Topic: LCIS + excision

The increasing discoveries of LCIS (thanks to better mammography technolgoy) has opened a real controversy in the breast cancer field.  My first reaction was one of supreme confidence that I was just fine.

THEN, I talked with an old family friend, just because I could.  He was quite generous with his time, and as one of the major experts in this field, quite concerned.  He INSISTED that I consult a surgeon (my oncologist dismissed the idea when I first met with her).  The surgeon, a high-end pioneer in this field, told me she's finding invasive cancer anywhere from 10 - 50% of the time she does an excisional biopsy in such cases.  

You MUST use specialists for your care.  Not just a breast cancer oncologist, but a breast cancer surgeon, and a breast cancer pathologist.  The battle against the MANY different forms of breast cancer is NOT well-established, unlike the treatment of some lung cancers, and other cancers.

Research is prolific----THANK YOU SUSAN G. KOMEN FOUNDATION (one of the rare non-profits that truly spends money as it promises to spend it---on research).  The state of the art in breast cancer treatment is changing every few months---no, really, it is.   After you've scanned the Internet for a few hundred hours, you will know more than your general practitioner.

When in doubt (and face it, when we jump into this breast cancer abyss, don't we all lay awake with doubts?) go get a consult with a specialist.

If you wonder whether you should be doing more, well, you should probably be doing more.    

To add one more note:
When I lived in NY, I went to one of the Most famous NYC, BC surgeons. He treats a lot of BC-Long island has , I believe , one of the highest rates in the country.

He told me years ago: Core biopsy is useful, but it only gets what the needle touches.
He always followed a " finding" with excision, for this very reason. And at the NCI center where I got my mastectomies...several women going for prophylactics recently were blindsided by invasive cancer findings. This simply points out that imaging is a useful, limited resource.

It's important to know this.

Moogie

Chocolat - You seem to have landed where I am planning to go. I was dx'd last week, see the oncologist next week, but feel strongly that a BPM is the route for me. What kind of reconstruction did your surgeon recommend? Did the procedure require an overnight in the hospital? How was the recovery? How long were you out of work? Did your oncologist or surgeon try to talk you out of it? I expect I will feel more settled after the decision is final. My surgeon did not even suggest the BPM route, he only told me about very close observation. But then, perhaps that might have been too much to take in all at once. So perhaps he leaves the BPM discussion up to the oncologist. Any help and advice is appreciated. - Jean

Hi,

I had a surgical excision with wire localization for LCIS and ADH in the left breast on 9/2 and no invasive carcinoma or DCIS identified. My BS told me yesterday to expect that the area where I have the stiches to get hardened in a week or two for about 3 months then they will go away so I won't be alarmed. Is this normal?? Did anyone experience such a thing? Thanks.

After I had my excision, the *area* became hardened (swollen) for several weeks.  It took months for the hardness to go away.  If I did it again, I'd probably massage it more, at least after the steri-strips came off.  Its very soft now.

Great news - you held the line!!! 

All meds and proceedures are risk vs benefit.  Only YOU can judge which side effects you want to risk.

Here's some info from the Mayo clinic. http://www.mayoclinic.com/health/breast-cancer/WO00092

Detailed info on Evista (raloxifene) http://www.fda.gov/cder/foi/nda/99/20815S3_Evista.htm

and for comparasion, here's a medication guide for tamoxifen. (I know you have decided not to take tamoxifen.) http://www.fda.gov/cder/Offices/ODS/MG/tamoxifenMG.pdf

And here's a discussion from the FDA about risks and benefits for tamoxifen and raloxifene and AIs.

http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Tamoxifen_and_Raloxifene

_Questions_and_Answers_5.asp?sitearea= 

You can also check out the Hormonal Therapy forum on this bc.org website.

But do remember that the people who post are much more likely to have a reason to do so: they are much more likely to have problems with the drug they are taking or have a complicated situation.  Not many people come here and post "I am doing just fine on <whatever I am taking>"

It is a personal choice.  No one has the authority to say what is best for YOU, because only you know your own heart and what each of these benefits or side effects mean for YOU.

If you're going through hell, keep going-Winston Churchill

Caz- Are you taking Tamoxifen so you don't have to have a constant follow-up?? I will evaluate my decision in six month. It's not a life-time decision.

Knowing what I know now, I would not do anything but an excisional bx after my dx of atypia via steriotactic bx.

Lay02,  My post was in response to leaf's original post of " to excise, or not to excise"  In my humble opinion, I would not want to stop at a CNB for fear of missing an invasive cancer.  I'm very glad I had an excisional biopsy an although it did not show invasive cancer, my lesion was upgraded to LCIS.  My steriotactic bx showed only FEA.

Hi everyone,

I have a question and did not know where to post it but I chose this section. I have the LCIS and ADH in my left breast and my right one is normal and cancer free as far as of August 08. But recently I kept getting like needle stickpin for a few seconds in my right breast. How do you interpret this? Is it cancer or something else?? Thanks,

I had a lot of needle stickpin/zingy sensations after my excision, and (not so severely) after my biopsies.  (I have LCIS and ALH.) They gradually decreased over time.  I remember clearly still having them after 6 months, but they were less frequent. 

I have heard it is probably due to having the nerves cut.  But you should check with your doc for any changes.I found tiny ice packs in my bra worked better for me than pain meds. Your mileage may vary.

Anne is completely right.  LCIS is usually multifocal (there are lots of spots of it) and often bilateral (it occurs in both breasts).  But this is of little significance because even if you have one spot of it in one breast (unlikely but possible), it puts BOTH breasts at risk. Its a weird condition.

They know about how many spots that LCIS women have because up until about the mid-1990s? the routine treatment for LCIS in the US was routine bilateral mastectomies.  (They looked at the mastectomy specimens.)

Most people do think now that most LCIS just does something to put your breasts at higher risk of breast cancer.  But in a **small** number of cases (and I have found no one who will commit to a number or range) most think that some LCIS can become a *nonobligate* precursor to cancer.

Nonobligate = 'not obligated'  (not destined) to become cancer = may or may not become cancer.

There's a lot we don't know...

 I just want to know why mastectomy are a choice when we really don't have cancer? 

The NCI agrees with you: on the website for LCIS:

Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach.  http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

I was not given the option of PBMs.  It is rather freaky though, to know that several women with LCIS and nothing worse who recently did have PBMs, did find they had worse (DCIS or invasive.) However, studies are more controlled than are anecdotes.

I am so glad I found bc.org, and they gave us our own forum.

I met with my surgeon yesterday about my recent LCIS dx. The radiologist, med onc, and now the surgeon all believe that the thing should be removed.  The cells were found in a thing that showed up on an MRI - the thing was there last year, but the biopsy I had then was clear. We don't know if last year's BX was a fluke and missed the LCIS, if it developed this year, or if there is something else along with it. 

My lifetime risk of invasive BC was already higher because of DCIS, and this is just one more risk on top of it....that said, I'm not ready for a prophy mastectomy.  If there is something worse found when they do the lumpectomy (as opposed to my DCIS, this time there is a non-palpable lump in there), I guess I'll consider my options then.

After this is done, I'll be heading back to the onc for a prescription for tamoxifen.  I keep telling the family that with increased screening comes increased odds of finding something. One day I'll get sick of all that and who knows what I'll want to do.

Lay--the studies show that the risk with LCIS remains elevated (for 15 to 20 years) rather than decreasing over time as with DCIS or invasive bc. Personally, I  have done very well these past 5 years since my diagnosis of LCIS. I have just under 2 weeks left to go to finish up my 5 years of tamoxifen. After a short break of about 2 months, I will be starting Evista for further prevention. A friend of mine was diagnosed initially with LCIS, was not even offered tamox, and was diagnosed with ILC and IDC within 4 years.  She said she was so glad that I was "doing something proactive" in trying to prevent an invasive bc in my future.

Anne