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Topic: help! newly diagnosed or not?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Feb 20, 2008 04:16PM

amb63 wrote:

My journey seemed to start on Jan 16 when I went in for my annual mamo.  They found microcalcifications.  three radiologists conferred that I would need a needle biopsy.  (that was a plesant experience ha)  After 7 days I received my results from my family dr.  He referred me to a breast surgeon and an oncology group.  my path report states atypical duct hyperplasia, lcis, and firbrocystic changes with microcalcifications.  Before I saw the surgeon I did read up on this site about path report and I was not overly concerned.  since everything pointed to precancer.  I have absolutely no family history of cancer of any kind.  I am 45.  I was not sure why I was even going to see a surgeon.  I stated this to the nurse that called me to confirm my appointment with the surgeon.  In a very intimidating way she informed me that I had breast cancer and the surgeon would need to do surgery to see what really was going on.  Needless to say this freaked me out.  When I actually saw the surgeon a week later she states I do not have cancer but an increased risk for it someday.  She says she wants to perform a lumpectomy(I do not actually have a lump) to make sure.  She seemed very reassuring and calm and let me know that she wanted to give me a black or white answer instead of the gray area I am in.  At that time I asked why had I not had a mri which is obviously noninvasive.  She said I could have one and then the lumpectomy.  That was last week and I have just now finally heard from the mri dept.   I am to have the breast mri on March 3.  We have put the oncologist on hold for now. 

After reading the comments here I feel like I am not alone.  I try to maintain life as normal, 5 kids, husband and my own business, but I feel like going crazy.  Has anyone had this kind of experience?  Most people say oh you probably have precancer, nothing to worry about.  So what?  I will have 10 good years and then get cancer anyway?  I must say I am usually not one who worries about stuff, and I am never sick.  I have always thought one should be upbeat and optimistic.  But I think I am just plain scared. I am sorry to whine so much, I know others have it far worse.  I would appreciate any feedback

thanks 

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Feb 20, 2008 05:22PM Kimber wrote:

Hi there,
ADH, LCIS, fibrocystic changes, and microcalcifications are all reasons (in my opinion and after my experience) to have a surgeon get some more of your cells under a microscope. Right now you have a Stage 0 cancer and they want to be sure you don't have something more serious going on. I did not actually have a lump either, most of the things you describe do not always present as a lump.

It is probably a good idea to have an MRI of both breasts, however you already have a biopsy that has shown some concerning things and it may be best to keep your surgeon and oncology appts and follow up with them after your MRI and see if something needs a closer look. Be happy that your mammogram caught this stuff early and you can be preventative in your treatment. Your MRI results should be ready for you to pick up within a matter of 2 or 3 days. Have an appt set up with your surgeon right away in that timeframe so that you can move forward and not play the waiting game. That is the worst part.

Good luck to you,
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 20, 2008 06:09PM Peaches70 wrote:

amb63,

What you are feeling is perfectly normal. You have fallen down the rabbit hole into a world of questions, semantics, and controversy. Before this all happened, you probably thought of your mammograms as uncomfortable inconveniences, but didn't really think that anything scary would ever show up. Then when you did get some "interesting" results from that biopsy, you did your homework and thought you had it all together. The nurse's rather blunt way of expressing things has you reconsidering your comfort level.

Whenever there is a finding of LCIS, most doctors follow the protocol of excisional biopsy (or lumpectomy, although, you're right, it isn't really a lump) to see if the LCIS is the only nasty hanging around in there. That's because LCIS is often found when other worse things are found. It doesn't necessarily follow that worse forms of carcinoma will necessarily be hanging around your particular LCIS. By checking the area a little more thoroughly, your doctor may be able to ease your concern. If "nothing worse" is found, welcome to the club. Then you have to determine which course of action you want to take, but you don't have to rush into anything. Take a deep breath and try to find something to keep your mind occupied until the surgery. It won't be easy, but you can do this.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Feb 20, 2008 06:32PM Kimber wrote:

I agree with Anne, you can do this. My LCIS was not hiding anything else, and I get to breathe a lot easier after a long journey. You already have a surgeon and an oncologist and an MRI lined up, so you are already ahead of the game. We all think we cannot handle our lives, our kids, our husbands and our jobs, but we all manage, somehow. Come here as often as you like or you can. You will get a lot of support and help. The good news is, nothing you have been diagnosed with thus far is an emergency and you will know a lot more after your MRI. Focus on your kids and your life - they all need you as much as you need them. I know it sounds easy to say, but good thoughts will get you through this.
We are here any time,
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 20, 2008 07:02PM RoseDew1951 wrote:

I understand where you are...I was diagnosed with ALH and LCIS in December after having a core needle biopsy due to a "suspicious" finding on my mammo. The results of the needle biopsy showed "atypical" cells which lead me to have an excisional biopsy because I wanted to attack head-on whatever was inside of me. The excisional biopsy lead to the discovery of the LCIS, a precancerous condition, while the "suspicious" area was nothing. So, in a way, I consider myself one of the lucky ones who at least will now be watched more closely. The surgeon told me that my options were watch closely, watch closely and take either tamoxifen or evista, or mastectomy which he wasn't recommending at this point in time. I've met with an onc, my family doctor, as well as a cancer nutritionist. While I think about this situation daily, it hasn't paralyzed me nor will it; my risk of getting invasive cancer in the future is 25%, but as my doctor told me that also means I have a 75% chance of not getting a cancer. The possible side effects of the drugs versus the limited benefit of the drug will probably keep me from taking them. For now, I keep my focus on my otherwise good health and have modified my diet somewhat and increased my exercise habits. My theory is that if I get cancer, at least I'm going to go into it with an otherwise healthy body. Good luck to you. As everyone else says on this board, you have to search your heart and soul and decide to do what makes the most sense to you.

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Feb 20, 2008 11:28PM awb wrote:


amb--there are definitely a lot of "gray areas" when it comes to LCIS.  It is technically a stage 0 in-situ breast cancer, but  many in the medical community just view it as a marker for higher risk of invasive bc in the future. I think this is because of its' relative low potential for invasiveness (about 5%--as opposed to DCIS which is about 50%) and also due to the fact that they just don't know enough to really be sure of anything about it.  LCIS is usually an incidental finding when they're in there looking at something else, either during biopsy or surgery. It's uncommon to find it by itself without an invasive component along with it, but it seems that they are detecting it more often now with the newer digital mammos.  More important than what it's called, is that it warrants very close monitoring and generally tamoxifen is what is offered as preventative medication (and some docs are now advocating use of evista as another option).
  I was diagnosed about 4.5 years ago, had lumpectomy, take tamoxifen and am very closely monitored with mammos alternating with MRIs every 6 months now.
 While we with LCIS don't have to have the "bad stuff" like chemo and rads, we do have to go thru the biopsies/MRIs/mammos/US/surgeries/ hormonals and their SEs/ waiting for test results/ and the anxiety and worry that goes with a disease that is so unpredictable--so we have our own set of special issues with being high risk.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Feb 21, 2008 02:25PM - edited Feb 22, 2008 08:29AM by leaf

hi. I just had hand surgery on my dominant hand so that's why my posts will be weird.

LCIS without anything else is an unusual diagnosis. No one knows how many women out there have LCIS and don't know it because it is usually only found on biopsy, and not everyone has a biopsy. For my age group (I'm in my mid-50s) one paper opined the incidence was about 1:10,000women-years.

LCIS puts you at higher risk of ILC, the 'sneaky one'.some papers say that about 40% of the invasive cancers that LCIS women get are ILC, as opposed to about 10% incidence of the 'general' population. ILC often forms sheets and not lumps.

They generally do excisions to make sure there isn't something worse going on. In roughly 10-30?% of cases where LCIS and nothing worse is found on biopsy, they find DCIS or worse in the area after excision. So statistics are with you they will not find worse.

I sometimes circle both yes and no to the question have you had cancer, or else circle no. I usually have to spend 5-10 minutes explaining myself.

Almost everything in an LCIS diagnosis is controversial, from the name, to what is the risk it imposes for breast cancer, to treatment, monitoring. The range of risk quotations I have gotten range from 10% (ie no extra risk from the average population) to 85% (in a risk calculator that has NOT been compared to populations.) I have LCIS, ALH, DH (ductal hyperplasia) and a weak family history. I was told at a major institution I should not have MRIs as I have 'too much scar tissue'. Others with a similar diagnosis here I think have had bilateral mastectomies recommended.

The most supported figure I could find is about 1% incidence of bc (or DCIS) per year. This may be halved with tamoxifen or AIs.

Welcome to our little group.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 21, 2008 04:12PM amb63 wrote:

Thank you all so much for the guidance and pep talk.  I feel so much better today and for now have decided to concentrate on what I CAN control.  I was feeling very frustrated with the waiting and the contradictions.  It really is nice to have someone to talk with.  It does seem to be ever present on the mind but will do my best to push it away. Thanks again you girls are the best

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Feb 22, 2008 12:50AM - edited Feb 22, 2008 12:57AM by df2210

I am glad to find this support group as I was diagnosed with LCIS in mid-December and can identify with your feelings, amb63. I had an abnormal mammogram (microcalcifications), had a stereotatic biopsy and was diagnosed with ALH. The radiologist then recommended seeing a surgeon to have an excisional biopsy and after that I was told I have LCIS.  The oncologist prescribed Tamoxifen, although I have very conflicting feelings about taking it (I've been on it for 3 weeks.) Any information anyone has heard about the risk of developing cancer would be appreciated. My oncologist said the risk of developing cancer ranges from 3% to 35% and I've seen all kinds of other ranges. I'm 49 yrs old. Best wishes amb63 - I know what you're going through.

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Feb 22, 2008 08:25AM - edited Feb 23, 2008 06:00AM by leaf

hard to type accurately. u may find this helps:community.breastcancer.org/top...


info on the Port paper



To summarize, there were a total of 14 patients (out of 126 AH patients + 252 LCIS patients) in which breast cancer was discovered in this 6 year time span at Sloan-Kettering.


Clearly, in this study, LCIS women had a higher incidence of bc than AH patients. 11 out of 14 of the cancers were found in LCIS patients. (Note there were more LCIS patients than AH patients.) Two of the 14 women had a known first degree relative with bc. In one additional patient, the family history was unknown. The remaining 11 patients did NOT have a first degree relative with bc.

To me, this data does *NOT* strongly support the idea that family history confers a much higher risk versus a negative family history overall (MRI screened + non-MRI screened.) 2/14=14.2%, which is approximately the incidence of breast cancer in patients with a 'bad' family history.



There were 7 non-MRI screened patients in whom they found breast cancer. 5 of these women had LCIS and 2 had atypia. Their age ranged from 50 to 88. 3 out of these 7 patients took tamoxifen. The stage ranged from I to II. None had a known first degree family member with bc. (6 had no first degree family history, and in one the family history was unknown.)

Of the 7 MRI screened patients who developed cancer, age range 43-57, none used tamoxifen. One of these 7 had atypia. In this patient, the cancer was discovered via a palpable mass after recent negative MRI and mammo. The other 6 had LCIS. One of these 6 LCIS patients, who had a first degree relative with breast cancer, was found to have cancer incidentally on risk-reducing mastectomy. 5 of the 7 patients with cancer had NO first degree relative with breast cancer. The stage ranged from 0-1.


community.breastcancer.org/top...
Using the raw data here I get about 1% per year incidence in this population (for LCIS patients.)

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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