Stage II No Chemo, Tamoxife-Radiation & Alternative Treatment

Sorry that you are having to deal with bc. I can't address most of your concerns, but I can speak to one. Doctors are not trying to scare the day lights out of you when they speak of a distant recurrence , i.e. Metastasis. (Local recurrence in the breast is different) The ugly reality is that those with metastatic bc will almost always die from it. Currently, it's estimated that only 1-2% with mets are actually cured. More are living beyond the 5 year mark that was so often quoted and we hope that new tx will increase survival time or provide a true cure.

Your decision is not an easy one and I wish you the best.

Very intelligent posts here, ladies!

Hi there Szilvia11. I am Stage II also. I had no lymph node involvement. Chemo was mentioned to me, but not urged. I did do radiation and I am glad I did that. I have had some lasting effects of that, but nothing I can't handle. I do Qigong, meditation, follow a careful diet keeping sugar to a minimum. I try to exercise regularly. I am still working on that. I drink a smoothie every morning in which I include turmeric and black pepper. More and more research is showing that turmeric can actually destroy the blood supply to tumor cells. I should probably add some turmeric tea every day, and more green tea as well. I also try to do a long fast between dinner and my first meal of the day, in order to starve any errant cells - although I firmly believe there are none. I believe our minds are very powerful and we can either think sick or we can think well. I choose well. I vibrate health. I am 65 years of age, and I have a hard time believing that I have enough estrogen in my body to feed a tumor. I feel the misery of no hormones already. I have not taken Tamoxifen or any AI's. I understand there are those that would not agree with my decision, but I have read tons of research and I really can't find enough to convince me that chemo or tamoxifen would improve my situation, and it certainly is not going to improve my quality of life.. I use meditation daily and visualize health. I believe we all have to choose our own road in all of this. What is right for one person might not be right for anyone else. It is our body after all and our choice to make.

Hi Szilvia,

I can't speak to your treatment options as I was Stage I and no chemo was offered.  I did try Tamoxifen and stopped after 6 weeks due to the side effects.  I also tried an AI for a week and stopped taking it for the same reasons.

I can speak to the idea of a get together with other survivors.  I've been to many gatherings over the past 7 1/2 years in the US and in Canada.  It's a rewarding and fun thing to do.  If you get the chance to meet other gals from BCO, I encourage you to go for it!  The lifelong friendships you make are awesome.  I met my first survivor sister shortly after my diagnosis and we have remained close friends over the years.  A couple of years ago, I hosted a gathering for  the weekend at my house in VA.  We had 13 BCO sisters attend and lots of husbands and friends.  It was the best weekend ever.

hugs,

Bren

Hi all - I am actually doing some research with individuals who have declined some form of conventional cancer treatment as Szilvia discribes. This is for my Masters of Psychology at the University of East London in the UK.

The purpose of the research is to not judge these decisons but use my research as a platform to better understand individuals experiences so the medical community is more aware and open to hearing these stories when they encounter those who may want to take an alternative approach.

As Szilivia describes these decisions are difficult and not always an easy subject to talk about, however, if there is anyone who would like to share their story, I have a couple of places left. The research takes place in the form of a 60 min interview usually over skype.

It does not matter if you have declined conventional treatment, then restarted it at some point, or stopped completely, the research is purely to try and understand your personal experience with the decisions you have made.

No personal or identifying information will be included in my findings as all the data will be anonymised.

If you are interested, or simply want more information feel free to email me via my university email u1253567@uel.ac.uk or sam_eddy@hotmail.com. Absolutely no pressure either way and anyone who decides to participate is able to change their mind at any point as I understand this is a very personal subject.

For anyone who is interested I will be able to email you an invitation letter from my unversity that gives you more information about the study.

Thanks for reading.

Sam

In my case the Oncotype testing seemed to be the deciding factor indicating not chemo was needed or would not be beneficial due to the genetic make-up of my tumor, despite min node involvement. Did you have this test? I think it can be very helpful in deciding treatment options. I met w the RO yesterday and am inclined to go thru w radiation, although I am planning to pass on the superclavical portion he's recommending. I have Hashimoto's and basically I'm pretty sure my thyroid is trying to kill me, therefore I'm trying not to piss it off. RO says w radiating the superlavical regions there is no way to avoid some scatter to my thyroid so that part won't happen.

In some ways our diagnosis are similar. I did have a tubular carcinoma removed (7 mm/ .7 cm). I too am 51 years old. Strangely enough both of the two surgeons I consulted w who both viewed my breast MRI also thought I had DCIS (cribiform) around the tumor, but when they did my lumpectomy, no DCIS and no one has explained what happened to that. It seems they took out a pretty good chunk of my breast to get what wasn't there-pathologist found only benign calcifications around a tumor that was also smaller than they had thought. I guess I could be pissed about it, but I did get very clean/wide margins. Or maybe my body cleaned the DCIS up on it's own. Hmm.

About 8 months before being dx w bc I switched to a strict Paleo diet (no processed foods, sugar/dairy/gluten/soy) lost 20 lbs, felt great, finally got my thyroid and vitamin D levels stabilized. I'm so glad I made those changes when I did as everything is challenging due to how this dx of BC has messed with me psychologically-I just feel worn out 1/2 the time and all I've had so far is surgery and cooking Paleo involves a lot of work and careful planning.

Removing processed sugar alone is challenging-many people write they've cut out sugar, but unless you are making your own breads w/o sugar, most commercially prepared bread products are full of sugar or corn syrup or something like that.

Still, node involvement is often a game changer. It has certainly given me pause. The low oncotype score makes me feel good about no chemo. I lost my mother to breast cancer about 8 years ago. She did everything-chemo, lumpectomy, rads, tamoxifen but died w/in 4 years of her diagnosis with an ER+ tumor, despite an initially good prognosis. So I know choosing conventional therapy holds no guarantees and my mother suffered as much from her treatments as the disease. Obviously, tamoxifen did not help my mother. The ability to metab tamoxifen properly (about 10% of us don't) tends to be hereditary, and while there is a test for this it isn't regularly given and my current OC won't order it for me and even if she did request it, my insurance probably wouldn't approve it, so given my mother's experience there is no way I'm going to take it and deal with the side effects w/out knowing if it is doing me any good at all. My mother had mets to her liver, or they think they were mets. Like many women who develop liver mets while taking tamoxifen, my mother's were never biopsied, just assumed to be mets from her breast cancer, not a new primary. Despite the fact that tamoxifen causes liver cancer in labs animals, when women taking tamoxifen get liver mets it is often assumed not to be a new cancer, so I don't think we really know the true risks associated with tamox and liver cancer. Anyway, I'm not going there w/out knowing if I can metabalize it properly.

Hormone test done a couple months ago show me being on the border between pre-menopause and menopausal so ovarian removal to maybe use AI therapy is something I am seriously considering. Many studies have also shown having ovarian removal, if you are premenopausal, confers about the same benefits as chemo (for ER+) and since I'm not doing chemo...............

But truth be told, I think I was on the path to cleaning up my BC already. I believe years of not so healthy eating, combined with probably years of not having enough vitamin D and my thyroid being a mess left me wide open to BC. Now I'm better, but the rads are going to happen. As far as I'm concerned removing my ovaries is hormone therapy and if I have that done, that may be it.

I am considering natural bio-identical progesterone therapy at this time, per recommendations of an orthopedist. Never thought I'd go to that type of doctor for cancer therapy, but he's the only one talking to me about diet, exercise, etc.

Labelle, what you said above....ditto. I find it super disturbing that so many "assumptions" are made in diagnosis and treatment. I've never been comfortable with "since you have bc, we can assume this is mets" theory. Seems really irresponsible when dealing with cancer, considering how specific the treatment options are. I remember bitching to my onc about it, who completely understood, but explained they can't be biopsy-ing every little thing. Me...."why not?" Him..."cost". I don't want to accept that explanation, but I guess I have to...but I don't. 

I was very iffy about tamoxifen. I did not like the SE profile, especially since my aunt had uterine cancer and my mom had ovarian cancer. Thankfully, my surgeon, who is also my main doctor, agreed with me and supported my decision to have an ooph and go on femara instead. I was on the cusp of menopause anyway and for lobular cancer, femara is more effective than tamox. One reason my doc supported me was that he was involved in the study comparing tamox and AIs. The results had not yet been published at the time, but he knew what they were going to be.

My point being that I think it is important to find a doc who will explore options and find a solution that works for you. Hormone suppression appears to be very effective at keeping the beast at bay and there are other ways to do it, for example surgically or chemically induced menopause, than simply tamox.