What to do next?

dkm115

Hi everyone,

I just had a lumpectomy, did not get clear margins 3mm left behind. Lymph node involvement and ER+ PR+.

I also suffer from lyme disease and fibromyalga

The Drs. want to do Chemo then Rads THEN hormone pills. Which I am so uncomfortable with.

I am under the care of a naturopath, I do high dose Vitamin C IV 3 times a week. I am taking Myomin to try and regulate hormones.

Feedback on anyone doing similar and good outcomes would be so appreciated.

Moderators

dkm115, is sounds as though you are considering either Complementary treatment, or alternative treatment, is that right? Have you talked with your treatment team about the specifics of the chemotherapy, radiation and hormonal treatment?

Here is our section on Complementary and Holistic Medicine, in case you find it helpful: Complementary Medicine

Momine

DKM, if you did not get clear margins, won't they re-operate

dkm115

yes didn't mention that in between the chemo and rads wimpish I am totally against.

I am all over the place right now I already have a weak immune why would I kill every workings cell in my body!!!!

dlb823

dkm ~ I realize you have some pre-existing conditions that complicate your situation. And I also realize that this is the Complementary Forum, and as many on BCO know, I am extremely holistic-minded, which has evolved to more of an integrative approach to my bc. I also know that few of our bcs are the same... that each of our bodies are different... and that only we can each made these decisions. So... having said all that... let me share a couple of things from my personal experience.

Like you, I hated the idea of rads, but I did them (even with an mx) due to a couple of things about my dx -- specifically a node with extracapsular extension, and an unspecified margin (long story) from my mx surgery. I actually got multiple rad onc recommendations (4, I think) -- looking for a way out. But in the end, I did rads, and they weren't bad at all. No real skin issues or any other problems.

I also hated the idea of an aromatese inhibitor (given to post-menopausal women instead of Tamox), and I had a bad reaction to the one I tried. So I refused to try another one and went with hormone balancing (with a brilliant ND) and things like I3C (another estrogen modulator, like Myomin, DIM, grape seed extract, etc.). I didn't really stick with the I3C more than a couple of years b'cuz my ND told me I didn't need it. Then in 2014 (I was first dx'd in 2008), I was dx'd with bone mets.

I'm not sharing this to scare you or anyone into any tx with which you're not comfortable, nor am I sharing it here in any way to refute alternatives. But I would feel remiss if I didn't share my experience as you are searching for what to do. I have no idea if I would have had a recurrence if I had stayed on Femara (the A/I I couldn't tolerate), or if I'd been more diligent about taking I3C, or if I hadn't dabbled with the hormones RX'd by my ND, or if I had metastatic cells in my body from the get-go, or if I was just destined to become Stage IV. And I don't ask myself those questions now because I feel I made the best decisions I could at the time, and it's all in the past anyway. But I can tell you that I no longer recommend forgoing RX'd hormone modulators in favor of natural ones (as I once did) because I can't in good conscious based on what happened to me, and because since I've been on one of them (Anastrazole) for my mets, my tumor markers and pain level have dropped significantly. I also do alternatives, such as a 95% vegan diet (aimed at low-methionine), curcumin, high dose D3, and modified citrus pectin. But it's abundantly clear to me now (as it wasn't back in 2008) just how powerful and protective the aromatese inhibitors are.

I guess my only other advice is, be very careful about following the lead of others here whose bc may not be as aggressive as yours. I feel I probably didn't take seriously enough the significance of a grade 3 bc, although what happened to me could have been programmed in my genes and unavoidable no matter what I did or didn't do. We'll never know. But when I see someone with a Grade 3 bc asking for confirmation re. alternatives, I can't help by share my experience and concerns, as well as caution them not to think we are alike enough that they can safely make these choices based on someone else's outcome. (((Hugs))), and good luck with your decisions. Deanna

Momine

Deanna, that was a brave post. Thanks.

Momine

dkm115, I sincerely doubt that any of us enjoys surgery or approaches it without any fear. However, what you are facing here is a very minor and brief surgery and it is probably also the single most effective thing you can do for yourself to avoid recurrence.

Chemo, rads and hormone therapy are add-ons, the fundamental treatment is effective surgery. Especially if you are planning to skip the add-ons, you owe it to yourself to get all the actual cancer out.

katcar0001

DKM115 - I agree surgery is scary, and think one of the most important things that Momine reiterated is how important it is to get the cancer out. Personally, I would be more scared of leaving behind unclean margins than having another minor surgery. Growing up in Berkeley, CA, I've always been a "natural" type, and I augment my treatment with some natural supplements; however, I know that my best bet is to follow the scientific evidence. I am taking Tamoxifen, will probably do rads even with a MX as I had focal LVI, and I am going for another opinion on the chemo just to be sure. My best friend died of breast cancer 2 years ago at age 47 after she went 100% natural, including no surgery. She took dozens of supplements and went all vegan. She was so convinced her tumor was shrinking (and her ND told her it was) when in fact it had spread throughout her bones and to her liver. Once her mets were discovered, it was too late to save her, and she went very quickly. It pains me to even write about her. Again, as Deanna said, this is not to scare you but to share an experience that may be relevant to your situation.

Deanna, Thank you for your thoughtful and balanced post. I am sure it will help many others.

Ariom

Deanna I agree with the others, that was both, a very brave post and a very useful and thoughtful post which could mean so much to others facing the same decisions.

dkm, I have to agree with the others with reference to getting clean margins, whatever else you decide to do, that is something that you really should spend some time considering.