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csp

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Reply with quote  #1 
Thank you Gina for this forum
Love,
Carrie

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saying.. i will try again tomorrow.
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purplemb

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Reply with quote  #2 
First thank you G...

I know this is gonna sound bad, so please forgive me.....my rant for the day...ugghhh...

DCIS ... not really cancer hmmmmmm or pre cancer.... then how come I have only one breast?...  Seems the Stuff in every duct of my breast might have just as well been jello.... for all the concern once the deed was done....

I wish some wouldn't make so light of it... and that means Dr's too!!!

I feel I was lucky, and could have all of the cancer removed... no one mentioned it not being cancer until 2 years later!!!!

ok so sorry but I have been holding this in for four years...

thanks for letting me rant

hugs MB

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SoCalLisa

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Reply with quote  #3 
Hi..my right breast lumps had LCIS,DCIS and invasive ductal..that breast is gone..

My other had ADH , atypical ductal hyperplasia in the biopsy..that lump was taken out, but showed only hyperplasia..that was in 2002 and we are watching that one...


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Reply with quote  #4 
I believe DCIS is cancer and must be taken as seriously as any other type.
I feel that women who are dx'd with DCIS are lucky that it was found before it had a chance to become invasive, but I think they had the same ROTTEN luck all the rest of BC patients had just by getting the dx in the first place.

Socal, WOW. You had a smorgasbord of cancer!

MB- you have every right to vent! Vent away my friend!

Carrie, I think you should show this thread to your docs the next time they blow off your case!!!



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csp

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Reply with quote  #5 
DCIS , LCIS AND PRE CANCER LESION GIRLS UNITE!

My breast are a smorgas board of crappy scary dividing clusters
of  "it isn't cancer" cells and lumps besides the LCIS.

MB
 I would never make light of it. I know some do and I feel your frustration.

Lisa
 I had  LCIS ALH and ADH in the same breast.

 I Haven't had a doctor tell me We got it all yet.
 I thought my last biospy was normal. It is ductal hyperplasia
without atypia what the heck is that ?

hgs,
Carrie




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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
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Bren

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Reply with quote  #6 
Carrie,

Here's another link that I found interesting.  It sites numerous studies on DCIS, LCIS, ADH and ALH.

http://www.thedoctorsdoctor.com/diseases/proliferative_breast_disease.htm


csp

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Reply with quote  #7 
Thank you Bren,
When does you DIL go for her biopsy, I put her in our prayer circle.
You go this week don't you for your consult?

hugs,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
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Bren

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Reply with quote  #8 
Thanks Carrie!

Linds will get the call tomorrow about when the biopsy is scheduled.  I meet with my surgeon for my regular 3 month check-up on Wed.  I'm supposed to alternate with the rad onc, but since he said he cured me, what's the point in going to see him!  I had an all clear mammo in mid Dec, which was 6 months post radiation.  

Keep me in the loop with what's going on with you.

love you and think about you,
Bren
csp

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"The authors conclude sclerosing adenosis represents an independent risk factor for subsequent invasive breast cancer apart from its association with ALH, and the risk (excluding patients with coexistent atypical hyperplasia) is in the range of 1.7, times thereby justifying inclusion of sclerosing adenosis as a component of a group of histopathologically defined lesions termed "proliferative breast disease without atypia" which implies a relative cancer risk of 1.5 to 2.0."

Bren I swear my boobs are trying to kill me!
here is my first path report I was 47 at the time

Well developed Atypical Lobular Hyperplasia with ducal involvement by cells
of Atypical Lobular Hyperplasia: Focal Atypical Ductal Hyperplasia; Papillary
Aprocrine change, Sclerosing Adenosis
 
I ignored some of the other changes because (A) NO ONE TOLD ME and
(B) I was focused in on having ALH and ADH in the same breast.

Then fast forward to age 48 another biopsy and a  path report with  ALH   and Sclerosing adenosis . Then in Jan at age 49 I think the Multifocal LCIS with microcalsifications in the same damn breast.

Why don't they tell you about this stuff. If I had never been on a breast cancer site and did not ask questions, I don't think anyone would have offered information? Why not? I have first degree family history.No one has
ever told me that SA was a risk factor. Is it the insurance companies, what?

Thank you Bren, this makes me even more determined to move forward.

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
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Bren

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Reply with quote  #10 
Carrie,

I don't know why they don't explain it all to us.  None of my doctors ever mentioned the DCIS or LCIS on my path report.  Just the IDC tumor.  Now, a year later, we'll talk about it this Wednesday. 

All I can figure is that must be why they were ALL so insistent I take Tamox or an AI and were so upset when I quit due to SE's.  Like I said, the only one not concerned was the rad onc, but he cured me!!

It's a dirty shame we have to be so vigilant about our own survival when we're freaking out about breast cancer!!
Bren

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Reply with quote  #11 
Hi Carrie and all my "CIS" buddy's,
 
I saw my surgeon today. He said I've healed beautifully, better than most of his patients!  I still have to be seen every three months for at least another year. Next time he wants me to see either the rad onc or the medical onc.  Think I'll see the medical onc in July.  I really like him and have only seen him once.  They are getting a brand new and fancy MRI machine at the hospital in November and when I see the surgeon in October again, he's going to schedule me for an MRI.  I've never had one before and he thinks it will be a good idea at that time. 

He was happy I was back on the Tamoxifen.  He wants me try hard to stick
with it.  I'm up to 5 mg a day.  Whoopee!  With no nausea or vomitting!! There's no real evidence it works with LCIS, but it sure can't hurt with the other stuff.

I didn't talk to him about PBM's.  Actually, I forgot to.  I'll talk to the
medical oncologist in three months and get his opinion.  BTW, he's the one that Edge consulted with for Mike.  So I know Dr. Sleeper is a good doctor, besides being really nice and kind.  Probably wait until after the MRI in November and see what's going on at that point. 
 
I wish I had my biopsy results from 5 1/2 years ago.  I wonder if there's any way to track those down.  Think I'll call the imaging center in San Diego.  Be interesting to see what's on that report, since they left a chip in there to mark the spot, and my cancer was found near the chip. 
 
Let me know what's going on with you.  I think about you everyday.  I can't imagine how hard this is for you.  I know that my family will back me up no matter what and Tim has said he's with me all the way .... too bad he won't give me that damn remote when he's home!!
 
love to all the DCIS and LCIS gals!!!
Bren

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Reply with quote  #12 
Checking in with the "CIS" gals!
 
My DIL's surgery is Friday the 23rd.  The doc thinks its a fibroadenoma about a cm in size, by U/S.  It's next to her chest wall on the left side near the armpit.
 
I've seen my PCP since that last visit with the surgeon, which did nothing for me or my state of mind.  I've pretty much turned my care over to my PCP.  I can trust her and she takes good care of me.
 
The Tamox (the second time around) makes me sick.  I'm going to give up on it again.  Yes, it's scary.  And I'm pissed about it.  But, I'm sick of being sick all the time. I can't take Arimidex either.  I tried.  
 
I've decided to wait until I have my first MRI in November/December with the fancy new MRI machine at our hospital and see how things look. I think I'm supposed to have another mammo in June as well. 
 
Since I can't take the Tamox, my first line of defense on the LCIS, I'm a little nervous.  My docs don't seem too worried about a damn thing.  The whole reason I saved the boobs is shot ... the lumpectomy and radiated one doesn't work right anymore anyway.  It's always sore and I'm 10 months out of rads and 14 months out of surgery and SNB.  
 
I wish I could let go of the obsessing.  I haven't had any peace at all with any of this since I first tried AI and Tamox last September and then discovered the LCIS on path in late December. 
 
Love to all,
Bren

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Reply with quote  #13 
Bren,
That is what makes me that maddest. No patient I know that has DCIS or DCIS and other stuff is ever told the reality. If didn't have an aunt that had a reoccurance of DCIS after IDC and a double mast I would not have known anything.

One of the reasons they blew you off is because at that time they thought Tamox was a "cure for all DCIS". Talk to my mom with IDC two years after finishing five years of Tamox. Bren Tamox is a chemo drug, it does make you sick and weak. It is real, I remember my mom's hair would break off with it. Now she has so little hair.

Then again and again I see women with DCIS and lumpectomy thinking that Tamox, lump and radiation has them completely clean. But then I think of my mom and my aunt, it only takes one cell of cancer to make a cancer.

I am praying for you Bren! You are in a vicious cycle!

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Reply with quote  #14 
Oh boy all these stories make me so mad! DCIS, LCIS need to be taken seriously. I am sorry you are going through this.

Bren, have you tried Femara yet? You know I am Miss Side Effect. But it has been OK with me so far. I don't know if it is the vitamin D or taking it at night or what.

I am sending you a big hug,
love,
g


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csp

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Reply with quote  #15 
Bren,
When I went for genetic testing they asked me if I was
basing my decision for the bilat on the results and I said
NO. I was ready for another comment about it being a radical decision. But instead the Dr. came in and said
"Good for You" Getting off the surveillance roller coaster?
I said yep. She told me that with the first degree family
history and the LCIS I was ten fold as likely to develop
an invasive Breast Cancer.
 I worry about how many ladies that just  don't know.

Carrie 

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
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Bren

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Reply with quote  #16 

Hi Carrie and Kathy,

The "surveillance roller coaster."  Yep .. I hear that.  I need to make an appt with the med onc for next month and get my 6 mo. mammo.  I'll talk to him about stuff then.  I can't believe six months have already gone by since my last one.

Maybe I should talk to him about BRACA testing.  The only b/c in my family was one of my dad's two sisters.  No ovarian cancer either, but we do have some colon, bladder and melanomas on his side though. 

I'm doing okay on the Tamox at 5 mg.  I'm going to try to get it back up to 10 mg.  Maybe every other day ... that way I'm only horribly nauseous half the time!!  How's that for having a half full glass!!!  Other than that, the only other SE is achy knees. 

Keep my in the loop with how you're doing and what's going on. 

Think about you all the time,
love,
Bren


PS - I did post to Edge and he gave me some good info about stats, etc. Not what I wanted to hear, but good info nonetheless.

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Reply with quote  #17 
Bren, I learned from my genetic counseling that it was my dad's side that they were concerned about. It doesn't matter whether it is maternal or paternal as far as the gene being passed down.
I hope you get this all resolved soon!


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Naniam

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Reply with quote  #18 
My Mom's family had no cancer - strokes there.

Dad's family - breast, bladder and stomach cancer.  More than one or two.
My aunt had BC, my grandfather had bladder cancer and another aunt had
a rare form of leukemia.  My sis has bladder cancer and I have breast cancer.

I also was in the first group of female to take the birth control pills.  At that time they were often 15-20 mg. tablets - each.  I also took Diethylstilbesterol to help get pregnant.  I had to answer questions on my first oncology visit and all of these questions were on the form but never
really got any comments - some of them are "felt" to be contributors of
BC.   

I think lots we do plus our heredity plays a big part in all of this.
crazydaisy

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Reply with quote  #19 
Hi Everyone
Hope I can join you ladies here.
Today is my one year lopitoff cancerversary.
I was Dx'd Dec 07, lumpectomy DCIS grd 3 comedo,4cm,er-pr-, 3 dirty margins.
Right breast mastectomy March 18
 
Ladies
I hear ya loud and clear! I was diagnosed after my very first mammo at age 49, calcifications seen on mammo.
I was totallt clueless even when they took me in for immediate US and then also sent for more digital views and another US at cancer clinic. It wasn't till I saw the surgeon after my excisional biopsy that things struck home. In one breath he said, "well the good news is you have the good kind of BC, the bad news is.......how do you feel about a MX!'.
 
I was blown away and didn't know what to say other than....can I have time to think about it?
 
I have learned what I could by researching myself and with support from others. I still try to learn what I can.
I never had the choice of SLN testing.....they don't do that here as a standard. That still nags at me. After MX pathology came back with no remnants of DCIS even tho after lumpectomy it came back with 3 dirty margins. I questioned this and was told that the tissue in the site shrinks so it was all removed first time? I dunno.
 
I have also found this a difficult type of cancer to deal with due to the controversary about DCIS. At times it makes me fearful to even say I had BC because of how it is viewed. I feel marginalized at times and don't know where and how to express what happened to me.
 
Today it has been one year since I lost my breast. I don't say that too loudly or openly except here. I don't know anyone close to me who has had to go thru this and I don't belong to any clubs except this place and another. It's hard to be alone out in my world without anyone to share, that's why I thank you ladies for being here and for this site.
 
Thanks for being here!
nosurrender

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Reply with quote  #20 
Daisy, Hi!

I know that many DCIS and LCIS girls feel marginalized and it is not right.
It is still cancer, it is devastating and it is frightening.
I know many women are dx'd with more advanced stages, I was one of them, but that in no way diminishes what you are going through.

Our Carrie has been through the ringer with her mixed diagnoses.

I am glad you all have a place here to talk about this.

Welcome!


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