We are 144,826 members in 73 forums discussing 114,666 topics.

Help with Abbreviations

All TopicsForum: High Risk for Breast Cancer → Topic: DCIS,LCIS, ADH,ALH

Topic: DCIS,LCIS, ADH,ALH

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Apr 13, 2010 01:58PM

amybarts wrote:

I am struggling with making a decision.  I had DCIS  in right breast 12 years ago and everything was removed. In January this year I had wide excisional biopsy and they found DCIS and LCIS in the other breast. Had  an MRI and they found another suspicious area , did another surgical biopsy and found more LCIS, ADH and ALH. Have seen the oncologist and they basically gave me 3 options to chose from. I can monitor every 6 months alternating between MRI and Mammo, I can monitor every 6 months and take tamoxifen, or I can have double mastectomies. I am really struggling with what to do. I am 44 so fairly young to have this keep happening. I have two young children and not sure I want to take the chance of developing an invasive breast cancer. The thought of having biopsy after biopsy to me is awful but then I don't know if I want to lose my breasts.  Has anyone else had these types of issues and what did they do? I am also concerned whether insurance would cover mastectomies or not because I can't afford to pay for everything out of my own pocket

Log in to post a reply

Posts 1 - 10 (10 total)

Log in to post a reply

Apr 13, 2010 02:11PM lvtwoqlt wrote:

Amybarts, I was 44 when I had my first biopsy for ADH on the left breast, I was monitored every 6 months with mammo and cbe from my surgeon. 18 months later, close to my 46th birthday, I had my 2nd abnormal mammo requiring a biopsy on the right, it was ADH again. My doctor put me on tamox and suggested I consider pbm because of the contralater ADH as well as family history of breast/ovarian cancers. I started my decision making by writing down a list of pro and con reasons to keep my breasts vs bilat mast. For me to see it in writing helped me to think clearly. At the age of 46 and 1/2 I had my third abnormal mammo in 24 months, right side again in the same area as previous ADH. Using my pro/con list I opted for bilat mast. It wasn't an easy decision to make but only one that you can make for yourself. You will see all kinds of reasons to keep or to remove both breasts on this site but it is a personal decision.

About the insurance, because I had problems previously in both breasts they did cover all surgeries.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
Log in to post a reply

Apr 13, 2010 02:19PM amybarts wrote:

Thanks Sheila that is actually a great idea to write it down on paper. As far as insurance I had DCIS in both breasts so I would think insurance would cover it, my breast surgeon is out of network and I really do not want to switch DR's. I have had so many abnormals Mammo's ,sterotactic biopsy and wire guided biopsies just don't really want to have to do that anymore feel like a pin cushion two biopsies within 6 weeks. How long was the recovery for the PBM?

Log in to post a reply

Apr 13, 2010 03:49PM awb wrote:

Amy--- I was diagnosed with LCIS over 6.5 years ago and my risk is further elevated due to family history of bc (mom had ILC); I do high risk surveillance of alternating mammos with MRIs every 6 months, took tamoxifen for 5 years and now have been on evista for over a year for further preventative measures. This route works for me, BUT I've never had to go for any more biopsies over the years--if I did, I might very well chose PBMs. It's a very personal decision--only you can decide when "enough is enough". Since you have DCIS as well, it trumps all the other things as it is the most serious, and your treatment will be directed at the DCIS primarily. (although having the LCIS  puts both the breasts at equal risk of invasive bc). Are they also recommending radiation? Good luck with your decisions--whatever you decide will be the right choice for you.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
Log in to post a reply

Apr 13, 2010 03:59PM lvtwoqlt wrote:

Amy, I had expanders for my recon placed at the pbm surgery. My doctors originally wanted me out of work 6-8 weeks. I work at an office and at 5 weeks was able to come back part time for a week then back to full time. The first week or two, I spent more time sleeping on the couch when trying to watch movies but the sleep helped me in the healing. I was able to go out with my dog to put her on the cable run several times a day and sit on a chair in the shade with her. The hardest part for me was not being able to drive for several weeks and depending on others to take me places. My hubby is a long haul truck driver and I was by myself all week long. My mom and sister did come by daily to help around the house and bring in groceries.

sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
Log in to post a reply

May 5, 2010 09:57AM vmudrow wrote:

I was diagnoised in January with ALH.  With family history and numerous biopsies already I am ready for masectomies.  My surgeon is supportive and I didn't want to take tamoxifen and have MRIs every year etc.  I don't want to sit and wait until I get cancer.  My insurance has approved everything.  Good luck with your decision - MY SURGERY IS TOMORROW!!  Nervous but glad to get it behind me.

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer

Surgery 02/01/1992 Lumpectomy (Left)Surgery 03/01/1996 Lumpectomy (Left)Surgery 05/06/2000 Lumpectomy (Right)Surgery 01/23/2010 Lumpectomy (Right)Surgery 05/06/2010 Prophylactic Mastectomy (Both)
Log in to post a reply

May 5, 2010 01:06PM, edited May 5, 2010 01:08PM by HelloFromCT

I had PBM with immediate DIEP recon in February.  I had ADH and family history and risk was high so weighing all the options I chose peace of mind.  I am so happy that I had the surgery.  It was the right decision for me and I would do it again tomorrow.  It was not a hard decision because I knew what the alternative was and I knew that I would never be able to be happy as a high risk surveillance patient.  Some people can do it, but I am too much a worrier and I would have been in a constant state of anxiety.  It just depends on each individual and what works for them.

vmudrow good luck with your surgery tomorrow!

Log in to post a reply

May 5, 2010 07:01PM Shrek4 wrote:

I was initially diagnosed with DCIS in my right breast, multifocal and widespread. Mammogram hadnt shown anything before. MRI after stereotactic biopsy also showed areas of concern in the right breast. I didn't think more than a second before telling my BS "they both come out". God thinking, as the pathology after surgery showed, the left braest was full of ATH, on it's joyous way to become DCIS too.

By my knowledge, federal laws make mandatory for all health insurance carriers to cover not only mastectomies,but also breast reconstruction.

You might want to take a look at this:

 www.thebreastcaresite.com/tbcs...

Log in to post a reply

May 5, 2010 10:47PM leaf wrote:

That site says insurance companies must cover mastectomies 'for breast cancer'.  If you 'only' have ALH or ADH, the insurance company may not consider that 'breast cancer'.  Most oncologists do not consider LCIS as 'cancer'.  Some people don't consider DCIS as 'breast cancer'.   Cancer is not a line in the sand.

I am sure some insurance companies will avoid covering as long as they can.  While I hear on the FORCE website that most insurance companies end up covering PBMs for BRCA patients, in general they have a higher risk for bc than most of the figures I've seen for ALH, ADH or LCIS.

I just don't want people to have unexpected medical bills.

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

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
Log in to post a reply

May 19, 2010 10:53AM amybarts wrote:

I have decided on having the BMX and I am having the tram flap reconstruction. How was the reconstruction for the tram flap and do you have any tightness in your back and under your arms?

Log in to post a reply

May 23, 2010 01:42PM sherry7 wrote:

Amy you are 48, contact the susan komen foundation and you may find that they will help you get everything paid for.  I was 49 when I contacted them, so glad I did. Cut off is 50.  So, I suggest you contact them, they may even pick up bills from the things you have had done since approached with bc suspicion.  Good luck sweetie, Sherry

I had a single mast almost five years ago for dcis.  Hugs and prayers.

let the miracles happen...

Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+