Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #1 

Just dx with LCIS--anyone else?

onecent

Avatar / Picture

Goddess
Registered:
Posts: 158
Reply with quote  #2 
My name is Penny.
I was new here a few months ago and everyone was so helpful.
I didn't have your kind of cancer but I just wanted to say hi and welcome to the nicest place on the web.
Warmly,
Penny


__________________
I believe
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #3 

Thanks for the welcome Penny

csp

Moderator
Registered:
Posts: 1,940
Reply with quote  #4 
Hi Raine,
Welcome, and sorry you are here.
I was dx'd multifocal LCIS 9/18/07 . Just hop right in and ask what ever you want to know.

Hugs,
Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #5 
How do you cope with this LCIS cloud hanging over your head?  I fluxuate between relief and terror.

I really am having a hard time--imagining invasive breast cancer in my future.

Any words of wisdom would be welcome.
cowgirl

Avatar / Picture

Goddess Forever
Registered:
Posts: 712
Reply with quote  #6 

Raine I am a post DCIS girl but I am glad to see you here!


__________________
http://brazoscowgirl.wordpress.com/
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #7 

Thanks cowgirl, for the warm welcome

lizws

Friendship Goddess
Registered:
Posts: 1,424
Reply with quote  #8 
Hi Raine - sorry you had to join us but glad you found us.  I had lobular so can't really give you any advice.  There will be lots here that can help.  If there's ever anything I can do, just let me know.

Hang in there! 

Hugs
Liz

__________________
"I can be changed by what happens to me. But I refuse to be reduced by it!" - Maya Angelou
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #9 

Hi Liz, Thanks for the welcome.  I have lobular carcinoma in situ (LCIS ).  You too?

nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #10 
Hi Raine,
Welcome!
I hear you. I have to say that I think that LCIS is the most frustrating of all diagnoses.
A lot of doctors feel that while it is cancer confined to the milk lobes, it may or may not spread and so they look at it as a warning sign or a predictor, but not necessarily as a cancer that needs to be treated like DCIS which is more prone to get larger and break out of the milk ducts and become invasive. Lobular cells can just hang out there forever and not cause any trouble.


But what does that mean for you?

One thing to keep in mind is that there are drugs that are not chemo that you can take to help lower your risk of it ever spreading or coming back. These are the hormonals you have heard of like Tamoxifen if you are pre-meno and Arimidex, Femara and Aromasin if you are post meno.

That is one way to coping with this. In fact, they have been studying it for ten years. Here is a study from 1998 about LCIS and Tamoxifen


ASCO MEETING: Tamoxifen Lowers Breast Cancer Risk In Women With Prior History

ATLANTA, GA -- May 18, 1999 -- May 18, 1999 -- New data from the landmark Breast Cancer Prevention Trial (BCPT) presented today at the American Society of Clinical Oncologists (ASCO) suggests that five years of prophylactic treatment with Roche Laboratories Inc.'s and Zeneca Pharmaceuticals’ Nolvadex(R) (tamoxifen citrate) may have a particularly significant impact on breast cancer risk for women with prior histories of lobular carcinoma in situ (LCIS) or atypical hyperplasia (AH).

"Our analysis shows that for women with a prior history of LCIS, five years of Nolvadex reduces the incidence of invasive breast cancer by 66 percent. For those with a prior history of AH, the reduction in invasive breast cancer is a striking 86 percent," said Dr. D. Lawrence Wickerham, clinical director of the National Adjuvant Surgical Breast and Bowel Project (NASBP), who conducted the Breast Cancer Prevention Trial (BCPT). "For the entire BCPT study population, we observed a highly significant 49 percent reduction in invasive breast cancers among women who took tamoxifen for five years."

Of the more than 13,000 women who took part in BCPT, 826 had a prior history of LCIS, a microscopic breast disorder that is restricted to cell walls in the milk-producing lobules of the breast. A total of 1,193 women in BCPT had a prior history of AH, an abnormal cell growth pattern in the breast that is not malignant. To date, the majority of patients with LCIS or AH have been treated by surgical excision alone.

"We know from epidemiological studies that the rate of invasive breast cancers for women with a prior history of LCIS is 13 per 1,000 patients annually, while for AH it is 10 per 1,000 patients annually,” Dr. Wickerham said. “Our new analysis of the BCPT data suggests that it may be important to consider prophylactic treatment with tamoxifen for women whose risk profiles include prior diagnosis and surgical excision of LCIS or AH.”

The LCIS and AH data from the BCPT Study takes on added significance in light of data from another NSABP study (B-24) reported late last year and discussed this year at ASCO. The B-24 study examined the effect of five years of tamoxifen therapy on cancer recurrence in women who had been treated for ductile carcinoma in situ (DCIS), the most localised (Stage 0) form of breast cancer. In the DCIS study, 1,804 women who had been treated with lumpectomy and radiation therapy between 1990 and 1994 were randomised to five years of treatment with tamoxifen or placebo. After an average follow-up period of five years, NSABP found that the addition of tamoxifen significantly reduced the five-year incidence of invasive cancer in the same breast by 44.8 percent (29 cases on placebo versus 16 cases on tamoxifen).

Additionally, the researchers analysed the occurrence of all new breast cancer events including contralateral (in the opposite breast) breast cancer and new non-invasive breast cancers. They found that the addition of tamoxifen reduced the five-year incidence of a new breast cancer by 31.7 percent (104 cases on placebo versus 71 cases on tamoxifen).

The course of breast cancer in a woman's body can be viewed as a sequence, or continuum. For most women, the pace at which breast cancer moves along that continuum is a function of how rapidly cancer cells grow when fuelled by the estrogen in her body. The LCIS and AH findings from BCPT together with the DCIS data from B-24 appear to present a consistent rationale for the therapeutic and prophylactic effect of tamoxifen.

Nolvadex has been available in the United States for more than 20 years. Nolvadex is now available by prescription to women 35 years and older at high risk for breast cancer as determined by the Gail Model Risk Assessment tool. In the BCPT study, the drug reduced but did not eliminate the risk of breast cancer and did not increase survival. Nolvadex is not appropriate for all women at high risk. An informed discussion between doctor and patient weighing the potential risk and benefit of Nolvadex is essential before beginning therapy.


So there are things you can to do protect yourself. You need to have a good talk with your doctor and remember, a SECOND OPINION is always a very good idea. A good doc doesn't mind you getting one, and insurance covers them.

I hope this helped you a bit!

Hugs,
g




__________________


WE WILL PREVAIL





csp

Moderator
Registered:
Posts: 1,940
Reply with quote  #11 
Hi Raine,
Very good information that Gina has posted. I hear you about the roller coaster of  emotions. I have had to have a excisional biopsy just about every 6 months. We each have to do what is comfortable for us. For me I am having a Bilateral Mastectomy. I have 1rst degree family history
with  a 20% risk of being positive for the Gene mutation waiting for the results of my study. Some think this may be a radical decision  I feel, for me it is prudent.
I was dx'd with ALH and ADH same breast, ALH and then
multi focal LCIS. I am just tired of the worry and the surveillance. I am here for you as you walk your journey.
 
 First, take a deep breath.  We are fortunate that we don't have to rush to make on spot decisions. I understand the deer in the head lights, and the feeling of when is the other shoe going to drop all to well. My first feeling was OH MY GOSH HURRY SOMEONE DO SOMETHING!
 
All you have to do right now is see an Oncologist, keep your appointments for your 6 month mammo and be diligent about your SBE while you research and decide what is best for you. I wish I could tell you
a way to stop that panick/relief cycle, I never did get over that . But I will hold your hand while you do.
 
Lv& Hgs,
Carrie
 

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #12 
Gina, thank you for the excellent information.  I agree that LCIS is frustrating because there is no treatment.  Have you tried Tamoxifen?

Carrie,  The thought of every 6 mo excisional would cause me to consider PBM too.  I would probably do the same.  My recent MRI was normal and for that I am grateful. I have a weak family hx (dads side 1 bc in her 50's ) and my surgeon said I should consider genetic testing anyway. Have you tried Tamoxifen? ( my question of the day )

I am grateful I found this forum and I appreciate all of you--I know you understand.

I will let you know how my appt with the oncologist goes today.

Raine
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #13 
Raine, how did everything go?

__________________


WE WILL PREVAIL





Raine3

explorer
Registered:
Posts: 8
Reply with quote  #14 
It went very well.  I declined Tamoxifen for now.  I'll think about it for a couple of months.  He was ok with that decision.

He mentioned diet, exercise and lifestyle changes are very good preventitive measures as well--I thought that was very cool!!!!!

No doctors 'till August!  Horray!!!!  Thanks for asking Penny.
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #15 
Raine that sounds like a plan!
 He is right, the latest studies have proven that exercise at least 5 times a week, can reduce your risk of cancer recurring by over 50%.
And it doesn't mean you have to run Iron Man competitions... you can walk, use a bike, I like to swim.... and remember, everything that you do is active adds up. My gardening can constitute a workout most days.

I can't do Tamox because I have a blood clotting disorder, so I can't give you any advice on it. But I am sure someone will chime in!

hugs,
g


__________________


WE WILL PREVAIL





cowgirl

Avatar / Picture

Goddess Forever
Registered:
Posts: 712
Reply with quote  #16 

Raine good idea to try something you are comfortable with first. Then you can see if there is any difference.


__________________
http://brazoscowgirl.wordpress.com/
csp

Moderator
Registered:
Posts: 1,940
Reply with quote  #17 
Raine,
I just wanted to stop by and say Hi. See how you are doing. Hope you are in a good place emotionally right now.

Hugs,
Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Raine3

explorer
Registered:
Posts: 8
Reply with quote  #18 
Aw Carrie,  Thanks for thinking of me.  I'm doing very well today.  I have my good days and bad days like everyone else.  Today was good!

And how are you?  Hope you are well physically and mentally--enjoying this lovely weather ( lovely in Maryland anyway ).

Again, thanks for checking in--it means a lot!
lizws

Friendship Goddess
Registered:
Posts: 1,424
Reply with quote  #19 
Hi Raine,

I'm so sorry I didn't answer your question before now.  I had invasive lobular.  I chose to remove both breasts and did expander reconstruction.  I'm coming up on my 3 year anniversary.  Wow!  Can't believe that one. 

Hope things are going well for you.  Remember to take care of you!

Hugs
Liz

__________________
"I can be changed by what happens to me. But I refuse to be reduced by it!" - Maya Angelou
csp

Moderator
Registered:
Posts: 1,940
Reply with quote  #20 
 Raine ,
I am in a organize and cleaning frenzy right now. I feel like I need to get things in place at work and home.
 
I am glad you are feeling good and you don't have another squish until August!
 
I agree with you 100 percent. Don't rush, think things over read, study up and do what is best for you .
 
hugs,
Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.