Just Plain Scared

Was chemo recommended and you are refusing? Did you decide not to do radiation or was that not recommended also? Sometimes there is no other treatment after a BMX anyway and you will feel like you are not doing anything but waiting for the next shoe to drop. It is normal, even for us that have gone conventional routes. Once treatment is done we feel like we need to keep doing more or it will come back. I see both conventional as well as a Naturapath and a Homeopathic drs. Losing weight is a very good thing in helping with a recurrence so that is good. Supplements I think are over used and money is better spent getting nutrition from quality organic fruits and vegetables. I have cut back on all my supplements except vitamin D and C. I take a baby aspirin every 5 days with the weekend off. I am not a vegetarian but I don't eat a lot of meat and try to have fish at least once a week. I take a yoga class which has really helped lower my blood pressure. I juice a lot and drink a lot of water.



It will take some time for these feelings to retire to the back of your mind. I don't think that they ever totally disappear. Don't despair as we have all been there and we feel your pain. Wishing you the best in treatment and outcomes.

I only take vit D and vit C. I do not take anything else. Chemo was not recommended to me as I was DCIS and node negative with clean scans. My Paget's was a recurrence from IDC and DCIS previously and I did radiation for that. My original Dx was Stage 1A node negative. If the cancer does return for me now it will be mestatises and I will then throw the kitchen sink at it if I have to. The second time around the only cancer that was found in the entire breast was right in the nipple duct, nowhere else. None of it showed up in a mammo or US. I insisted on a biopsy of the nipple tissue that that changed for my own piece of mind. I will also insist on an MRI every other year on my new DIEP breasts.

I also will refuse chemo, rads.

My surgery comes soon and im looking for people who has some experience with alteratives...at least i know im not alone in daily basis...i need to know   what i must  be ready for ...here in holland people usualy follow doctors advices 100%. it seems  im the only rebeling patient?

Barbiecorn - chemo/herceptin for HER2+ve helps reduce your risk of distant recurrence by 50%. I am not trying to convince you to do it here but wanted to correct your statement in case someone else is mislead.

Barbiecorn, I don't think there are many early stagers who do NOT feel scared once they have decided on their course of treatment - and this is independently of whether they take the recommended chemo and rads or not. My point is, you are NOT alone - I am sorry that you are going through those feelings. I think it is simply the product of having a disease with no known cure, no assured cause, and to much uncertainty.

I refused chemo and rads because I didn't believe in the science of those treatments for my BC - I did not choose alternatives, but decided to go with BMX and hormonals and some complementary measures. I went through my periods of fear. I think it's sort of a rite of passage that we can't avoid. What matters is that you do what fits your values and goals best. But in a disease clouded with uncertainty, there is always room for doubt.

Here's hoping you walk through that dark passage and come out at the other end.

We all here are doing what we can.

Hi Barbie:

I do have a great link that may help you. You put in all your stats and it gives you benefit of treatments.  http://www.lifemath.net/cancer/breastcancer/therapy/index.php

I can tell you each of us must decide what is best for us! We all have different dx, stages and tumor make-ups. I made the decision for no treatment after surgery based on my oncotype score, the studies showing that ILC did not respond as well to hormone tx or chemo and the above tool.

Good luck!

barbie: I have not heard of Charles City. I am actually close to New Orleans.

Barbie I wish u loads of luck with whatever option u choose, I just wish u had more confidence in it--u sound so scared and it might be fine. And I don't think anyone here would criticize any decision anyone would make--it is u'r body, u'r choice.  But, yes there is a but, Suzanne Somers has done all alternative methods, she now sounds like she's a little off--well way off--she even came up with an idea of how to grow boobs, that idea was put way under the rug so it was not going around for long. I followed her for many years and liked her loads--then she started coming off the wall.

So if this is truly u'r decision and not influenced by her book then go for it, but if somehow it is influenced by her and her story think very carefully.

I went traditional, but who knows but I will say doing herceptin u'r heart is monitored all the time and if they feel that the change is significant they do stop the herc. and I am u'r age and it was fine. Good Luck and no matter what u decide PLEASE enjoy u'r dgtrs wedding and her wonderfully happy day.

Barbiecorn:  Where do you get the statistic that chemo only reduces the risk of recurrence by 1.4%?

My onco told me that for me, chemo would reduce the chance of a distant metastasis by 30%.  So if there were a 25% chance of a distant metastasis without chemo, adding chemo would bring it down to about 17% (8% is about 30% of 25%).  I am quite sure this figure has been validated through clinical research.

I am not trying to convince you to do a treatment you do not in your heart feel you want to do.  Just saying you need to be careful about throwing around untrue and misleading stats.  There are  many women on these boards who are new, vulnerable and making treatment decisions.

Barbiecorn, I think ou have to start chemo withing 12 weeks.  But i heard that Herceptin is effective up to a year afterwards - however, it may be in relation to chemo.  As in, you can start it up to a year after finishing chemo.  I think Evebarry is doing Herceptin alone - maybe talk to her.

Yes, Zuvart.  I had Taxol.  Thank you very much for the scary statistic -what's your point?  And why the smiley face? 

Barbicorn, most women treated or untreated at times feel like a ticking time bomb. Women, who go through the whole course of treatment are not guaranteed a NED. I've personally known a few women who did the whole nine yards, whose cancer either grew or spread during treatment or soon after had a recurrence. A few of these women have passed away while on treatment. There are women who choose alternative, who don't also don't make it. We have to do our homework and decide for ourselves what we can live with.

 I know if I did chemo it would do me in. I am so glad I did the herceptin without the chemo. My oncologist said in the beginning that the only ones who have heart issues are those who do chemo and herceptin together. That herceptin doesn't have side effects alone. After the second herceptin infusion my EF dropped 15pts to 50.  Now that I have to see a cardio specialist due to herceptin, I can't imagine what kind of place I would be in if I had done chemo and herceptin together. With the herceptin I've also develop strong heart palpitations, sometimes breathless, and fatigue.

If the herceptin doesn't do the trick along with supplements then I'll accept what comes my way.

In your signature you don't have your HER2 status. If they suggested you take herceptin it would seem that you are HER2+ . Most don't have a problem with herceptin. I went a long with it because it doesn't get rid of your immune system, rather flags HER2+++ on the aggressive cancer for destruction. It's more of a natural therapy...I think? I still have questions about the herceptin, although doing it on a slow weekly basis due to my heart EF. Where chemo kills the killer cells, and wise life long ammunity cells that took a life time to get...Once those wise long term immunity are gone you are vulnerable to catch just about anything. Plus, I don't get taking the two together in that together they seem counter productive. But, for some, especially those unlike myself, who are young and have a healthy strong immune seem to handle the combination better.

Do you have an oncolgist? Are you completely on your own?