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Micro-invasive DCIS that is her2+++

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  • shelleydodt
    shelleydodt Member Posts: 6
    edited April 2010
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    Hope you are feeling better by now. When I hear about all these stage 4 with brain mets, I feel very fortunate. I tired 1/2 tablet Lexapro and clonapezam 1 table a day and this seems to keep me on an even keel and happy. It is a big shock to get BC, even DCIS. Just remember it is only a mm problem in your body! My doctor says that BC and skin cancer are related so be careful in the sun. The Vitamin D3 is really protective. Since I have taken it I have hard nails for the first time in my life. I take tumercic too for extra antioxidant protection and green tea. We are the lucky ones. See our website at pennies in action.org if you know of anyone interested in a vaccine. That is what i did, i was afraid of other bad cells circulating around and wanted my immune system to be able to kill them. Lucky for me, I found the trial and it worked for me. Good luck and don't feel blue, this too will pass!

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    Hello all!

    I have some good news to report today. I saw my PS this morning and got my 3rd (and I think final fill) and he told me that he thinks I can schedule my surgery for June! I am so excited!! I really thougth it would be July or August. Looks like I might get some swim suit time this summer after all. I can't wait to be able to wear normal clothes again. I feel so awkward with the TE's now.

    Another bit of good news... I had my Vitamin D retested last week and I'm up to 48 from 19 in January. I've been taking 4000 iu a day so I'm going to continue that and retest again in a couple of months. I'd like to get it higher, but I'm pleased that it rose so quickly.

    My GP gave me something to help me sleep so that it getting better too.

    Still feeling really sad sometimes, but overall things are improving and I am happy about that.

    Hope everyone else is doing well!

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Hi Imnop, I am so happy for you,  I know how you are feeling believe me! I have my first  3 month onc appt. next monday, feel fine but have a lot of anxiety. My husband says to just look at it like it is a regular checkup   I am going to try...wish me luck! Hope everyone is well...getting used to my new softiesWink....LOVESSSSSS to all

    Laura xoxo

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    Laura,

    Are you being followed by your onc and your surgeon? I got the impression from the oncs that they don't feel like they have any need to see me. I know Liz said she sees 2. I have an appt with my surgeon on Wed and plan to ask her if she feels comfortable being the only one following me. I don't know that it makes any difference, but we'll see. I'd love to know how your appt goes and what you feel like you'll get out of seeing the onc.

    Good luck and I'm sure it will be fine.

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Good question, my surgeon was the one who told me the schedule of seeing her every 6 months and the onc every 3. It could be that they are interchangeable. I think I will know more when I see her. I guess its just the fact they "they" were the ones who said they wanted to see me on this type of schedule that bothers me, and I know that Liz and Amy both see an onc(I believe) I think Amys is every 6 month as opposed to Liz and I on 3 month. I think it varies. But for sure no matter how you slice this pie it isn't any funYell. Let us know about wed and I will try to ask all of my questions for next Mon...I have a listLaughing L:)
  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Good question, my surgeon was the one who told me the schedule of seeing her every 6 months and the onc every 3. It could be that they are interchangeable. I think I will know more when I see her. I guess its just the fact they "they" were the ones who said they wanted to see me on this type of schedule that bothers me, and I know that Liz and Amy both see an onc(I believe) I think Amys is every 6 month as opposed to Liz and I on 3 month. I think it varies. But for sure no matter how you slice this pie it isn't any funYell. Let us know about wed and I will try to ask all of my questions for next Mon...I have a listLaughing L:)
  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Hey liz, How are you? I was wondering what your feeling was on flaxseed, do you take it? I have been reading different info on it...I know it is a pyhtoestrogen, but because I am er- pr-does it matter, just looks like good stuff! Hope you are wellWink

    Laura xoxo

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Laura-

    all is well, just super busy but I wanted to respond.  My naturalpath told me to stay away from flaxseed and soy, even though I'm er- pr-.  A little here or there is OK but not on a regular basis.  Hope all is well,

    xoxo,

    Liz 

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Sounds like things are going really well for everyone all around  :)  I found a lot of conflicting information on flax and soy.  Some say they prevent and some even say they can cause BC!  It's a very controversial topic.  Even though I'm slightly er, pr+, my onc said the same as Liz, "Once in a while is fine."  Wishing everyone peace and happiness... amy   

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    Hello all!

    I had my first follow up today so I wanted to let you know how it went. It was my one month check-up with surgeon and we talked about the fact that neither of the oncs thought I should follow up with them and that I should only follow up with her every 6 months. She said that was fine with her and that we really didn't even need to do it every 6 months, we could do it annually if I wanted to. NO! I don't want to do that. So we agreed on 6 months, with the option to change that at any time. She said all she would do is a physical exam and to track symptoms. The oncs weren't going to do any more than that anyway, so I guess it's not a big deal. I guess I could find a more aggresive onc, but do I really want the stress of bloodwork, etc every 6 months.

    I also found a "functional medicine" doctor in my area that I may go see. They say they do a lot of work with cancer patients both during and after treatment. I think they mainly work with nutrition, but if they are knowledgable about its impact on cancer, I guess that what I'm looking for anyway. They are pricey, but I think I can file it with my health insurance, or at least use my flexible spending money on it. I somehow feel like this will be something proactive I can do rather than sitting around worrying for the next 5 years.

    Hope everyone is doing well Smile

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Great news Imnop!  My onc also suggested the annual idea.  She said if we were really anal, we could do every 6 months.  I felt much better about the 6 month idea!  In a way, it makes you feel a little at ease, doesn't it?  I mean, because they don't seem too terribly worried about things, you know?  I had a CT scan of my sinuses this week and it turned out normal.  The sinus pressure behind my right eye has been worrysome, even making my eye all puffy and my vision unfocused.  I guess it's just allergies.  I'd like to have some allergy testing done to figure out what foods to avoid or what exactly it is that is causing the flare-ups.  Not sure if insurance will cover that...  I'm slooooowly getting used to the implants.  I can't wait for the next step - nipples in June.  I bought some stick-on nipples from Reforma.  They look a little silly, but through a shirt, I feel almost sexy!  And not too bad in very dim lighting either ;)       

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Okay stick on nipples.....I want in!!

    Laura xoxo

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Okay stick on nipples.....I want in!!

    Laura xoxo

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Laura~  Go to www.reformawomen.com.  They are having a sale!  They should be covered by insurance (there is a section on their website), or your PS might have a discount code - saves you about $5.    

    Liz~  I tried getting a coupon code for the Zyflamend, but haven't been successful.  Any ideas?  I am eager to have my husband take it, too, since his father had prostate cancer.  It certainly has gotten rave reviews! 

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Amy-

    initially I got the Zyflamend at my naturalpaths and I paid a premium for it.  After that I have been buying it on line from www.swansonvitamins.com. or www.luckyvitamin.com or you can go to a local vitaminshoppe or www.vitaminshoppe.com. If you go to a local vitaminshoppe you may want to print out the on line price since it tends to be cheaper then at the store and they always have honored their on-line price for me.   For Swanson Vitamins, many times I'm able to find a coupon on line when googling but not always.  Just last week I got a coupon in my e-mail for Swanson but it expired on April 20th Frown.  I will be ordering more Now  and Zyflamend supplements shortly, if I come across a coupon, I will forward it to you. 

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Thanks Liz!   I just checked out your post about Zyflamend on the Alternatives forum, too.  It takes a lot to convince me sometimes, but I'm ready to give it a try.  With so many people out there pushing their "snake oil" to make a buck, it's hard to trust anyone.   Honestly, I have not gone the supplement route as of yet.  I'm sure I deserve a slap on the wrist for that, but I have been making such a huge effort to eat extremely healthy that I feel I'm getting enough through my food.  I know, I know, it's probably still not enough....  Well, you've convinced me to try this, with or without the coupon.  Thanks for sharing all the great info.  You are a dearSmile

    Laura~  Don't worry about your onc appt.  He will most likely just take your temp, blood pressure, listen to your lungs,  feel your armpits, and send you home.  I don't think just because they want to see you every 3 months that means there is anything to worry about.  Like you said earlier, it varies.  One of my oncs said every 3 months, too.  It's a matter of preference and money (probably).  Good luck on Monday.  By the way, how do you like your implants?             

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Hey Amy sweet, Okay your right, just because they want to check really doesn't mean anythingSmileI think I just need to get the first one over with. And I also wanted to tell you, I am very skeptical about supplements(for a lot of reasons) and I to have been slow to act. I am taking some regular things like vitamin D and stuff and actually also am taking the one low dose aspirin...WHO KNOWS!!! Okay my implants are definitely softer.......BUT different, I know you know what I mean. I am actually a little afraid to be touched there, feel like they might pop or something, kind of funny but I'm serious. Intimacy is definitely on the learning curve with these suckers, but I have hope that after nipps in July, I will feel like myself! My hus doesn't have any problem in the world..I Love him...its me. But you know what, I am so glad I opted for something, How do you like yours?!Wink
  • amyob
    amyob Member Posts: 56
    edited April 2010
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    This too shall pass, right?  Well, I'm trying really hard not to be negative about my implants.  They look pretty good, I guess.  I mean, I don't know what I was expecting, but this is definitely different.  They are quite far apart and are slightly different shaped...I think because of my incision problem after the first surgery.  They do look very nice in a bra, though.  I was actually surfing the discussion board and the internet for info on reconstruction when your message popped up.  What I have found is that it seems to take most people a bit of time to get used to them and that they need to settle before revisions can be done.  My PS said he could touch-up when he does the nipples.  Compared to some of the photos I saw of reconstruction gone bad, I feel very lucky.  I think I will also feel much better when I have nipples!  This is hard for me to say, but I have been feeling really depressed about my husband not wanting to look at or touch my breasts.  Last night I asked if he would want to after I get the nipples, and he sweetly said yes.  I hope there is light at the end of this tunnel.  I just want to feel normal again...     

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    you know what, there will be light...PROMISE! And also maybe he also needs that processing time like we do, I think it has been a shock to see your wife go thru this in the first place and then to have this....TRANSFORMATION, so to speak! I personally think my hus was a little shell shocked at first, but give each other time, he certainly loves you, not your breasts, right!! And btw, could you please send some sun my way...its been snowing all day....UGH winter in spring, gotta love co

    Laura xoxo  btw, where do I find the pics of recon, I tried to find them once?

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Thanks Laura.  I really needed to hear that!  As for the photos, surfing the web was pretty awful.  I sent a PM to Timtam in order to gain access to her website.  She keeps it private to protect those who were photographed.  I know she had surgery recently, so not sure how long it will take for a response.  I wish I could send you some sun, dear, but all we have is rain.  I managed to get the grass seed down this morning before it started, though!  Thanks again for the support Smile  Maybe I just need a pair of those sparkley nipples.  LOL 

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Ok, here's the scoop on the bc picture forum.  It is not related to bc.org.  In order to access the site, you have to personally PM Timtam yourself.  I heard back from her and am now awaiting validation from a site administrator, which may take a couple of days.  It is very private and they want to make sure it stays that way.  Hope everyone is staying warm and dry :) 

  • kawee
    kawee Member Posts: 21
    edited April 2010
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    WHAT!!!!  I've been gone for a couple of weeks, just got back and was reading your posts.  NO FLAX SEED!  Say it isn't so.  I have been using flax seed meal every day for years.  It's the only thing that keeps me, well, regular.  I knew about soy, but not about flax seed.

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    kawee~  There is a great discussion about flax in the High Risk Women forum.  The name of the topic "Is flaxseed bad for BC survivors?"  It seems that flax probably does more good than harm, but because it is a phytoestrogen, people have become afraid of using it.  Along with the soy issue, it is still very controversial.  I think reading the discussion will put your mind at ease.   

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Well here I am, in one piece, survived my onc appt. I am in shock, she feels she doesn't need to see me for 6  MONTHS, instead of three, I am pretty excited!Smile I just wanted you all to know since this as been a discussion of late...Hope everyone is well!

    Laura xoxo

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Great news Laura, thanks for sharing Kiss!
  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    So Laura, what did the appt consist of? Was it just a physical exam or did they do bloodwork?

    I'm thinking of being followed by an onc instead of a surgeon. That way at least I can ask questions about medicine, food (like the flax seed issue), etc.

     I'm glad to hear you survived Smile

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    kawee-

    to keep yourself regular, try the Calcium/Mag Citrate with vitamin D3.  I buy mine from Vitaminshoppe and have used it for years for the many health benefits including keeping me regular. I take 6 capsules a day in divided doses of usually 2 with each meal.

    Here's the link on the one I use.  You may have to copy and paste it into your browser.  

    http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=VS-1087

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Hey Imnop, just a physical exam, chest, armpit, just basically checking me out I guess. She did say to stop worrying about that it was Her2 pos, because it was caught so early, I need to try to move on with my life...well I KNOW that, easier said than done...Frown

    Laura xoxo

  • lisa34lisa
    lisa34lisa Member Posts: 32
    edited April 2010
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    That's what my original DX was.  Now, 2 years later...it's stage IV.  Good news for you is that it happens to only 1 out of 100, and I was the 1.  :)  You should be good to go!

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Hi Lisa-

    I'm so sorry that you fell in the 1 out of 100, I wish cancer never existed.  I sent you a PM with info on another forum specifically for those who are her2+++.  There are an excellent resource for stage IV who are her2+++.

    Since there is a lot of confusion about "microinvasive DCIS"  I just  want to be sure of your DX; you were originally at stage T1mic which is a microinvasion of 1mm or .10cm or less in its greatest dimension?    Any invasive component over.10cm or 1mm is not considered microinvasive. Just want to be sure since some members on other forums were confused and have considered 1cm or even .5cm(5mm) microinvasive but that is separate pathlogic category when it comes to her2+++ tumors and according to NCCN guidelines would require chemo/herceptin.

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