Hi there - Newbie with question

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bexybexy
bexybexy Member Posts: 151
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello everyone.

My name is Rebecca and have just joined here is really want to share my thoughts and feelings with those in a similar boat. I have just been diagnosed with DCIS intermediate. Am going to have a mastectomy and a reconstruction on the same day, date not set yet but should be quite soon. You can imagine this is a really scary time right now and still not taken it in.

The worse thing is I found a lump and then went for a mammo and ultrasound both came back negative. Then did a biopsy and was told it wasn't a tumour but would still need lump out. So was very relieved, had operation and then kind of completely forgot about it and started moving on with life until last night when I went back. I didn't even think I needed to go back thought it was just more of a formality. Then I was told and felt so shaky and panicky. The thing is from what I have looked at online, and from what the consultant said I shouldn't be as worried, and he said he was relaxed and confident, and that as it has been caught so early not to be concerned. He said they may test my lymph nodes but that having looked at the cells it was unlikely that they would of been affected but still my mind cannot stop worrying!!!

I keep trying to analyse why this has happened which I know is silly as cancer doesn't have any rhyme or reason. In the last 2 years I have become vegan, I was vegetarian for 10 years before that but then became lactose intolerant so decided being vegan made sense. However am very alarmed when reading stuff about soya milk. On the one hand we hear how great it is for lowering the risk of breast cancer, and how women in Asia who consume soya, tofu etc have low rates of cancer, and on the other I have heard claims that it can speed up cancer growth! Just don't know what to believe!

I use stevia to sweeten hot drinks which is a plant based sweetener, I have been buying it online but it is soon going to be available in shops. I thought I was doing the right thing as figured it was better than sugar, and have always heard that chemical sweeteners like aspartame are cancer related, but have now read that some studies showed stevia had been linked to cancer. It is just so hard to know who or what to believe and maybe I shouldn't be focussing on my diet in this way. It's just that it seems the only thing I can control if that makes any sense!

I would really love some advice, thoughts, input from anyone.

Many thanks xxxx

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  • Mandalala
    Mandalala Member Posts: 162
    edited November 2011

    Hi! I was wondering the same thing about soy, and reading around (didn't save the links though) I understood that soy contains plant estrogen, which lowers the risk by binding to estrogen receptors. To me, it sounds just like Tamoxifen.

    I have been using stevia, too, but I am uncertain about if I should go on with it. I suppose it's better than sugar, anyway, and it's approved in food in lots of countries. 

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  • xtine
    xtine Member Posts: 131
    edited November 2011

    Here is some info on the latest research on soy: http://latestbreastcancer.blogspot.com/2011/09/soy-vey-is-soy-safe-for-breast-cancer.html.

    Basically the advice I was given on soy by my doctors was to avoid soy supplements, but normal soy in diet (edamame, etc) was fine. I'm not sure how I'd feel about soy milk.. not something I drink.

    I don't use stevia or know anything about it... my personal philosophy is to avoid overly sweet food and drink in general.. it seems any kind of sweetener bites us in some way as research continues ;).

    I would really caution you against blaming yourself for this. So many women are here who did everything "right", and were completely blindsided by their diagnosis. So little of the research is conclusive, and even for the research that exists the risk factors from soy, alcohol, etc are relatively very small and certainly not strong enough where you can pinpoint a behavior that caused your cancer (i.e. there is no association nearly as strong as the association of smoking with lung cancer).

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited November 2011

    BexyBexy: Please don't blame yourself for getting cancer after doing all the right things!  The truth is that the medical community doesn't really know WHAT causes cancer and although we can use our best judgement and try to be as health conscious as possible, some of us will still get cancer!!!  The other thing that jumps to mind is that my lesion wasn't found with a mammogram, digital mammogram, ultrasound - it was ONLY found by breast MRI.. that MRI told the doc's not only about my lesion (although nothing is correct until they biopsy it) but also about my other breast.

    May I suggest that you add a therapist to you list of specialists.. so many people out there (even ones who love you) will have opinions that will pull you this way and that... but honestly you must learn to hear your own voices..  A therapist job is to help you filter out all those other opinions (even the docs) and hear your own thought, hopes fears and wishes...

    Also, please have your tissue slides reviewed by another independent group of pathologists - this will help you KNOW what you are dealing with.!

    I wish for you the best - take good care of yourself!

    Deirdre

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  • bexybexy
    bexybexy Member Posts: 151
    edited November 2011

    Many thanks people for your replies! You have certainly put my mind at rest in terms of blaming myself and I realise it is silly to do that. I guess I am clutching at straws really and still trying to make sense out of what is really a senseless situation. I don't smoke, drink rarely and am only a little overweight, which are all seen as factors when it comes to lifestyle and breast cancer. However there are people that are obese, smoke, drink etc and eat junk food that will never get any type of cancer. Who can say?

    I agree about the soya. I don't drink soya milk anymore as have found a really nice dairy free milk made using coconuts in Tesco and prefer that in my tea and coffee. I eat stuff like edamame and tofu, and have read soya isolate is not good which is in kind of soya processed foods like burgers etc so I stay away from them. I also heard supplements are not so good as maybe the amounts of soya are too high. It's like all things in moderation I guess. The stevia should be ok as it's theres going to be a new sweetener over here soon called Truvia which contains it. Then again I don't have a lot of sugar only in hot drinks so might stick with sugar but just have less. Anyone use honey to sweeten things? I know that is meant to be really good, only thing is I am not so keen on the taste!

    Thankyou again for all your kind replies I think the news on this is positive and keep telling myself how lucky I am to have noticed it early.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited November 2011

    I too have been very careful and ended up with DCIS in one breast, so extensive I needed a mastectomy, and I am having my other breast removed tomorrow because "something" showed up.

    So...I spend some time wondering where this came from? pesticides on the fresh veggies? Genetically modified foods? Or...I grew up in Philadelphia in the 60's where chemical plants were everywhere...we had an exterminator come every month to get rid of bugs in the house, crazy toxins everywhere.

     I am trying to say it is all much more complicated than eating the right foods...

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  • bexybexy
    bexybexy Member Posts: 151
    edited November 2011

    I totally agree with you there crystalphm, there are so many factors and it has never been proven any particular food that is definately a cause. I found a website called "food for breast cancer" with advice on good and bad food but it said that avacados and aduki beans should be avoided! Think I am gonna just go with my own common sense on this one. Can I ask if you don't mind Crystalphm you say you are having your other breast removed as something showed up have they said there is more chance of having something in the other breast after you have had DCIS in one breast? I was told there should be no link as it is on my mind, and part of me wishes they would just do a double mastectomy and be done with it but of course only if that is a risk. Hope it all goes well for you and thinking of you xxx

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  • fitzdc
    fitzdc Member Posts: 1,467
    edited November 2011

    Rebecca,

    Teresa here.  Like you, was recenlty diagnosed and am in shock, afraid, and overwhelmed.  My mastectomy is scheduled for Dec 1.  Now... I just wait.  I know that all will be fine - I have a supportive family to help out (even if they are in another state) and  great husband but I still feel very alone.  Like you, trying to control the things I can. Unlike you, not vegan nor do I use sweetner so trying to pinpoint the cause is an exercise with no answer.

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  • bexybexy
    bexybexy Member Posts: 151
    edited November 2011

    Hi Teresa sorry I hadn't checked back to see my replies to this post.

    Yeah I have given up trying to pinpoint the reasons as a great many vegans never get breast cancer and people can use artificial sweetener all their life and not have any problems! Think am just trying to come to terms with it. Good luck with your mastectomy I hope it all goes well for you and if you ever want to chat I am more than happy to talk to u xxxxx

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  • fitzdc
    fitzdc Member Posts: 1,467
    edited November 2011

    Thanks....T

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited November 2011

    Bexybexy, I had no intention of having a second mastectomy, my first one was 19 months ago with multifocal DCIS that the mammogram missed for quite a few years.

    Ok, so this September I had a MRI done, (I get a mammogram done every year and a MRI also, so actually it is a test every 6 months) and 3 areas showed up suspicious. I had to have an ultrasound biopsy and that was "inconclusive" so I had a MRI guided biopsy, which was very terrible for me. And 1 area still came back inconclusive. I terrorized myself, I was a basket case :-(  And a lumpectomy was to take place where I would have lost a part of my nipple.

    After consulting with my doctor, and a second opinion, we all decided a mastectomy with no lymph nodes removed was my best option. I work with my hands and while I only have 7 lymph nodes removed, I do have mild lymphedema in the first mastectomy arm.

    The mastectomy was drastic, but I couldn't deal with a MRI biopsy again, and the thought of waiting until I had to lose lymph nodes was too much for me to deal with. I am glad with my choices, a mastectomy with no lymph nodes is healing a bit faster, and I do not plan to have reconstruction.

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  • bexybexy
    bexybexy Member Posts: 151
    edited November 2011

    I think if my other breast shows anything suspicious I will opt for a mastectomy on that one too. Am going to start saving up for it it is horrible I feel cursed not knowing if my other breast is going to develop something bad its like living with a weight on my shoulders! I am glad you are healing and my best wishes to you xxxx

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  • Janie-bug
    Janie-bug Member Posts: 181
    edited November 2011

    Rebecca

    Janie here: I too have just been dx and I am terrified. I have also asked my self what did I do to cause this. My sister just lost her battle in April 2010. So I'm concerened that it may be genes. Im waiting on the BRAC test to come back. But I did read that 200,000 thousand women are dx with BC every year. Does that mean we are all eating "bad foods"  and dont' men eat the same foods. I don't know what to think all I do know is its a really "crappy" (can think of alot worse names to call it) disease. I was told 11/11/11. I have BMX planned for 12/9/11. There has been a millions things running through my head since I found out. What did I do/not do/should have done. Would anything have changed. I do understand how you feel. I just pray that one day SOON we will know more about what causes it so we can stop it.

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  • bexybexy
    bexybexy Member Posts: 151
    edited November 2011

    hi there

    I am so sorry to hear about your sister. That must be awful especially that you now have been diagnosed and I am keeping everything crossed for you.

    Honestly though I was looking at frozen foods the other day in the supermarkets and all the meat products like burgers, sausages etc had soya in as a filler. So we can't beat ourselves up over our diets don't forget so many people eat junk, drink, smoke and are obese and NEVER get cancer! Hugs hunnie am thinking of you -don't worry there are lots of people on these boards whenever you need to chat xxxxxxx

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  • lhasamom
    lhasamom Member Posts: 35
    edited November 2011

    fitz, good luck with your surgery!!!  I'm recovering from a masectomy with reconstruction.  The one thing that bugged me more than anything was the stupid drains!!!  My surgeon removed 9 lympth nodes also.  Don't let the hospital kick you out right away.  They wanted to release me the next morning!  Both my doctor and I said no way!  Also, get your doctor to request a private room for you.  As long as he puts it in writing, they will honor it and you won't be charged extra.  And ask for a second surgical bra too!  My plastic surgeon told me that!!  And let people take care of you!!!!

    And back to the drains,  they should give you something to hold the little "bulbs".  For some reason, I didn't get the little drain pouches, and it would have made such a difference.I could never get comfortable because they were always "pulling".  My Plastic surgeon told me about them, but he didn't have any at his office. Sigh! 

    Hugs to you!!! 

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  • texastoots
    texastoots Member Posts: 4
    edited November 2011

    Just wanted to tell you my experience. I found and have been working with a Registered Clinical Nutritionist since the week after my lumpectomy. It has been phenomenal to have someone on my side that understands the best foods and supplements for breast cancer patients. Most insurnace companies will cover it as adjuvant therapy. I was like you, thought I was doing things right, but I'm getting quite an education and realizing how many "good" things actually contained "bad" things. 

    My nutritionist has told me to avoid all soy. The studies that show the benefits of soy were done with women in countries that have real fermented soy, and not the processed stuff we have here in the US. Anything that's processed is then altered, and most soy milks have carregeenan-which is a Vaseline type product.

    I would also suggest reading-"Herbs, Healing & Cancer" by Donald Yance. It has a wealth of information about nutrition for breast cancer patients, for patients seeking traditional, holistic or combination treatments. 

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