So Confused! I need help, please!

BritValarie

I'll try to keep this as short as possible:

Big time history of family breast cancer.  My mother passed away at 38, her mother at 47, and her sister at 42.  I have had 8 biopsies and surgeries, 4 of these since december.  Diagnosis was LCIS, ADH and ALH.

After discussing with my surgeon, we decided Tamoxifen was not a good option for me.  She said that by the way the cells are changing and calcifications increasing, it will probably mean multiple biopsies in my future.  So, she recommended a PBM.  She sent me for an MRI before we do anything to see if she should do an SNB. (biopsy lymph nodes?)

Well, I just went to pick up my MRI report (haven't spoken to my surgeon as she is not available until Friday).  This is what the report states... I'm so confused!!  Of course, there is more on the report for the left breast stating a cavity from my recent lobectomy?  And something about a lymph node favoring postoperative etiology?

Right Breast: Birads 2 Benign Finding

Left Breast: Birads 6 - Known Malignancy.  Surgical and Oncological consultations are necessary. (does the MRI radiologist know that LCIS is not Malignant?)

Any feedback would be greatly appreciated!

Thanks,

Valarie

beacon800

Don't count on the radiologist knowing that LCIS is not techically considered a "cancer".  Mine hardly knew what it was at all and called the pathologist to see if it was a typo for DCIS.  (pretty funny, huh!)

Anyhow, birad 6 means biopsy proven cancer and since your bx did not really show cancer I think the BIRAD is a technical error, not indicative of a new cancer.

BTW I did bmx mostly due to poor family hx and I am very happy that I did.  All is well.  Did you do BRCA tests?  I did and they were negative.

BritValarie

Hi beacon800,

I am so happy to hear that you are glad you did a PBM.... I guess it's what I needed to hear

I have not done any brca testing, basically due to cost.  My Breast Surgeon said it would be good to know, but her recommendation would not change.

Yes, I figured it was a typo or something.  I just find it incredible that a radiologist does not know that LCIS is not cancer. And seriously, does not give me much confidence in the report at all!

Take care,

Valarie

beacon800

Hi again - wanted to mention the SNB.  I like what your surgeon is doing for you, trying to avoid that procedure via extensive preop testing.

I had the same treatment, meaning so many tests, MRI and biopsies before BMX and ultimately we decided that I was so well screened we could skip the SNB and I am really grateful for this as my final path showed no cancer and thus our bet paid off.  Long run side effects like lymphedema are much less likely with this approach.

The pain part is that with so many tests and MRI they will keep finding things!!  I felt like we could hardly move fast enuf to get them off before we found yet another thing to biopsy!  

BritValarie

Thanks again beacon800!

All this is great information and makes me feel better about things.  I am so nervous about the PBM, but the thought of lots of biopsies in the future is even scarier.

My next appt. is October 11th with a great plastic surgeon (Or, I am told he's great)  I wonder if my Breast Surgeon will call with results from the MRI   That should be interesting!

Valarie

KellyMaryland

same as beacon, no snb

carol57

Hi Valarie,

One thought on BRCA testing is that even though it would not change the surgeon's recommendation, if you are BRCA positive, it also puts you at some serious risk for ovarian cancer. If you knew you were BRCA positive, you might also consider having ovaries and tubes removed, depending on lots of life priorities, to lower that particular risk.  I have a similarly sensational family BC history, all premenopausal like the women in your family, so I was tested after my LCIS diagnosis, just to see if I should do the ovary/tube surgery while under for bmx and recon. I was surpised to learn I'm negative, but the information was indeed priceless. My family history meant the test was covered by insurance, fortunately taking cost out of my decision.

Best wishes in all your decision-making,

Carol

Letlet

I would call the radiology place so that they can correct that. It's a medical document that states you have ca when you do not. They should correct that asap.

leaf

Ah, yes, the controversy of whether LCIS is cancer or not.  At my last D+C, they wrote that I had a history of breast cancer and was on tamoxifen.  I let it slide because I suspect my gyn said that so that insurance would be more likely to cover my D+C.

I have been pretty capricious as far as answering whether or not I have a history of cancer.  Sometimes I circle both Yes and No for the answer.   I had to spend about 20 minutes on one consult for an unrelated condition arguing with the neurologist that LCIS was usually not considered a cancer.  (His reply, "But it has carcinoma in the name!")  I don't want to waste time for other specialists.

Yes, I would inquire if your insurance would cover BRCA / other genetic mutation screening.   As you have seen, there are some families that have a horrible incidence of breast cancer, yet do not have a known deleterious BRCA mutation.  I completely agree with Carol that should you turn out to be BRCA positive, you may want to take other prophylactic measures.

Best wishes.

BritValarie

Hi Leaf,

I know what you mean.  I went to see my GYN and when he saw my report, he said I'm so sorry to hear you have breast cancer.  When I told him it was not considered a cancer, he said if his wife came home and said she had LCIS, he would say, honey, you have breast cancer!    He said he didn't care that they didn't call it cancer, that in his opinion, the cells have changed enough to call it a carcinoma and appropriate steps should be taken to make sure it does not become invasive. 

It amazes me how many different opinionsyou hear about LCIS.

Anyway, I am going to speak with a plastic surgeon on Tuesday... as of right now, I believe I'm going to go for a PBM.

I called insurance, and they would cover the BRCA test, but my cost would be $600...so, I haven't decided whether or not to do it.

Thanks again, Leaf!  I consider you an angel on these boards.  Guiding and helping everyone!

Take care,

Valarie

VictoriaB

My second opinion surgeon mentioned that LCIS in one breast puts you at increased risk for bc later in the other breast. I am now considering BMX just for that reason.

leaf

Yes, subsequent breast cancers after an LCIS only diagnosis are roughly equally distributed between the two breasts.  So if treatment is chosen, they normally treat both breasts.  In the earlier years, some women had single mastectomies.  This was done because  at that time they thought LCIS was like DCIS except in the lobules. 

LCIS patients who go on to get breast cancer get much more ILC than the normal population.  ILC is more frequently bilateral.  They also found (looking at mastectomy specimens) that even if they find LCIS in one spot in one breast, there are usually multiple spots of it in that breast, and the LCIS spots are usually bilateral.  Subsequent breast cancers, if they occur, are often at a place that showed no abnormal imaging.  

LCIS is weird, and there's a lot they don't understand about it.

JanetM

Thanks leaf......all of this makes LCIS so nerve racking.

ArleneMarie

Hi valerie,

I haven't been on here for awhile and I just noticed that you will be seeing your PS today.  Here are some questions that you may want to ask of him:

1) Based on my body type can you show me some before and after pictures of what I should look like?  This helped me get a better feeling for his abilities.  he showed me before and after pictures and I have to say, it was dead on after he did my BPMX.  In fact, I look more like an augmented surgrey as compared to a mastectomy; especially since I was lucky enough to have been able to have a nipple- sparing mastectomy.

2) Your PS is the Dr. whom you will spend the most time during the upcoming months should you choose that path.  Ask yourself, do you feel comfortable in asking questions of him/her?  Does he explain things clearly to you?  How supportive is his/her staff?  Does he/she use a specific breast sugeon in conjunction with the surgery?  I saw my breast surgon only one time after the mastectomy and that was by chance in the waiting room while I was waiting to have my exchange surgery from TEs to implants.  She was so excited to see me and my progress that she asked if she could enter the operating room during the surgery.  Other than that, it was only my PS and his support staff.  They were amazing!

I hope this helps.  I am so happy I went ahead with my nipple sparing bilateral preventative mastectomy.  I look great and I avoided the possibility of having to deal with this later in life...with the added possibility of having to endure chemo. 

BritValarie

Hi Arlene Marie,

I read your post the night before my appointment.... thank you!  It was very helpful!

Actually, I didn't even have to ask him about the photos.  He showed me pictures of women with my body type and the same procedure as me.  But, I would never have thought to ask him... so thank you!

The appt. was 2 1/2 hours long.  He really took the time to explain everything to me and answer all my questions.  He then told me that they had a team for the Susan G. Komen event this coming Saturday and asked me to join.  His staff was great!  I already feel like part of their team.

So, I should get a date soon... he said probably 6 weeks.  Of course, I'm anxious, but looking forward to having it over and done with.

I agree with you about avoiding something a lot worse in the future.  I remember as an 11 year old little girl.... watching my mother go through radiation and chemo.  Of course, it was the 70's ... and in Britain.  Things have improved a lot since then.  But, I remember my mother showing me her mastectomy and saying she didn't want to upset me, but she made me promise her that I would do everything to avoid going through what she went through.  She was 34 years old when she foind a lump and she was sent away saying she was too young for it to be anything serious.

Thanks again... I really appreciate your post.  It helped a great deal!

Take Care,

Valarie

ArleneMarie

I am so glad