LCIS and DCIS diagnosis

daisy4ever

I was told today that I have both LCIS and DCIS.  I am wondering if anyone else has had both?  And what treatment options you were given and/or took. 

 Two docotrs said that because I have both kinds a mastectomy was the best choice.  Having a bilteral one may be an option.

I am still numb from being told.  My mother had atypical hyerplasia after menopause.  I am premenopause, and had really hoped this would just not happen.  But, yes, it did and here I am.

 I am new to this website and still trying to learn the vocabulary.

 One of the forms is a high grade and hormone receptive to estrogen and progesteron.  100% receptive.  The doctor said I would be placed on hormone-reducing therapy after surgery.  Any thoughts? 

I had hoped to go for a lumpectomy with radiation and maybe even hormone therapy.  But I don't want to lose my life over keeping a breast. 

If anyone else has been down this path with both LCIS and DCIS, please share your knowledge and experience. 

covertanjou

Hi Daisy,

I have LCIS/ADH/ALH but not DCIS.  I think DCIS trumps your LCIS.  I really think you should post in the DCIS thread.  There are many women who would be able to help you make sense of your diagnosis, and they could share with you their stories.  You will find this thread under "Connecting with Others Who Have the Same Diagnosis."

I am sorry I couldn't be of more help.

. 

TammyMarie

Hi Daisy,

Last month, I was diangnosed with LCIS in the right breast and DCIS and IDC in the left breast.  Because the cancer and pre-cancer (LCIS) was in different quadrants of the breast, the doctor recommended a bilateral mastectomy.  I did quite a bit reading on the subject and opted for a lumpectomy procedure instead.  I had my surgery last Tuesday.  I have two incisions on the right breast. At this time, my right breast does not look distorted, only bruised.  I have one very large incision on the left breast. They were not able to  guarantee clear margins by performing two separate lumpectomies on the left breast as the cancer was too close together (5cm).  I lost about 1/3 of the breast tissue.  It does  not look too bad. They also took several lymphnodes and there is an incision under my left arm.  I also had a drain for about six days on the left side.Waiting for the pathology report and additional treament.  When I am done with treatment, I will talk to the plastic surgeon about lipofilling to see if it will help restore the shape of the breast. Good Luck to you!

daisy4ever

Hi Tammy,

 Thank you for sharing.  I hope the pathology will show clear margins all around, on both sides.  Are you also going to receive radiation and/or take any medication?  I am also wondering how they were able to find/locate your LCIS.  Did you have a biopsy?  Or did it show up on a mamo?  What stage was it at?

I really appreciate this website and people like you opening up.  There is so much to try to understand.  I was told LCIS is hard to find with mamos, and this is why my doc said to have a mastectomy.  I would totally prefer a lumpectomy with radiation and taking a drug to reduce my hormones. Mine tested high for reacting to hormones.

 I hope you continue to heal.  Please let me know what the pathology report finds.  My LCIS and DCIS are also close together.  I was hoping they could take mine out with one lump.   I was also hoping that maybe they could go ahead and do a biopsy of some kind on the right side while I am under to check for any other probable areas. 

 Blessings to you.  Let me know how things go with your lipofilling.  I have not begun to reseach this area yet.

daisy4ever

Dear covertanjou,

 Thank you for letting me know about the other area of the website.  I will look into it and make a post there.  This website is really a jewel in an uncertain time of my life.  Being able to connect to other women, to others who are also going through this means a lot to me. 

dietcoke

I was diagnosed with both in January.  I had a needle biopsy in 2 spots on the right breast in December due to calcifications.  Based on that biopsy they diagnosed me with LCIS and recommended a surgical biopsy.  That was in January when DCIS was also found in 1 of the spots.  I had another lumpectomy to get clear margins.  Then had radiation in March.  I am now on tamoxifen.

Ann 

TammyMarie

Dear Daisy,

The LCIS showed up on the MRI, otherwise the would have never known about it.  The LCIS did not show up on any of the mammograms or ultrasounds.  And I had several of each. I also have a history of breast cysts.  I had two large cysts drained on the left side at the same time I had the second biopsy on the right side.  The doctor did not check the fluids from the cysts, which kind of surprised me. I wish you all the best!

penguin1

Hi Daisy4ever-

After an excisional biopsy for microcalcs, DCIS was discovered and a second excisional was done to remove it with clear margins.  LCIS was found after the second excisional, but the surgeon said that, as it is a marker to watch, that is what we will do plus Tamoxifin.  The two biopsies were done through the same incision several months ago and it is really healing well- not a scar I will be concerned with considering.  I was told radiation was an option but, because clear margins were obtained and due to my age and history, Tamoxifin alone was suggested and that's what I've been on for three months with absolutely no side effects.  It is a very individual decision, but that's my story!  If I can help in any way, please let me know... I struggled with the choices too and read a lot... this website is great and very helpful and comforting.

Take care!

Michele

nealeann

Hi, I was diagnosed with LCIS in March and after the MRI also with DCIS in my left breast and they had been watching something in my R breast for a long time.  After talking to Oncologist, surgeon, my husband and I decided to go with the double mastectomy in the beginning of June, followed with hormone blockers.  I have had the surgery and am almost done with the reconstruction but had so many side effects with the Tomaxifin that with the blessings of my oncologist have gone off it at least for now.  Good luck to you, it is a journey but you can make it through it.

Neale

Tinkerbell99

what is LCIS & DCIS

leaf

LCIS is lobular carcinoma in situ.  DCIS is ductal carcinoma in situ.

Lobules are where milk is made, and ducts carry the milk from the lobules to the nipple.  Many people speculate that most (not all) breast cancer originates around where the lobules and ducts meet. The ducts and lobules are lined with a  different type of cells which form the basement membrane.

In spite of the name 'carcinoma' in LCIS, most oncologists do NOT consider LCIS a carcinoma. (LCIS was given its name before they knew how it acted.  Many places claim it should be called lobular neoplasia.)  Many, many women with LCIS and nothing worse do not go on to get anything worse (including DCIS.) According to the protocols, LCIS (and nothing worse) patients have an option, if they choose, to only go for close monitoring.  (The minimum I've heard of is twice-a-year clinical exams and yearly mammograms.) I have only heard of 3 types of LCIS (and nothing worse): classic (which most LCIS patients have), pleomorphic (which is unusual), and something else called 'signet cell' LCIS or something like that.  I haven't seen anyone on these boards who has said she has had signet cell LCIS.  There may be other kinds of LCIS, I don't know.  Sometimes they come up with new diagnostic categories.Pleomorphic LCIS is thought to be more aggressive than classic LCIS and is treated more like DCIS, probably, though they have not come up with standard treatments for pleomorphic LCIS. Classic LCIS is thought to 'just' be a marker of higher risk for breast cancer.  There may be a small % (no one will define 'small') of classic LCIS patients whose LCIS MAY actually grow into ILC. Note the word 'MAY', as opposed to 'will become ILC.'

There is more controversy whether or not DCIS is considered a cancer. (I think some/many oncologists do consider DCIS a true cancer; certainly more oncologists consider DCIS a cancer than consider LCIS a cancer.  Both LCIS and DCIS are considered stage 0 cancer - there is no abnormal cells outside of the ducts or lobules.  In most invasive breast cancers, the cancer cells grow through the basement membrane into the surrounding tissue.  There is one type of invasive breast cancer, inflammatory breast cancer, which involves the lymph vessels in the breast.  It is rare but aggressive.) 

Unlike LCIS, DCIS definitely requires treatment.   DCIS is typically treated with excision (so there is no DCIS at the margins of the excision) plus radiation, or mastectomy.  There may be less aggressive or more aggressive  treatments for less aggressive or more aggressive DCIS types or sizes; I'm not an expert on DCIS. DCIS covers a wide variation in 'personality' of cells.  Some types of DCIS are much more aggressive than other types of DCIS.  

macksix6

Candi have you considered free flap surgery such as a diep flap (tummy) or a gap flap (tush) for your reconstruction. This type of surgery does not affect your muscle and the results are very good with natural looking breasts. You may have to do some research to find a Dr that is skilled in this type of surgery but it is well worth it.

CJFlorida

Dear Daisy- 

I hope all is going well with you.  I would love to hear what route you decided to take. I know there are so many decisions. This is my first time ever writing on here.  I wish I would have used this when I first started my journey... when you are looking for someone with exactly the same thing you have for help!!

I was diagnosed in May 2009 with LCIS in right breast, found by MRI guided biopsy. Decided to have a bilateral mastectomy (BM). Pathology report (PR) came back showing DCIS in the left breast (no mammo, MRI or any tests showed this). Glad I decided to have both off or would be back dealing with the other now.  PR also came back with cancer cells in sentinel lymph node of the right breast therefore radiation (RX) needed.  I opted for immediate reconstruction and tissue expanders (TE) put in following my BM.

 My Plastic Surgeon (PS) started filling my TE the 2nd week out of surgery.  I would go home after an expansion and get in the pool in the deep end and tread water using my arms only for 5-10 min.  By the next morning all my muscle soreness,etc. was gone. After I was over expanded (900 cc) then I started my 28 radiation treatments (RX). I had 10 treatments to the chest wall and 28 to lymph nodes. My Onco test came back at 4% so no chemo was necessary.  I am scheduled to start taking Tamoxifin this next week.

Because of swelling in the chest wall from the RX I have run into a few problems with the TE on the right.  It pushed the TE out the front of the skin. I am on my 5th week of being stitched up.  If it doesn't take this week will have TE taken out on right side only and Latissimus flap done to hold a silicone implant. Other than this little problem, all has gone extremely well.  I wish you well too!