Just Plain Scared

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barbiecorn
barbiecorn Member Posts: 437
edited June 2014 in Alternative Medicine

I am just plain scared today.  I have been coasting along since my BMX in Feb. of this year.  I am HER2+ and ER+ PR- - my nodes were clear, margins clear, etc.  I am not doing conventional treatment (at least not now) - My daughter is getting married in three weeks and have only been taking lots of vitamins, supplements, lost 30 much needed pounds, doing everything alternative.  I have an appt.with an alternative doctor right after my daughter's wedding.  Found this dr. in the back of Suzanne Sommers' book.  My question is for all who have a similar diagnosis as mine.  How do you deal with the uncertainty.  What do you feel is the best course of action regarding vitamins and supplements.  I feel like a ticking time bomb.  I am in therapy, doing accupuncture, everything I can but still feel so vunerable.  (((hugs))) to all.

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Comments

  • Snobird
    Snobird Member Posts: 593
    edited May 2012

    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.

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Chemo, AI's and Herceptin was recommended and I refused.  Going to alternative doctor in three weeks - What supplements do you take for ER+ and have you done anything for HER2+??  Thanks for your support.  Barbie

  • Snobird
    Snobird Member Posts: 593
    edited May 2012

    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.

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Thank you Snobird.  I feel that if it comes back, I too will throw the kitchen sink at it but because I refused the conventional treatment, it may be too late if that happens.  Just plain scared.  I am a senior and I do want a quality of life at this point.  Just a down day...I guess we all have them...but my only daughter (child) is getting married in three weeks, so I better perk up....((((hugs))))

  • himalaya
    himalaya Member Posts: 149
    edited May 2012

    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
    barbiecorn Member Posts: 437
    edited May 2012

    Yes, Himalaya - there are not that many of us at least not that we know of...some do not post here.  It is scary when you do not do the normal conventional that everyone else does but from what I read chemo helps in only 1.4% not to have a recurrence of breast cancer.  That percentage is not high enough for me.  But I do have to do something about my ER+ status.  Good Luck!!!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2012

    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.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    Thank you, SusieQ - I've often wondered where that "1.4%" chemo statistic came from.  For instance, childhood leukemia used to a death sentence, but now, thanks to various chemos, the survival rate is over 80%.  Clearly, there is a benefit.  I wonder if the people who did that study just took really advanced cancers, metastatic cancers, etc. 

    Barbiecorn, I know you don't want to do chemo, but have you even tried the hormonals?  I'm on Tamoxifen and it's really fine.  You could always try it and then quit if the SE's were too awful.

    I'm not sure what to recommend - I hope your alt doctor is able to come up with something comprehensive.  Some do mistletoe, some do Chinese herbs, most do lots of supplements.  Stuff isn't cheap, though, that's for sure.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited May 2012

    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.

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Thank you ladies...I am not saying I will not do anything...I am trying alternatives but would consider more conventional if the alternatives do not work.  I know I have to get the estrogen blocker.  I will make more decisions after I see the alternative M.D. after my daughter's wedding which is in three weeks.  I am not opposed to hormone blockers - I know I need to get that straightened out but Herceptin can cause heart problems - most of my family died in their 60's of heart related problems and I am on blood pressure meds.  Was on Lipitor also.  I am fearful of a heart attack also.  I am 66 years old.  I just keep thinking that maybe it won't come back but who knows...that is where my fears come into play.  I just want to have a quality of life....AI's cause depression which I suffer from anyway and am on meds for and the Herceptin can cause the heart problems also.  I am between a rock and a hard place and just praying a lot.  Thanks Ladies for your input....(((hugs and prayers to all))))  Barbie

  • dixiebell
    dixiebell Member Posts: 280
    edited May 2012

    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!

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    Barbie... I did do chemo and found it to not be difficult... I am also on blood pressure meds and so I requested not to have adriamycin. The Herceptin for HER 2 pos is VERY effective and Her2 + is aggressive, so you may want to reconsider the chemo.

    Dixie... So you had 2 positive nodes and chose not to do chemo??

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    I too have ILC - I had no positive nodes.  I did the lifemath and with or without treatment, the difference was minimal.

    Maybe ILC does not respond that well to treatment.  I am praying that the surgery was enough.  But who knows.  Yes, everyone has to make their own decision.  We can only hope it is the right one for us.

    I have spoken to two women who did not do Herceptin for HER2+ and after seven years are fine.  I can only hope I will fall into this category.

    Prayers to all!!!!!

  • dixiebell
    dixiebell Member Posts: 280
    edited May 2012

    Yes I had 2 positives but oncotype of 5 and only showed 2% chance chemo would work and risk outweighed benefits. Also studies show ILC does not respond as well to meds as other type if breast cancer.

    barbie are you her2 +? I am not and have not researched that. Make sure you do lots of reading as I understand it is more aggressive- knowledge is power!

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Dixiebell. Do you live anywhere near Charles City?  My sister-in-law lives there. 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    I am triple postive and had ILC and IDC - more ILC than IDC, I think.  Chemo kicked my cancer's ass - and that was before I started Herceptin.  If I had done Herceptin with chemo, as is standard, I likely would have gotten an even better result.  I also didn't have any heart problems - I would recommend supplementing with fish oil and CoQ10 to help protect your heart, if you decide to do it. 

    I just wanted to post because people say that ILC and hormone positive cancers don't respond to chemo, but mine sure did.  Who knows - it might have been the Her2+ factor - that responds very well to chemo. 

    Everybody is scared after treatment, no matter what they have chosen.  Most of us cling to what we have done as a way to reassure ourselves.  Barbie, I think of 66 as very young - my mom is 67.   I realized that you have not asked my opinion, so I won't push this matter, but I would recommend starting the Herceptin and ask to be monitored more frequently.  You can always stop.  Same with the hormonals.  I had some side effects, but found that exercise and supplements really helped alleviate them.  And now they are gone.  If you were my mom, I'd be having a fit.  I want that lady around a long, long time.

  • dixiebell
    dixiebell Member Posts: 280
    edited May 2012

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

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Thank you sweetbean for your concerns.  Who knows what I may end up doing.  I am right now concentrating on my only child's wedding in two weeks.  That is all I want to think about.  I struggle each day with what decision to make.  But I think the window is over for chemo and Herceptin anyway for prevention of recurrence.  I am post op four months now.  No one knows what tomorrow may bring.  I will be seeing my breast surgeon for a check up right after the wedding.  I will discuss more with her then.

    I see you were diagnosed in 2010.  May you have many more years of good health ahead of you.  Thanks again.  Barbie

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Okay Dixie...just wondering.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    I think you can start Herceptin up to a year after surgery.  Not sure, though, but worth exploring. 

  • camillegal
    camillegal Member Posts: 16,882
    edited May 2012

    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
    barbiecorn Member Posts: 437
    edited May 2012

    Thank you so much camillegal - No my decision has nothing to do with Suzanne Sommers...we also had a different type of cancer so it is not so...I watched a video though of stem cell reconstruction of her boobs and she did regrow her damaged boob (from the lumpectomy) - it was amazing to watch.  Were you diagnosed as Stage IV in 2007??? Just curious and if so, you obviously feel Herceptin was the right move for you.  Thanks for your information. (((hugs)) Barbie

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Sweetbean - I never heard you can start Herceptin up to a year after surgery.  I did hear that the window was closed I believe after 8-12 weeks with chemo and Herceptin but I may be wrong. 

  • candygurl
    candygurl Member Posts: 130
    edited May 2012

    Barbiecorn, I think you should just wait to see what your alternative doctor recommends too.   Being guided by a professional will really help.  As you know, the alternative doctor will take your concerns about quality of life; your medical history and the fact that you are a senior into consideration before giving you treatments, supplements, a diet, a detoxification plan etc. 

    BTW I think selecting one of the doctors that Suzanne Somers recommends in her book "Knockout" was a smart.  He /she probably would have all the alternative advanced treatments, can help balance your hormones, and if necessary, integrate standard BC treatments (i.e. Herceptin)  in such a way that won't compromise your health.  

    In the meanwhile, I would just go on doing what you're doing, drink plenty of green juice and enjoy life. And with all that weight that you dropped,  I'm sure your daughter is very proud of your proactive approach.

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited May 2012

    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.

  • candygurl
    candygurl Member Posts: 130
    edited May 2012

    Sweetbean,  did your MO use Taxol to shrink your tumor? I read that if you treat cancer patients with Taxol before surgery to shrink the primary tumor, levels of circulating tumor cells go up 1,000 to 10,000 fold, potentially increasing metastasis. The study was done at the University of Marilyn and a cancer Stewart Greenabaum Cancer Center.  :)

  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    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? 

  • camillegal
    camillegal Member Posts: 16,882
    edited May 2012

    Barbie I guess I misspoke about SS I did not know about the lumpectomy part--my apologies---another side effect--chemo brain--LOL that'll make u think twice LOL

    I was Stage IV from te get go- soething to do with nodes being screwed up all over the place not just my breasts, I think it was after my 2nd operation that it happened or third--I really paid very little attention to my cancer stuff- it sounded to complicated so I just chose to follow orders for me ignorance was bliss and I never worried about anything--I know that's not tradional either so that was my path--and I know the stage only cuz my dgtr told me--but that's why everyone does what they feel in their heart what to do --my concern is u'r fear of choice--not the choice---that's totally u'r decision.  I just felt I didn't want u to get on a bandwagon without all u'r options so I truly wish u the best and have the complete confidence in u'r choice--I think positive attitude is a big part of healing.

    Sorry if I said anything offensive to u.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited May 2012

    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?

  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2012

    Hi - I did read that chemo (alone) not in combination with anything gives you a 1.4% chance of not getting a recurrence of breast cancer.  I will find it and post it here.  I don't know if it is true or not, but I did read it.  The highest percentage is for testicle cancer.  I believe you get 35% chance of not getting a recurrence with chemo.  But again, that is just chemo,not in combination with anything.

    I have major heart issues in my family and am 66 years old.  I am going to an alternative doctor in June and will discuss all my options at that time.

    Scared, yes I am scared, but I would be scared even if I were on Herceptin.  I would be scared of a heart attack when maybe by some miracle, the BC doesn't return for many,many years, which is possible also.  I do know of a couple of women who were HER2+ (the same ratio as me) and whose oncologist recommended no chemo and no Herceptin and they are okay seven years later.  There are no guarantees either way but I want to make the right decision for me,which may turn out to be the wrong decision or maybe I'll get hit by a car when I leave my home today. Just don't know and that is what scares me.  But then,none of us know what tomorrow may bring.  Wishing you all much health.

    Thank you all for your postings.  Barbie 

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