    Love to all,

    Annie You Know Who

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited November 2008

    There is one factor many do not consider with treatment.  If you have your tumor removed with clear margins.  There is no proof there is any disease left to treat. Chemo must see the disease of certain size to be able to go on attack.  Microscopic disease is not found by all chemos. This is a chance we take getting chemo with clear margins. (Are we really treating anything at this time?)  Many have chemo and still have recurrence...why is this if the chemo was to clear up any left over cells?  Chemo is not a perfect science as we all can see. 

    I feel for you ladies with early disease.  There are no easy answer. The only proven treatment for complete response is clear margin surgery. Less than 10% of us who have recurrence will get back to remission. This does not say a lot about chemo.  I have been told more than once my numerous oncologist...giving you chemo and no sign of disease is a waste of time... Standard protocol requires chemo.... NOT proof that it really is treating anything for early stage disease. We have ladies who did not have chemo for early disease years ago because they did not know they were TN.  And are doing find.

    I hope you ladies find peace with whatever you decide. 

    flalady

  • Roya
    Roya Member Posts: 346
    edited November 2008

    Annie, I pm'd U

  • Shirlann
    Shirlann Member Posts: 3,302
    edited November 2008

    Well, Carebear, sadly, there aren't many who did not do treatment and survived, so I doubt you find any. 

    One of the worst things about cancer is the unpredictability.  Many people say, "Why kill a mosquito with a hammer?".  Oh, how true, but since no one, and I mean no one can tell you what will happen, no matter how you start out, most of us just do what seems to have worked well for the majority of people.

    I have been on these boards for about 7 years and have watched several women try "alternative" treatments.  Not one has survived.  But, of course, you could be the first, as I said, no one, and I mean no one can tell you what will work and what won't.  Frequently, Dr. Susan Love has had women with a big, old, lazy breast cancer get it out and never hear from it again.  Then, she has patients with pin sized tumors that metastasize before they can get the patient into treatment.  It is this "unknown" that scares us all half silly.

    AND what difference does it make if you DON'T poison yourself and die of mets? Might as well try the poison, at least you will have no "what ifs?"

    Gentle hugs, Shirlann

  • DiamondJAL
    DiamondJAL Member Posts: 51
    edited November 2008

    I also was early stage, small tumor, triple negative, IDC.  At 42 years old and othewise healthy, my Onc said we are going to treat you agressively now.  Why?  Because you are young and strong and can handle it now.  I am going to give you the BEST chance of survival that i can give you, he said.  I had AC/TC and he said there are many chemos out there, newer chemos but the older ones, the ones that make you sick and make you lose your hair are the ones that work the best.  Your hair and everything else comes back, your life doesn't.  I have a top notch Onc at Hillman Cancer Center in Pittsburgh PA and I took his best advice.  Single mom, beautiful son, I had to give myself every survival chance possible.  Four years later I'm doing great.  And no, chemo does not kill everything because I carry the HPV virus and prior to breast cancer had vulvar dysplasia due to the virus.  The chemo re-activates this virus so once I was thru the BC, I had to deal with the dysplasia being activated again. 

    It's a personal / doctor decision but you have to do what you can to beat it and survive. 

  • CalGal
    CalGal Member Posts: 469
    edited November 2008

    Carebear -

    Believe me, I can understand anyone not wanting to do chemo.  On my initial dx, I was thrilled that bi-lat lumpectomies (due to invasive on L & DCIS on R) followed by rad'tn on the L was a good option or so I thought.

    I was Stage 2, grade 3, with clear nodes!  If my nodes had bc, I would have done chemo.

     What no one ever told me was the while bc USUALLY spreads to the nodes first, it can also directly spread through the blood!

    One year after finishing rad'tn, I found a lump (missed in a mamm several monhs earlier ) and I pushed for a scan - and got more than I feared - bc mets.  I knew I was high-risk, but at that point, I took the BRCA test and was not surprised to be BRCA1.Triple neg is more aggressive, particulaely BRCA1.  My nodes continued to stay clear.

    Since then, I've been very aggessive and pro-active, but lately I've had more progression.

    Conside all your options.

    Best to you,

    CalGal

  • PSK07
    PSK07 Member Posts: 781
    edited November 2008

    18 years ago, while I was pregnant with my first child and my mom's third grandchild, she was diagnosed with BC (IDC). Lumpectomies were beginning to come into vogue, but she went for the modified radical mastectomy. She also went the aggressive route and had chemo. Not fun for her at all. She got lyphedema in one arm, chemo brain, and - this is the big one - No Evidence of Disease. 18 years later, she has 7 grandchildren and is still NED. No cancer.

    This week I've cried over people I don't know except for their stories on line (dear Annie Camel Tail you are in my thoughts) who have been dx stage IV or died (Jodi) and the death of a family friend (Gary, age 48 St IV cancer). I've also thanked God for allowing my mom to celebrate her 80th birthday on Friday.

    As a rad onc said to me, don't save it for the next time. Do it NOW. Your best chance at a cure is the first time. By the time it gets to the second time, you've lost powerful tools.

    There are many oncologists and cancer centers that have nutritionists and naturopaths and other complementary medicine professionals on staff to work with people through conventional treatment.

    Please don't lose a chance at life with a regimen that has no proof of success.

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