Polite Explanations are Welcome....

Anonymous

Nancy, That's Life and Maud - that's why I am here too, asking questions -first was for my daughter's sake, but now I am wondering for my own course of treatment options. 

Why was I not told anything, the first bs gave a speel for surgery and said "after the surgery you will be sent down to the oncology department, chemo and rads."  I opted out, told him so, that I would be back in a few months to see him about the surgery and I would want another ultrasound. 

Opting out... that I had decided before I ever had cancer dx.  Always said if I got cancer I would come out with all cannons blazing, alternatively speaking, and I have. I did not say never to chemo or rads, just that first things IMO would be first.  And the more options, the more research, the more success and hope, the better for all of us. 

I am wondering now, like Maud, just how postmenopausal I am, same age, same years since last cycle, hhmmmm.  If there there is another anternative, holistic or synthetic or chem/rad based, I want to know.    There are so many choices in alternative therapies, Protocel, Poly MVA, antineoplaston treatments, MMS, MSM, LIPH, DIM, OA, d3, coQ10, fucoidan, Laetrile, 714X, paw paw, cryoablation with argon gas (very popular in Europe, spreading in the US but I found the US source for me too late, darn darn darn would so have done that one) IPT therapy with extremely low dose chemo, very low dose chemo with about any of these..... so many choices.  And so many research projects happening on both sides, allopathic and holistic.  

People are in great need of all options, all possibilities and combinations, because every single person is an individual body with very individual needs.  Yes, we do need it both ways, we need both worlds of medicine, all cultures, it all comes together for the good of all.  

I'm not saying any one of the alternatives works on its own, this is a compilation of what is needed for one person, with or without the 'traditional' treatments too. 

I needed so many questions answered.  So much support, got next to nothing, who am I kidding - nada.  Did all this on my own, protocol after protocol to transition into, month after month.  Everytime I reached out to an oncologist or to get into a cancer center, they turned me away because I would not take chemo or rad in my treatment, and the other center for holistic was cash only and I had to buy my treatments cash, so that was not happening.  And yes, we have wonderful insurance if it would be billed right. 

Sooooo my blood work was never done until this week.  I found the mass in JULY and had it out the end of November, and just now am having a bone scan and blood tests.  Someone dropped the ball and it was not me. 

And then, after surgery the BS that I was so happy I chose offered me Tamoxifen and hem-hawed around about a masectomy because he missed and left a positive margin... that's it.  We won't even go through the rest, it has been anger-provoking.

Please moderators, do not shut down this thread.  There is information here that is needed.  I have read many other threads in alternative/complementary and natural choices, and the same thing happens - those who chose alternatives are challenged for one reason or another.  It gets heated, buttons are pushed, opinions are bounced around in ways that do not happen in other forums.  I haven't been on bc.org long, but that is the pattern I have found in all my reading.   Thank you.

 

Diane 

1Athena1

Call me a hopeless simpleton, but I really didn't expect anything from my onc for this simple reason: there is no known cure for BC, therefore, all he can offer me is an "approach" - not by any means a guaranteed way through. So my expectations were extremely low. I think I would have felt the same for any other illness of no confirmed origin or known cure, frankly.

I loathed my first opinion and liked my second one because he listened to me and respected my point of view. My first one hewed to the party line with extreme arrogance. She even said she "wished" I had been HER2 +++ so that she could offer me Herceptin. In other words, she wanted to prove herself and her weapons, not wish me health. Despicable. My current onc respected my decision to forgo chemo and rads after a valiant but polite effort to convince me otherwise. I respected his wisdom and he respected mine. We have an excellent relationship. I may die of this disease - or not - and he and I both agree that we do not have the answer one way or the other. Only that I am presently in very good health.

Sorry if this seems a bit off topic (I also rejected OA) - I am speaking to the part of this thread that discusses one's doctors as practitioners.

1Athena1

You too Nancy! Toast to all our healths on this Saturday night!

orange1

AA/Maud - come on now - your killing your credibility when you post as someone else.

AlaskaAngel

Here is to all our healths!

Finding whatever answers there are has to be a shared project because each one of us has different interests and skills and pieces of the puzzle.

It would be important to know what level of knowledge oncs are required to achieve and maintain about endocrinology for patient management. The usual method in patient care is to send the patient to each specialist for analysis and obtain a complete, individualized report from the specialist. The history of cancer treatment has been to short-cut much thought about the endocrine system that is affected, and instead to just cut, radiate, and use toxic pharmaceuticals to kill cancer cells. However, the breast is a gland, so it does make sense to have each cancer patient's endocrine system analyzed for true understanding of the endocrine processes of the breast and the relationship they have to the entire endocrine system.

As breast cancer patients we are at a scientific point where "the earth is still flat", without that professional endocrine analysis and recommendations specific to each individual's cancer. I don't know what information about cancer that endocrinologists are required to acquire and maintain for patient care. It would be important to know that information.

My own experience with this comes from my referral to an endocrinologist in the Seattle area. I have no other chronic health issues besides breast cancer. Endocrinologists did not want to accept me as a "breast cancer patient", even though clearly the changes from menopause involve metabolic issues as well as many other endocrine changes. When I finally did manage to get an appointment with an endocrinologist, it was clear that he does not deal with the endocrine issues related to breast cancer. I was given the full range of standard endocrine testing and all my tests came back normal. He specifically told me that it was clear from the test results that I am eating the best possible diet to minimize common problems, even though gradual  weight gain was continuing for me in spite of daily exercise and that was increasing the very risk for recurrence that my cancer treatment was intended to minimize. When I mentioned to him that multiple trials were being offered for the use of metformin for cancer, he had no awareness about it. I was, however, able to convince him that it would do no harm for me to have an Rx for metformin. I would prefer to participate in a clinical trial for the use of it for breast cancer but for most clinical trials I am now considered "too far out from diagnosis and treatment" to qualify.

My impression at this point is that the medical hierarchy does not train specialists with an endocrine emphasis in diseases of cancer of the glands for us.

Killing cancer cells is a simple way to visualize eradicating cancer and a great sales pitch technique because it IS simple. However, cytotoxic pharmaceuticals are not known to kill stem cells that may continue to support the growth of cancer.

With 2/3 of all breast cancer patients being over age 55, and with treatment focusing on deliberately causing patients to become fully postmenopausal, as a definite and distinct purpose of treatment, it is important to be able to determine the point at which any given patient is actually fully menopausal. That is a rather basic concept, but as ridiculous as it may seem to us, our specialists don't seem to have spent much effort trying to find ways to determine that information definitively for each one of us. Maybe it is just easier to throw medication at us that we may not benefit from at all, in case and in hope that eventually each of us achieves postmenopause. There is also little or no counseling or advance guidance for the changes that happen with postmenopausal status and it is not compassionate or helpful not to provide that to us as a definite part of our treatment.

As a starting point, there is this link to investigate:

http://www.menopause.org/edumaterials.aspx

This information is from that website:

"At present there is no commercially available test to predict when menopause will occur. However, there is interesting onging research on Anti-Mullerian Hormone (AMH) that has been shown to have some promise for estimating the timing of menopause. Commercial salivary testing for estrogen has not proven accurate or reliable, and desired levels of hormones in postmenopausal women have not been established.

What about testing for follicle-stimulating hormone (FSH)? Sometimes, elevated FSH levels are used to confirm menopause. FISH is a hormone produced by the pituitary gland that triggers the ovaries to secrete estrogen. As the ovaries' production of estrogen declines, the pituitary gland releases more FISH into the blood to trigger more estrogen production. When a woman's FSH level is consistently elevated and and she is no longer having menstrual periods, it is generally accepted that she has reached menopause. However, a single test can be misleading because estrogen production does not fall at a steady rate from day to day. Instead, both estrogen and FSH levels fluctuate from fairly high to fairly low during perimenopause. Also, if a woman is using certain hormone therapies (such as birth control pills), an FSH test is not valid."

(I wonder what our many medications do to the validity of hormonal testing.)

 (http://www.more.com/health/perimenopause-menopause/join-club-how-confirm-your-menopause-status )

Well..... duh..... No wonder medical practice is still aiming blindly at the target and missing it so much of the time.  They don't even have a clear target to aim for when they use medications as the arrows to bring about postmenopausal status as a way of delaying or avoiding recurrence.

My personal belief is that it would be helpful to us all to have specialized training for endocrinologists in cancers involving the glands, to sit on each one of our tumor boards and provide scientific specialized direction for our care both for cancer treatment AND post-treatment.

These are some logical starting points to aim for.

AlaskaAngel

Orange1,

Your posts have been very helpful many times, and I hope will continue to be.

AlaskaAngel

orange1

I think the metformin is a great idea.  I am just starting to research it for myself.

AA since you are well into menopause - have you thought about getting a couple infusions of zometa.  In post menopausal women it was been shown to signifiantly reduce risk of recurrence.  You don't have to have many treatments - it sticks around in your bones for a loooong time.  One or two treatments would probably buy you additional protection with virtually no risk for ONJ (since the risk for ONJ is roughly proportional to the number of treatments) - no cases were reported for the trial where women received 6 treatments 6 months apart. 

thats-life-

Im thinking of doing metformin too, through my family doc...Hi Nancy

AlaskaAngel

It is something to consider. I've not thought about taking Zometa, because my bone density testing came out so well, probably because of weightbearing exercise and sunshine. I still also think the bones play a role, possibly with stem cells, in cancer and I'm not quite comfortable with complex drugs that stimulate bone production because of that. (I refused blood booster drugs when I did CAFx6 for the same reasons. I do think it is possible that I dodged recurrence that others didn't -- even with refusing trastuzumab -- and I don't know why, but that could be one of the reasons.)

AlaskaAngel

Hi that's life  and Orange1,

It is possible that metformin may vary in its benefit to different patient groups. I'm thinking that just as a maybe and don't know. But in thinking about metabolism.... our metabolism as premenos is much different than our metabolism as postmenos.... I just wonder whether how that might affect how well metformin works in relation to cancer for some vs others. Or not.

I am taking a much, much smaller dose than those in the clinical trials are given. But it still is making a big difference in my life. My diet consumption is still much, much less than I ate as a premeno but at least now I am not constantly intensely having to micromanage it like I did before starting the metformin.

A.A.

orange1

AA wrote: "It is possible that metformin may vary in its benefit to different patient groups." - I am wondering the same thing.  I am going to dig around a little and see what I can find.  If I find no additional info on it, I will probably eventually end up taking it anyway since the side effect profile is pretty good.

voraciousreader

AA again, I think you need to refrain from your sweeping generalizations...such as, "As breast cancer patients we are at a scientific point where "the earth is still flat", without that professional endocrine analysis and recommendations specific to each individual's cancer. I don't know what information about cancer that endocrinologists are required to acquire and maintain for patient care. It would be important to know that information."

Let's be clear about the role of endocrinology as it relates to breast cancer.  Much of what cancer practitioners are doing today is based on endocrinology research.   Here is a link to a study and note how many other recent studies cite this study:

http://mend.endojournals.org/content/22/10/2215.short

I could go on and on about all the research being done that is devoted to studying the endocrine system...so the world isn't so flat in that area.  Furthermore, regarding endocrinology clinicians, from my experience, many of them devote their practices to serving the epidemic population with obesity, diabetes and thyroid problems.  And then there are those endocrinologists specializing in growth issues.  When the DH was diagnosed with his rare genetic METABOLIC disorder, I thought we would just go to "any" endocrinologst.  Was I wrong about that.  Within endocrinology, some doctors become extremely specialized in treating rare metabolic muscle disorders, while the majority of them choose to treat the more common diseases.  And, as I mentioned earlier on this thread...the DH waited 3 months to see one of the handful of cardiologist/endocrinologists in the country....

Here is a study devoted to the trends in endocrinology and breast cancer:

http://www.cell.com/trends/endocrinology-metabolism/abstract/S1043-2760(11)00174-3

 And here is a link for a professor of endocrinology whose particular focus is women's cancer research.....Note that she teaches physician training.....

http://www.cell.com/trends/endocrinology-metabolism/abstract/S1043-2760(11)00174-3

And getting back to questioning the side effects of chemo VS. ovarian suppression here's a recent study that suggests both reduce libido....

http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/Libido-Unaffected-by-Endocrine-Therapy-in-Breast-C/ArticleNewsFeed/Article/detail/713459?contextCategoryId=40142

Regarding making recommendations specific to each person's cancer, THAT'S exactly where we ARE going. Targeted therapies are being developed based on the personal genetics of each woman's cancer. Why do you think the OncotypeDX test was developed? And many of the components of the test, specifically look at cellular hormonal pathways....

Now,  AA will you answer just ONE of my questions?  Do you AGREE that the OncotypeDX test was developed with the idea in mind to spare MORE women of having to do chemotherapy and that the impetus with the SOFT trial and TailorX trial is to spare EVEN more women of having to do chemotherapy? 

Anonymous

Thank you Nancy, glad to join, will look up that article.  Basically, my onc is not accepting the fact that my ob/gyn is convinced that I am post-menopausal based on hormone panel and biopsy results. Looked up Zoladex SEs and adverse reactions messing with the pituitary and have decided against it.  I'm hesitant to lower tamox dosage right now as I'm being investigated for PND by neurologist (EEG +4 MRIs, whole body) SO SCARED.  Paraneoplastic disorder is where your body makes antibodies to a tumour - the problem...no machine has yet detected the tumour(s), PET came back NED.  The antibodies also destroy neurological function, so bottom line, until they find the metastases or a second primary, the situation can deteriorate very quickly.  Should PND be found, dialysis is awaits me  I'm hoping I had a "Tamox stroke" that would account for the neurological deterioration I'm experiencing, thereby my wish to discontinue that med.

Hello Essa, your determination will get you through sister  I've been working real hard putting together a comprehensive protocol, no small feat.  For now, my situation does not allow me to resort to alt. practitioners; I really hope it will eventually, coz would love, love, love to go for reflexology at this very moment !!  I know for a fact that my onc would dismiss me if I went against his recommendations.  Wishing you NED results, hugs

Thank you AA, funny, after posting here, I was googling and bumped into the menopause.org site and was disappointed that help could not be found.  Interestingly enough, this very site has interesting info on the subject.  Unfortunately, my contribution to it will be very limited as I cannot even use my right click to C&P.

Kind blessings 

ETA: Am looking at the O/A option in order to discontinue tamox in both scenarios, sadly, it looks like research is going to be arduous

Anonymous

Love and hugs back Nancy  I am waiting for the MRIs call.  The EEG technician told me that it's likely that all body parts will not be done in one session but in several.  The waiting is real anguish.  It could very well be that the MRIs don't show anything, in that case they will repeat them regularly  . I am so crossing my fingers that the brain MRI reveals I had a Tamox stroke, that way I can discontinue Tamox, get O/A and look at alt. meds, but the EEG technician told me off record that brain looked good

PS - I am hoping that it is the system here which does not allow me to C&P....? as opposed to my brain not being capable of executing that function ? 

AlaskaAngel

VR: Agree and disagree. More and more endocrine research. But with no endocrine specialist assigned to see us, talk with us, evaluate us individually, officially report on us, make recommendations for us, and sit on our tumor boards, the people who do sit there and are not endocrine specialists are the ones making the evaluation and recommendations. That pretty much results in hit or miss use and discussion with patients about endocrine therapies as available options, and genuine advance counseling about the SE's.

Happy Valentine's Day, everyone!

A.A.

vivre

I usually do not stray off the natural girls thread because I just do not like getting involved in all the controversies, but this thread is an example of how heated the topic of alternatives is and how we have to change this!

Do you realize that mastectomies where the standard of care 30 years ago? If a woman had even a small lump, they cut off the whole breast. It was thanks to persisitance by french women, that only the lump be removed that doctors began to do so in France, and with success there, it was finally adopted here. Together women can create change!

Those of us who are passionate about alternatives being an option need to join forces to demand that doctors be more informed about them, and ALLOWED to actually tell us about it so WE can each make a decision based on what we feel is best. For some, that will still be the chemo, rad, surgery, drugs or whatever. But for others, like me, who prefer the empowerment of turning to nutrition, supplements and lifestyle changes, WE should be told we can choose this route, rather than having to fight for it.

I do  not believe doctors are entirely at fault. They are tied to the standard of care or they will be attacked by their own profession and lose their liscense. This is so wrong! Doctors should be allowed to practice according to their own conscience, and to treat patients as individuals instead of diseases. They go to school all those years, but are not even allowed to use their brains to make an educated decision. It is the standard of care or nothing. I believe doctors need to start to revolt and  demand that they be allowed to practice more ethically. After all, they violate the hippocratic oath every time they prescibe treatments that "first do harm". Why don't they demand that first they do NO harm with less invasive treatments? If that fails,THEN bring out the big guns instead of vice verse.

I believe the heroes are the doctors who are willing to think outside the box and put their careers on the line in the quest for the truth. Those like Gonzales, Kelly and Burzynski who are vilified for offering treatments that work should be applauded. They are ridiculed if one of their patients dies, even if they have a higher cure rate than chemo. This has to stop.

Somewhere in the natural girls thread I think there is a link I found a long time ago from an ocologist who was constantly trying to submit his case studies, using alternatives involving nutrition, to be presented at the oncology convention in Chicago that year. He blogged about how it was impossible to get his research reviewed because the board was so anti alternatives. As long as medicine in this country is controlled by drug companies, this will not change. As long as the medical profession continues to be bought out by profit instead of taking the incredible healing ability of the human body more seriously, we will continue to suffer and die needlessly.

So what are we to do?

We need to join together. Our voices will not be heard individually, but will if we are in numbers.

That is the objective of a new movement called "The Canary Party". This is a group of people who want to maintain Health Freedom for everything from choosing whether or not to vaccinate, to being allowed to choose alternative cancer treatments. They will be having a gathering in Chicago next month. If any of you are in the area, I hope to see you there. If you are not, please consider joining this movement. What I love is that it is bringing together people with left and right political leanings in a truly non partisian effort to change the status quo in our health. If we do not fight for the rights to determine what is best for our own bodies, we will have nothing left.

We need to stop fighting about who is right or wrong. There is no right or wrong. The problem is we need to have the choice to personally decide what is right or wrong IN OUR OWN HEALTH. I am so sick of being told I have to take the standard of care. I have not been back to any of my cancer docs in 3 years. Even though they applauded me and are astounded at how healthy I became with exercise, nutrition, etc,  they refuse to acknowledge that I did it  by refusing their protocols. These are women doctors whom I once respected. I have lost respect for them because they are not brave enough to step out of the box. 

Kaara

vivre:  How does one get involved with "The Canary Party"  it sounds like something worthy of pursuing.  Is there a website?

crazy4carrots

Just an FYI about the move towards lumpectomy and breast conservation, spearheaded by the late Dr. Vera Peters in Toronto:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854638/ 

vivre

Kaara-they have a website and a facebook page. You can join either for updates on what they are doing.

AlaskaAngel

In considering the study about older women and reduced success because of lack of adequate radiation and/or chemotherapy, It would be good to have a more precise analysis of just what aspects of radiation or chemotherapy would be most helpful to improve the results for this age group.

http://www.breastcancer.org/symptoms/new_research/20120207.jsp  

For example, given that this age group has less ability to tolerate all of the conditions and drugs for the prolonged treatment with chemotherapy, and given that it is unclear at what age true full postmenopausal status actually occurs, it is possible that this age group may in fact gain more benefit from surgical or non-chemo drug-induced complete ovarian ablation than from chemotherapy.

Of course, we can fail to fully analyze or consider this possibility, and just jump to the conclusion about chemotherapy that the study appears so quick to do, again ignoring the potential for ovarian ablation while they "continue to study" that alternative.

AlaskaAngel

Kathy044

AlaskaAngel: It would be good to have a more precise analysis of just what aspects of radiation or chemotherapy would be most helpful to improve the results for this age group.

Re chemo for HER- ER+ node positive women over age 60 -- stronger (3rd generation) is better.  This is in British Columbia, but when I did my research two years ago the same applied in guidelines in the other Canadian provinces, the UK and US.

http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Breast/Management/AdjuvantSystemicTherapy.htm

scroll down to the notes at the bottom

"Adjuvant therapy in the elderly:
<snip>
1) a survival benefit has only so far been demonstrated with the use of adjuvant anthracycline regimens;
2) benefit is greater with more intensive chemotherapy regimens;
3) survival benefit may not be present, or may be hard to demonstrate for ER positive tumours, especially if node negative;
4) risk of chemotherapy related significant morbidity and mortality is slightly higher in elderly women.
<snip>
By extrapolation from available data, it would appear that older women do stand to benefit from adjuvant chemotherapy, but this type of therapy must be selected carefully, with attention to tumour risk and the fitness of the individual patient for more aggressive therapy."

As for radiation I always assumed that rads were part of the package with lumpectomy.

Kathy

Kaara

I didn't need chemo and I passed on rads, so I know I am probably rolling the dice on the high risk side, but I felt I didn't want the whole breast external beam and they wouldn't give me the partial beam.  I am going to have frequent checks with both thermography and mammo and if it returns, I will have a better idea of treatment options the second time around.  Following an anti cancer diet and supplementation program along with taking tamoxifen should help prevent recurrence.

I'm off all the HRT which probably caused it in the first place, and my naturopath has prescribed low dose Naltrexone, which kills of cancer cells and has no SE's that I'm aware of, and I've been taking it for several months now. 

Chevyboy

I've been reading this thread, but not posting.... I Just like all the information, and researching you gals do....

I found this about Naltrexone....  I don't think any drug, other than chemo, will kill cancer cells.  It would be great, if there were an alternative drug for killing cancer cells, that might remain in our body, but so far....no.

http://www.sciencebasedmedicine.org/index.php/low-dose-naltrexone-bogus-or-cutting-edge-science/

If this were the case, and Naltrexone kills cancer cells, I think we would ALL benefit from doing this, and not go through any further treatment after surgery....Including Radiation.  (IMOHO)