Considering PBM

"Silly"??? NO WAY!

This is serious stuff. And as I said to Carrie once, I am glad that she caught a break in that she found hers while it was still small enough to get RID OF completely!

If we all could only have been given that gift.

My first cancer was dx'd in 2001. It was ductal and it started out as DCIS then broke out of the duct and became invasive. So chemo and rads for me.

My second cancer is Lobular. That is a sneaky cancer because it is SO HARD to find. And usually when you do find it the tumor is very large.

So if you have the chance to stop it in its tracks you should do everything you can.

GOOD LUCK to everyone here!!!

Love you Carrie!

g 

Hi Anne, I have a similar dx to yours and my bs has also said to me that she feels my best option is a proph. bilat mast.  I have met w/ Dr. Robert Allen in NY and am waiting for a surgical date to do I-Gap.  They're telling me they might get me in for the 2nd week of Jan.  Dr. Allen has offices in NY, New Orl., and S. Carolina.  He pioneered the DIEP procedure and than the Gap procedures. There are only a few others that will do a simultaneous I-Gap.  Dr. Delacroce and Dr. Sullivan at the Breast center in New Orls. and Dr. Craigie and Dr. Kline in S. Carolina.  These 2 are affliated w/ Dr. Allen.  There is alot of info on these procedures on Dr. Allen's website diepflap.com. I live in Mass so NY is not too far for me to travel but I was prepared to travel to S. Carolina if I had to.  Most women who have done these procedures have had to travel.   

There is a lady that I've spoken to on the breast reconstruction section. She had the procedure done w/ Dr. Allen and she's very happy with her results. Her name is Felicia,she's a sweatheart, I'm sure if you post there she'll respond. 

Hope this helps.    Take care...

Hi awb,

My dx in 05 was ADH borderline DCIS, 2 biopsies to get that dx. In 2007 dx  two more biopsies and dx w/ LCIS and ALH.  I have very dense breasts which make it difficult to rely on mamo.  I've  had 2 ultrasounds because of density issues, mamo's every 6 months, (even though they are virtually useless for me), and I've been on tamoxifin for 2 years.  Drs not really sure if it's helping.  My options are PBM or watchful waiting w/ MRI's.   I'm going w/ my gut that eventually if I choose to do the waiting game I'll be dx w/ something invasive.  I asked my bs, who I respect and trust, if she was faced w/ my dx would she be considering PBM and her response is most definetly.  I believe this is my best option. God willing, I'd rather try to prevent it now than treat it later and hope that it was caught early enough. I have met w/ other bs  for 2nd opinion and was given the same advise. My Onc. feels that either  option is reasonable the decision is up to me.

Hi: I had a spot that felt funny on my left breast that we were watching especially because i was high risk (at the time just family history).  Kept a close eye and nothing showed on the mamo or numerous ultra sounds.  Then I found out I was brca2 and had pbm in July 07. The biopsy showed lcis in the spot i could feel that didn't show up on tests.  It bothers me to have "something" (precancer, precurser, or whatever!) growing that can't be seen on our testing proceedures.  The pbm was very easy compared to my sister's experience (stage II found at her YEARLY exam). I have no regrets and feel my choice was right for me. good luck.

Hi: My surgeries (double masectomy and reconstruction) ran about $150,000.  It was in-network so the out-of-pocket was $1,750.00.  good luck.

Peaches, I have an HMO and I only have an office co-pay $20 per office visit. No co-pay for hospital/surgery. I had to battle with them a bit because they don't like to go out of plan but because there is no doctor qualified to do simultaneous I-Gap in my area, they allowed me to go out of plan with the same coverage as in plan. I don't know what the expenses are because the surgeon is contracting directly with Ins. carrier.  I'm sure I'll find out eventually.  You may want to speak w/ Dr's office  again and ask what  their fees are. Also If they understand that you'll be paying out of pocket maybe they can suggest payment arrangements. I found Dr. Allen's S. Carolina staff to be more helpful than New York.  I don't know where you are from but is New Orleans or S. Carolina also out of plan for you?

Don't give in until you've made some more phone calls maybe there's a way.   Good Luck!!!!   

Welcome to the forum, Nancy.



I know what you mean about having the support you need. My gyn is very supportive, but she wouldn't be the one doing the surgery. My breast surgeon is 'not interested in doing any more surgery on me.'



When I told my GP I was suspicious of my radiologists, he replied, 'Its really hard at diagnosing bc.' Well, yes, I know that. But if your experience with breast radiologists was:





a) Having a wire insertion with a pain score of at least 8, and they told you not to move a muscle, and if you told them you were in pain you would cry, and if you cried you would move, and this went on for at least 1 hour. He never asked if I was in pain. At the next biopsy, I pulled out of the mammo because I had been so traumatized.



b) After 3 consecutive ultrasounds, and 2 mammos, I was told they may have 'mislabeled' the ultrasound as scar tissue. I also had 2 visits to the breast surgeon who did the breast excision in question. So I could have had totally obvious ILC seen under ultrasound for 9 months. The biopsy was read as benign, but NO ONE ever said 'I'm sorry.' or even 'I'm sorry you are in this situation', which is NOT admitting guilt. I NEVER want to go through that kind of scare again.



c) On my last mammo (Sept 2007), the radiologist says "to put you back on track I recommend next mammos next Sept (2008.)" Well that would be 18 months for my R breast.



When I was first diagnosed, a person handed me a flyer for a support group for DCIS. Well, I don't have DCIS, and I know there are too few women out there with LCIS for there to be an in-person support group in my area. I am SO glad we have our own forum.



I know there was one woman with stage IIIb bc,with small children, who said of PBM, that "If she knew then what she knows now, she would have them off in a heartbeat." Best of luck to all of us!

leaf

Hi there!

I had a mastectomy for Invasive Lobular Breast Cancer in March. Two small tumours and lots of LCIS. No lymph node spread so no chemo or rads. Am on Tamoxifen and Zoladex inj.

My remaining breast is full of LCIS and although a recent mammogram showed that it had not worsened since original diagnosis in Feb, still at high risk of another tumour.

I have opted for a prophylactic mastectomy on my right breast. I'm finding it hard to deal with some people thinking I'm mad to go through major surgery again if there's 'no need'! But I want to give myself the best chance I can and not wait until I'm much old and less healthy before I need to have a mastectomy -- if at all.

Plus I feel all lop-sided now and hate wearing my prosthesis and don't want recon.

Although my decision is perhaps easier than those of you who haven't been diagnosed with bc and HAVE to have an op, I say do what makes YOU feel most comfortable. Your breasts, your life!!!!

Thinking of you --

Jacki xx

Hi Lolita, I'm scheduled for PBM on Jan. 14. I was so certain that I was making the right decision a few months back.  But now I find that I am second guessing myself.  I think it's the fear getting to me. I've had 4 biopsies in 2 years several ultrasounds and MRI. DX with ADH borderline DCIS, LCIS, ALH, and extremely dense breasts. My surgeon has suggested the PBM. Onc. says she'll support either surgery or watchful waiting. I'am 43 and my mom was diagnosed at 69.  I hope by having this surgery I'll be able to avoid an invasive cancer which I fear would not be found early enough for treatments to help. It is just so hard to make this decision when your not being told you have to do it because of a dx.  I'm glad to hear others have done it and don't have regrets.  I'll be glad to have it behind me.
Best of luck with your genetic testing. 

Take care.